compromise or accomodate

"Please get your shirt on H I need your help please!". "Honey find his socks help him please we are late again." It's another Sunday and another Sunday we are late for Church. We already missed the sunrise service but I didn't hold high hopes for even making that one. I race from one side of the house to the other. "Ella find a shirt, brush your teeth, feed your animals; HURRY we are running late." She looks at me as if I am crazy. I am I am running around on Easter Sunday morning barking orders instead of just letting everyone relax with their goodies and have fun. "Nevermind Ella I will do your hair just please baby hurry!!"
After a small sprint before the marathon I call Church. We load up in the car, holy cow its 10:10 we NEVER leave the house that early. Wait hold on I tell myself we aren't late thank God! We can get a good seat I can have time to settle H and maybe I can listen to the sermon today. Maybe. In the back I can hear H saying he doesn't want to go and that he just wants to go home. This could seriously go either way at this point. Who knew the one Sunday we are actually early the church is already full with close to 100 people.
I let out a heavy sigh. We are greeted by our friends Scott and Stephanie and told we could sit in front of them. A sweet older man sat at the end and said he would move if we needed his seat. I told him it wasn't necessary as H generally sat on my lap or the floor. Or in this case today he opted for the nursery. "Loud mommy, it's loud!" "Mommy I need to leave mommy its loud and lots of people," I looked at the gentleman apologized and excused myself and H. The church is never this full, however it's Easter and we had a guest speaker. I felt obligated to go since we had missed last week and I missed ladies group Wednesday due to illness.
"Lets go in mommy, I want to play with cars." We walk in I settle in to the rocking chair. The room is empty. Service hasn't started yet so I stand up and go to the door just to watch everyone else. Talking and mingling. We know two families maybe three at this church, well I do Chris knows everyone. I am trying to fit in and mingle but with H it's almost impossible. I must have lost track of what I was doing because when I looked back up the service had started. H was laying on his belly rolling his cars back and forth. His new obsession from his Easter basket. He is content and seemingly relaxed. I retreat back to the rocking chair. I ask a few times if we can go sit with daddy. 10th try is the charm. We quietly, well as quietly as we can for us walk back into the church. We lasted 2 minutes the music played and he was done. We make our escape again to the nursery.
Just once, just once I want to hear what is being said. The nursery has speakers but to me its not the same as actually sitting amongst the congregation sharing this time with the other families  It's not the church's fault its a small congregation and the pastors wife works with special education. She gets it just as much as I do.  I hear the pastor ask for the children to come up to front. This is a crap shoot for H normally. "H sissy is up front do you want to sit with her?" "Momma I go see Ella and sit mommy." Round 2. This time he makes his announcement as he walks in as he looks for Ella rather loudly. "It's a good thing he" is cute I mutter as I stand at the back doors of the church. He sat with Ella. I was so relieved. When it was said and done he wanted to retreat back to the nursery. Of course he did.
We had the room to ourselves and then slowly others came in. It was a longer service. Two parents with infants came in they fed their child and then walked around. Four children around his age walked in. One begins to take his toys, pester him and causes him to become upset. I ask the child to stop no luck. Go figure. "Now what?" I say to myself. Back with congregation we go. The guest speaker is still talking and H is laying on the floor. I heard part of it but I was so focused on H I missed most of it. I am growing resentful and irritated. Why do I even bother showing up each week? I have yet to sit through a sermon.
We get up for our final time. I let H just play in the entryway. This time I hear almost nothing of what is going on and just watch. It's not the church's fault. They aren't supposed to cater to our needs. I like this church. Do bigger church's have better accommodations? They are huge there and I hate getting lost in a crowd and just being a person. Do I sacrifice the possible ability of accommodations for the convenience? Do I put off church so that I take the stress of of us?
I am at a crossroads. I want us to be involved in a church and support my husband who is suddenly able to feel comfortable and socialize amongst others. I just hate putting H through this and myself. Ella and Chris seem unaffected which is good. I want this for them. I realize that not everywhere we go will have accommodations and be able to meet our needs. I don't feel like we are entitled to or deserve some sort of special treatment. I try to seek out places though that I know are a good match for us. I know that H has to start getting used to more of the real world. Kindergarten will be one of his biggest exposures and real world submersions. I know soon he will realize he is different and I don't want it to be a huge issue for him. I want him to know that there is a place for him in this world and that it's not always going to be easy and it's not always going to be able to cater to his needs.
I've analyzed this whole situation today and I know that while it would be easier to find a bigger congregation that probably has a way to meet our needs, it won't meet all of ours. I am ok with his needs not fully being met for once. I know that maybe one day he could get comfortable with this and until then we will just chill out in the nursery.

No holding back

It's been a while, longer than I like going, but I am back. Our lives had many great and wonderful changes so far in 2015. We moved and now have a much bigger home with more space for all the children and a wonderful space for H to do his therapy and work. It's been amazing. The family seems much happier and relaxed it is exactly what we needed. I started a new job. I left my job teaching preschool and decided I needed something different, something that would make me feel that I was making an impact. I decided to take a leap and be a special education aide for high school students. Its been eye opening. I am no longer living under my sheltered special needs rock, I am fully exposed to the real life, real world things that are going on once children leave the comfy confines of the pre k/ elementary setting. It has changed my thinking and outlook on things.
In January I had the privilege of attending the Parent Organization Academy and since then I find myself really going back to that information  to help me. I never thought about the older kids with special needs as I was going to these things, I wanted to focus on the here and now not what would lay ahead for us. I regret that I wish I had. Not just for my own knowledge for my child but because I need to be a better resource to others around me. Thankfully I kept those resources and did listen to some great things so I am calling it to memory now.
Last year when I went to a conference I again didn't get too involved with the discussion about state supported living facilities, nursing homes and things of that nature. I always have had my thoughts and opinions on them and never really wanted to have to utilize them for myself or husband if we ever came to needing help. I never took into consideration that families utilize these facilities for their children. I know everyone has their reason but I do recall in that meeting last year hearing how they wanted to have families be better equipped and trained to care for their children and young adults in their home, if not help find affordable ways to make it happen.
Spending the last four weeks with my new job I have learned to really appreciate and not take for granted what I have. Most of the children in our special education program do not live it home or have a shared custody with the state school, or supported living facilities. Its tragic. Its so upsetting knowing these families felt so hopeless and overwhelmed that they couldn't care for or meet the needs of their child. To know our community missed the opportunity to help these families seize what they would need to help keep them with their parents hurts but not as much as hearing that some parents just didn't want the help and didn't think they were capable and they turn them over to the state.
Each of these children who have the capabilities over the past month have shared their goals, their hopes and dreams with me. I have a child forever wheelchair bound, no chance to do anything on his own, want to be a greeter at walmart. Another wants to work at Sonic. One hopes to be a singer or artist. There is one who has such big dreams in making it big in music. The point, they are all children and just like any other child they want to be something, someone when they are done with high school. They have dreams and ambitions just like we do, except while parents and family were encouraging ours, their parents, caretakers whomever it might be squelch theirs and deviate them to something else. They are held back even more now. Its bad enough they spend their time away from school feeling out of place now here they are being told even when want to be an adult no one will support you and most will discourage you and make you feel that you aren't capable of having a future. It has to stop.
None of my children will be held back. They want it, its theirs. You want to fight for it, then go for it. While I might know deep down some of their dreams and goals might not happen I want them to still learn these things on their own. It might be a learning experience for me in the end when I see them make that impossible goal that I think is out of their reach. I will sit more intently and listen to what is said. Their words are important and should be valued. They may have a disability but they still have many abilities and that should only make them and their dreams different not less than anyone elses.

A Whole New World

Yesterday H had his ABA assessment with Taylor. I have, we have been waiting for this day for two years. Not all therapies are covered by insurance unfortunately, especially some of the more successful ones ironically. Our hold up was the lack of money to cover this therapy as it can run at least 100.00 an hour. However now that they have what is called a Tech it costs us about half that so we just have to get through the initial consult and then we are golden when it comes to the his weekly sessions. Yesterday was a 2 hour meeting where they tested him in various areas to see strength and weakness. We got a lot of input in that short time and after hearing what she had to say I started to feel this weight slowly move off my shoulders and chest. The fog was starting to lift and things I didn't I would be able to see were starting to appear.

When Taylor was telling me about social aspects and escape tactic I was relieved to hear she had a plan for that. Between home and school H has found many ways to avoid tasks that he does not prefer. Some have gotten to the point where it becomes a huge knock down meltdowns. He struggles of course with social situations where its not what he wants, when he wants and how he wants it. Yes this could also be typical 4 yr old behavior but also at this age they start to learn and make progress we seem to either stay at a standstill and or regress in these places.

When we got in the car I really started thinking about how things are about to change, how they are going to impact not only H but our entire family.  He is about to learn so much more now. We are going to learn so much more.

Its crazy to think this has been almost 2.5 years in the making. Its pretty overwhelming and emotional actually. You think about all your child's struggles and deficits, and how it can hold them back, you want to help them but these things are just beyond your power and control. You, as a parent feel inferior. However you meet these amazing therapists and they take on a missing role in your family. They help bridge this gap to make you even stronger and cohesive. They are your missing link.

Fast forward to today January 3 and we had our two hour home visit:
It was productive and rewarding. Taylor came to the house and saw our family in action. She spent a small amount of time playing with H to see how his play skills were. They are good minus the social interaction and having his toys messed with. She also saw how his interactions with his siblings are also. That was very hit and miss. He has some demanding and needy behaviors. Some are pure behavioral while others are sensory seeking and just where he lacks.

The highlight was when she had the kids come to the table and ask them what they see. Perfect! They will be getting sibling training. The kids are excited to know this is their time to shine and be apart of helping their brother learn and grow.  Once a month there will be a home visit, so in preparation for it the children will document what they have seen improve and what they see still needs help and new things that need to be addressed. This way we can see overall where he is progressing.

Each week he will go three times for an hour and a half. Some will be at the rehab facility some will be in the home. All of this over time will help him at home, in school and other social situations. The other bonus is Taylor will be apart of our ARD meetings now. I think we have a pretty stellar team. A team, that is what it takes. Some say it takes a village to raise a child. It takes a village, a team to help raise the special needs children. Our team is about to go and take on on the world!

Making my fears his.

Saturday my husband sort of slipped into our conversation that he would be going to church on Sunday. He would be speaking about his Wounded Warrior retreat he went on the weekend before and he also wanted to check out the church. He also asked if I would join. I sort of haphazardly replied with a sure and carried on with our conversation. 

Church a word that hadn't been a huge part of my vocabulary since graduating from a Catholic High School in '98. It popped up a few times after my first two children were born but nothing ever came to fruition on it and I sort of let it just go. In '14 I moved to what is affectionately known as the Bible Belt or West Texas. About 90% of my friends attend church but after the birth of H I really stopped even trying to think that Sunday service was going to happen. I also start to feel conflicted on what I wanted to do I just let the whole topic drop completely. 

When we go out Autism and Sensory diagnosis two years ago I decided to try and keep it simple. My friends around me all offered to open their church homes to my family but honestly the thought of schlepping my special needs child to a church service was about as much fun as walking across hot coals barefoot. I already had it set in my mind this would end poorly. He would freak out in the nursery so they would kick him out, I would try to keep us with him during the service and if he became disruptive I would deal with the angry eyes of all those in the congregation. None of these outcomes sounded remotely appealing to me so I politely declined offers and said that church would just be something we might not do for a long while. 

Sunday morning comes and honestly I am trying to talk myself out of this. H has never been to Church and I don't know any of these people and while yes it’s the house of God and they shouldn't judge I sort of felt that the judging would come harsher because this is a place of worship and my child could wreck this for them. I literally tuned the morning out because I was trying to mentally prepare myself for this new endeavor. Normally I would prep H for a new situation. I selfishly prepped myself instead and forgot about the important factor in all of this. To this point I don't even think I had made mention of what we would be doing. Maybe looking back I didn't prep him because I had no idea what the Church setting would be like. 

We pulled up and I sort of stalled. I wasn't ready myself to walk through this unfamiliar territory. I suddenly became hyper focused on H. I did what I could to slow down time. I walk in the door clutching H close. I am trying to protect him. From what I have no idea its Church seriously who is going to hurt him?  Chris walks in and takes a seat. I am far from ready to take that step myself so I opt to wait out in the hall. H is growing anxious or maybe it’s me. I see a nursery, however the lights are off and I don't want to barge in. I draw in a deep breath and walk through the doors. The setup is ideal. There are no typical pews, they are folding chairs. Chris introduces me to a friend of his who set him up to go on the retreat. His wife had worked at the hospital that we have taken H to and she has actually encountered him before. We took our seats and gave H his trucks and some sensory items. He lay down on the floor and started to scoot back under the seats. This is what he does in new situations. At this point as long as he wasn't distracting anyone or taking his clothes off I am good with it. 

I started using H as my security blanket. He wanted to sit in our lap so I took out his brush and started brushing his arms. He is relaxing but I just can't. I know there were so many articles and stories shared from my Autism friends and support groups I just never felt the need to read them because I never figured I would be here to need them. At this point I am winging it. I am racing with thought and suddenly I look down and see he is crashed out in my arms. I breathe. I let out a sigh of relief that suddenly I know he won't bother anyone and everyone here can enjoy the sermon without the possible distraction of my child. The biggest fear was H being such a disruption in a place we had never been and that first impression not being the one we wanted. He slept; he slept a good 75% of the service. I was good with that, far better than I had given him credit for. 

I feel bad that I didn't even give my full attention to the sermon given. Honestly I couldn't recall anything minus maybe a few announcements and them calling the children to take them to their class. I feel horrible I haven't given either one of us credit. I am so focused on "the what could go wrongs" or the “hope they don't happens" that I lost sight of the reason I was there. I was there to share in the experience that my husband had when he went on the retreat a week ago. I was so wrapped up in my fears that I was deflecting. I didn't see my child for whom he could have been during that service I was so anxious I was so busy preventing things I didn't let him experience the situation for what it could have been for him. Minus the trip to the small nursery to keep him quiet it went very well. That nursery however made me feel insecure all over again. It was unoccupied. The children were either sitting in the service or old enough to go enjoy the children's class. There was one other child in there but her mom was preoccupied in ensuring the horses that were tied up outside stayed put. I didn't take into consideration they might not have had a worker for the nursery I saw it as a sign, some stupid sign that I read too far into. 

As they served communion I gathered the things up of H's we brought to the room and had him sit with me. I believe at this point Chris had caught on and was a bit more insistent on holding H. I could sense he wanted me to participate.  I am not there yet. H maybe I am not. After all I am still so busy projecting my fears my anxiety onto my child that I can't see past that he might have actually handled a huge routine change, AND new place with minimal interruption. I am not giving him enough credit. He deserves it. I have to stop being so reluctant to try new things with him for fear of it not going the way it should. I can’t keep sheltering him and using my fears of being judged and or rejected to keep him from experiencing hurt. He is growing and changing. All the tools we have been given to help him are working. I just need to let them prove their work instead of dealing with the possible failure. However I need to stop making my fears his fears.

Hope for Hunter

I sat there in awe watching a 9 year old boy who has Autism ride into the arena. Until that moment I thought he was just a rider, there learning the basics of riding a horse. As the owner and I spoke the two children on horses rode about the big arena and I made contact back and forth with her as I watched in awe as this young boy on a horse that had to be close to 17 hands tall rode with such confidence and ease. Once he was out of earshot she told me before starting at her facility he was in a contained classroom and unable to interact with peers, lacked in social skills along with self help skills. He is Autistic and when we were watching him I would have never assumed at all. I can spot a child more often than not a mile away but this time he was not on my radar. How? He was following directions, riding a giant horse unattended, making eye contact, and the real mind blowing part... When asked to tie up the horse where he was placed prior to the start of class he did, he even was then quickly untacking his horse after dismounting the horse all on his own.
Three years ago I was told this was not even in the forefront of their minds. That it was all they could do to get through the session and get him to ride. I looked down at H and started thinking this could be him. I just smiled. I felt comfort and peace suddenly. My child one day will ride unassisted and be completely self sufficient as this young boy has. The goal of the program.... complete independence. I love it. I want H to find his way through this life. To not need us as much as we might think he really does.
Chris and I had a fleeting conversation recently, we discussed the kids leaving the house and going off on their own. We snapshotted each child's departure and how we would anticipate how it would go. When we got to H we paused. We simply said he would stay with us a bit longer than his siblings. It makes you a bit sad but I feel one day he could live without us, maybe with a roommate or in a group setting. Heck he might just surprise us get married and do just fine.
I went back to watching this young boy moving about taking the tack off and not showing any signs of frustration when he was struggling. In fact the look he gave one of the volunteers was so quick and so calm I almost didn't catch what had happened. A smile came across the boys face as he carried his equipment off. Wow! It is possible to face a struggle and NOT completely lose it and let it ruin the session, the moment. I started to feel more hope and excitement. I think this is it. This is the place we needed to be. It felt like home, it felt like family.
This whole evening my mind has been caught drifting back to the possibilities that are now in store for not only for him but for us collectively as a family. Doors could possibly open that we might have thought would be shut for him. His education could be just as his siblings when we thought special education would be the norm for us. To some it might just seem like riding a horse but after what I saw tonight it was more like riding into a future of hope and endless possibilities.

Actions hurt, but words cut deep

"Sticks and stones my break my bones but words can never hurt me." If only that were really true. Sometimes even despite our tough skin and high self confidence words hurt just as much if not more as the physical actions caused by someone else. When those words are said and they are about your child, your child with special needs, it is all you can do to hold back the rage and anger that overcomes you. The feelings of how dare they, how could they and what were they thinking? Also come to mind also.
Today words came from a educators mouth, one that doesn't even hardly interact with my child on a regular basis, that not only humiliated my husband and I but it also shocked and upset us in ways we couldn't imagine. Now that school is out for H the routine has been a bit shot despite the best efforts we put into place. Monday wasn't to bad and Tuesday wasn't to awful either it wasn't till later in the day did we start to see signs that he was having a hard time adjusting to the changes and routine. Today however it just sort of fell apart for H. H was hyper, aggressive and difficult to handle when he was around other children. He behaved in ways we have not seen in a while. It was to the point on my lunch break I texted Chris and asked if he was free the rest of the day after work to pick him up and let him relax at home so that everyone could just have a break. Chris gladly complied with the request and have as soon as he could.
I was sitting in a room doing some work when Chris showed up. I was among other colleagues when Chris poked his head in to ask about H. We had a small conversation and as he was turning to go retrieve our sleeping prince a teacher decided it was appropriate to suggest our 3.5 year old child attend a boot camp here in town for kids with behavior problems that was directed by local law enforcement and former drill sergeants. I was half listening as I was in the midst of my project I was needing to complete. I heard comments of scaring him straight, possibly working for at least a short time. I stopped listening and decided to burry my head in my work and just pray that Chris didn't snap and that this conversation would end quickly. Chris made a comment, surprisingly calm and stepped away to pick up H. I tried to brush it off, even more so when H came in to tell me good bye and hug me. I got distracted with my own set of issues and put it at the back of my mind till I clocked out.
As I walked to the car I started growing more and more upset and angry not to mention humiliated that she said that to Chris but also said that in front of people I work with. Chris was right there with me and said if he wasn't feeling sick to his stomach he would have marched right in there and gone off. I was proud of him holding his temper together and not acting on his impulses like he would have in the past.   The whole night it plagued us. In our own way it got to us sadly. I cried and Chris was angry. At first I think we both thought we were over reacting to the whole story but as we shared this with a few friends we quickly realized that we were justified in our thoughts and our plan of action. No one, especially one who works with children has a right to say that.
I will be the first to admit my child is no walk in the park, he exhibits behaviors that make you want to rethink parenthood and or your plans to ever work with children. However he is smart, funny and often fun to be around. All I could think about all night and look at was who he really was and what he is becoming. Yes he might have acted poorly at dinner tonight shouting and yelling "shut up and sit down and eat!" He also offered me the biggest hugs and ate like a champ. We celebrate the small victories and try not to put a lot of emphasis on the attention seeking behavior since we try to reinforce with the good and get him to see that he gets more attention when he does the desired things.
I guess if she thinks we need boot camp for us then I will let our pending ABA therapist know that we will no longer need her services. Boot camp will suffice and not cause any long lasting, or permanent damage because boot camp for a Autistic toddler is much more efficient and full of positive benefits. Seriously no amount of therapy would probably be able to fix the damage done to him if I did in fact choose to go that route, which of course I would never do. We have put too much effort in the therapies he has been in to even begin to want to do that. She sent her seven year old there good for her. No one ever in that sort of position will ever handle my child unless well he does something that involves needing law enforcement! Besides that place has been on the news enough due to crossing the line and doing damage to children!
Chris plans on taking this matter on tomorrow. Sleeping on it, collecting his thoughts, are what seems to work best for him now. How it will be resolved and what will become of this I have no idea, but you can bet that he will ensure this is resolved and that this teacher will learn that even in a joking manner or not there are just some things that shouldn't be said at all.

What would you do if?

What would you do if you were told you needed to get your stuff and get out ASAP, that a fire was near by and not containable? A storm was coming and could damage your home in a matter of seconds? Rain has been coming down for hours and suddenly your home is now a lake? What would you do? The last 36 hours have suddenly started making these things a reality for our family. Its hard to wrap your head around for just a typical family but when you have children with various medical needs and or disabilities its even harder to prepare yourself for.
Eight hours ago our very close friends were told they needed to leave their home for fears of a partially uncontained wild fire was headed their way. Chris and I stopped our evening to head out that way to help them. As we got ourselves ready to head out I looked at my teenager and started thinking about what would we do. As we drove home that evening from base we saw the smoke billowing through the hills in a field across from where we live. As far fetched as it might seem the way this fire is going it could be a harsh reality for us also.
I sat on my friends bed watching her figure out what she needed, her wedding dress (she is getting married in a few weeks), photos, clothing, all important documents for her and her children, and anything else she could think of in her moment of a controlled panic. Its all Chris and I could do to just ease the discomfort by adding light humor and our own sound advice as he is a fireman, I thought about more and more my two boys at home.
Before we left I found our notebook and packet with all sorts of information about H. I reminded Sean of the signs on our doors to alert first responders of H and his Autism. I put all his paper work, his back pack with a change of clothing, medication and his therapeutic supplies, the dogs leash and a set of house keys. I told Sean that there would be minimal to no cell service due to the towers being burnt down so to call Seth if anything happened. He was instructed to not leave the house without the three of them in tow and to only do so if instructed and to contact the emergency contacts if we were not reachable.
I began to think about the amount of pressure I just placed on my teenage son. They accountability he now has for our family. How my lack of preparation has now just sort of piled more responsibility onto him. However without batting an eye he was confident and assured me that this was all good. Thankfully that bag was not needed nor none of the other things but he was prepared if need be.
We sat for about 3 hours tonight at our friends house. Smelling the fire, seeing the smoke and watching the neighbors load up their cars. I watched children bring out bags and toys, I saw families with worry and concern on their faces, I saw friends and family come together and do what they needed to help their loved ones get to safety. It makes your heart hurt to see that. You never want to see someone lose everything they worked so hard to gain.
We know many of those out their on the front line trying to contain this beast. We pray for their safety and have faith they can put this out. We pray that this weather starts to cooperate and that we can get some relief to these folks. I pray my friend doesn't lose what her and her fiance have worked so hard to get. I pray that they are not told tonight to leave their home and pray for the best. I pray none of us have to ever face a situation like this.

This is our bag. This is just a small portion of what we would need if we would have to leave on a moments notice but this is just all what we would need for H if we had to go and had no chance to get anything at all. Tomorrow I am going to take some time and make sure we are fully prepared for anything that might come our way.   

Show your support

If you haven't heard its World Autism Awareness Day and April is Autism Awareness month. In honor of this day we do what we call Light it up Blue. You wear your blue, decorate blue, you find some way to show and share the support. For most families like us its a great day to get the word out about this ever growing disorder that now affects *About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network and *ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189) This is according to the CDC Data and statistics from their latest research. That is a pretty scary number if you think about it. Chances are you know someone, probably a family with a son, who has a child on the spectrum and either they don't know it yet or you didn't realize it.  
I have been asked and apart of many conversations and debates about the every popular Autism Speaks organization that leads the nation in Autism Research and is the name behind the every popular walks you hear of around this time of year. While there are many things I raise an eyebrow to with this organization and realize that not always does Autism Speaks, speak for my family, I do know what they provide to families resources that are very beneficial and I have utilized lots of what they have.  However supporting small local organizations and families is not something they do.  So why do we walk for with them and raise money for them?
If you ask most families who are given the news that they themselves or a family member is diagnosed with a disability, disease or disorder the first thing they do is look to the world wide web to find support and resources.  Most who are diagnosed with Breast Cancer look to the ever popular Susan B. Koman Foundation, however now they have been in the news for their own set of controversial issues, If you are familiar with Lance Armstrong and his organization for cancer, Livstrong, you are aware of the controversy behind that.  I have looked to Autism Speaks since day one for all our Autism needs not even aware there are other organizations, not really locally, that can also provide some great information and resources however they don't do the big walk that AS does. Not that I am in this for the walk, but just like the Race for the cure, Light the night, The 3 day I walk because its a feeling of belonging. I belong with these families.   Remember Cheers? " You wanna be where everyone knows your name? Well this walk to us is where everyone understands and shares support. 
I debated heavily this year on doing it or not. I am slightly competitive and while I know this is not a competition at all I was more in it to raise more money than last year and have more walkers with us too. However the more I think about it all my heart just isn't as into it. Chalk it up to a preoccupied mind maybe, but part of me believes its due in part to my new found thoughts and feelings on the organization. I love raising money for a good cause, however I would love to raise that money and keep it local. We have so many ASD families, ours included that could truly benefit from the funds to help cover the cost of therapies, doctors, aides, respite care and equipment.  Autism Speaks however doesn't do that for us. It's not their fault its not part of their organization. 
This year while we light it up blue to show our support, and we will continue to do so just like those wear their pink during breast cancer awareness,  next year we will just not fundraise for the big walk here in Abilene. I will walk because I want to be amongst those who get it and understand. I am not sure it makes sense but I just have felt so conflicted by it all.  I do have plans though. BIG plans or so I hope. I just need to get some thoughts on paper and some time to get it accomplished. 
I want to do a walk to raise money to help our families locally. I want to continue to raise awareness and help other families but to give them local resources and help them feel that they don't have to wait till April to connect with them.  I want to bring families together and utilize community resources, create more resources to help families year round. It is going to be a huge undertaking and one I want to take on so that families don't feel so hopeless here.  That there is something here in this community to help them year round.  I found my mission and my calling. I found a community that I can possibly reach out to and help an its an amazing feeling. So in a few months when I am pulling my hair out and stressed trying to pull this off can you guys remind me of this?! HA HA just kidding. I think........

Fives years, lessons learned

Earlier this week I went to my late brother's facebook page to see if anyone had been leaving comments in memory of the anniversary of his death. When I do this I usually scroll down and read all his last moments he posted on the world wide web. Its a bittersweet time for me. I can recall his final days and get last glimpses into what he was doing, but at the same time I can still see the day back in February that we had our huge fight for everyone to see. It was a stupid status update he posted out of anger towards me and instead of ignoring it and just moving on I took the bait and had it out with him. I have since removed my words because it was to painful to keep reading over and over. In a way though I think it was my way of trying to plague myself with survivors guilt and remind myself I am still alive and he is not.

I had mentioned this on my own facebook page and was told that it is hard to get over survivors guilt. That its something that could just stay with me forever. In ways I guess I am ok with that. It gives me the reminder that I need to never walk away angry, never say hate and above all at the end of the day say I love you! I guess you could say it was one of the toughest life lessons I have faced. It is a lesson though that has really changed how I view things and how I take on situations. Now that my children are getting older I want them to understands that words truly do have meaning no matter if you mean them or not, that actions can speak louder than words, and there are just somethings that can never be taken back.

Sean is almost 14 and about to enter high school. He has begged us for Facebook since last summer. We had a million and one reasons why we didn't want him to. However as the year dragged on more of his friends were getting it, he was showing maturity and responsibility and had his own email account I guess there was sort of the cave. Well not really a cave it just sort of happened on a fluke, which is a long story but in the end he was told that he would have to friend certain family members who don't post much and or wouldn't mind friending him. This would keep eyes on his world wide web adventures and alert us to anything that was not ok. So far a week into it I think we are doing alright.

Tonight at dinner, after a really chaotic evening, we got to discussing family. A week ago Sean had forgotten about Alex's death five years ago and was sort of still in shock by it. I thought he was joking and trying to be funny but he wasn't. He truly didn't recall that we had sat him down with his sisters a few days after his passing and told them what happened. We discussed that families love each other no matter what. He had overheard a conversations earlier and I guess he thought maybe I was done with my family. I explained we are never truly done with family until we are done on earth. They are family no matter what to us and we might not like what they do and say they are still our family and we love them.

He still wasn't getting it I guess in the teenage world if someone pissess you off they are no longer existent in your life. That can be said in our adult world also. So I used the absolute best example I could find and shared it with him. I shared it right there at our table at McDonald's and honestly at that point I didn't care who heard because it's a lesson for anyone to take home. I told him of our fight, I told him of our last time we saw each other, our last phone call. I told him how angry I was and how I said and posted things now I can NEVER take back. I told him I had no idea less than a month later he would be dead. I told him there was no going back and that even though he is family and I know had forgiven me there will never be the words spoke to me that says that. I would never want him to be in that situation. I would never want him to have to deal with that when it came to his family and even his friends. It's a horrible pain to have in your hear.

I was pretty proud that I could give that speech without a single tear. I wanted him to know I was speaking without my emotions taking control over me, I wanted him to see more of my hurt than sadness. I believe that our children read us and understand best when they hear things from us with our true words and not the heavy emotions that may be coming out. I believe that while yes he is still a young teenager that he was more than capable of handling that conversation. I want him to know how real life is getting now for him. I want to use as many real life experiences to convey this to him so he can see just how real it is. I know a time will come when all of his siblings will join the Facebook world and I want them to use it for good.

And while yes we can delete and remove things that doesn't mean in other ways they are not still there. Facebook has come a long ways since then. I know that you can go back now and see my words are gone but his are still there, I know that for anyone who saw his page that day saw what was said. Do they remember it? Who knows but it's that face that others have that ability. That is what I am now stressing to my children. This was a good lesson for me, even as an adult.

Through his eyes

I am sitting on the couch of my livingroom with the front door opened. I am doing something I normally don't do but today I let go and let someone else take charge. H is in the front yard with his three older siblings and his dog. I would never do this not with his inability to understand danger and his lack of ability to grasp our tone of voice to alert to danger or scary situations. Today though with the pleading of his two older sisters I caved. I let someone else take him outside and be responsible for him while I sat in the house. I am keeping him in a visual at all times but he is entranced at the moment. 

Suddenly he is not compelled to run down the street or bolt from anyone. He is standing there on the porch engaged in a tube of bubbles with his sister. There is something about it, something about the interaction with this siblings that is different than the interactions with me or a teacher, he was engaged truly engaged in what Ella was doing with him. He wasn't looking for a distraction to make his break, he wasn't getting upset because she was distracting him from that break he wanted to make. What I saw at that moment was a boy and his sister sharing a true bond. I saw his hands flapping wildly, wide eyed anticipating the next big blow of bubbles to come. I saw a true calm come about him that I rarely ever see. He was relaxed in a way that he couldn't do when I tried to interact with him on that level. 

I could get upset and offended at this scene unfolding in front of me. I could feel hurt that he can't do that with me like he does with her. I could lose myself in all that negativity or I could embrace a moment that I don't get to see all that often. I sit and stare and feel my smile growing. I see a calm on his face that lets me know he has made a connection and he is embracing this moment just like I am. I wanted to run and snap a photo of this curious, quizzical moment. I always take pictures its my schtick. There is always a photo to remember almost every single moment. However I let him have this moment. I let him have it intruded moment with his sister. I can close my eyes and see that face, those hands reaching out to explore and seek out the bubbles coming at him. The eye contact he engaged in with Ella. Neither one knowing just how important that was. I did though and I smiled from the sidelines and had my own moment without intruding upon theirs. 

Sometimes these children open up when we least expect it. Sometimes they open up when they don't feel they are center stage spotlight and every moment is watched with an eagle eye. Ella was able to reach him on a level I have yet to reach him at. It was a carefree let's just be us and not world about the rest of the world around us. I have lost myself in their moment, basking in their laughter, their conversation, their true connection. The moment has now long passed and they have moved on to other things. I am still sitting here with that image smiling thinking of how all this happens, through his eyes. 

School is in, Food school that is!

Tonight we had our monthly Reach for a Difference meeting. This group is my family! They are my biggest supporters and have been there for me these last few months. I would be so lost without them. Tonight we had a guest speaker that I was so excited hear. Amy Gibbs is not only an Occupational Therapist at West Texas Rehab, she is also a friend of mine and she does amazing things for the children she works with. Tonight she was discussing Food Therapy and educating parents and educators on this up and coming therapy.
As I am sitting there reading the power point slides and listen to her speak I instantly start thinking of my darling 3 year old that has created his own guidelines for eating. Apparently he is just about the poster child for this class. I was asking questions at the end and all I have to do is call up our old OT and let them know we need  a reevaluation for food school. Who knew it would be so simple. I wish I would have thought of this sooner!
This would be a twelve week class that would be super intensive and very, very regimen and routine. This is what we need for H anyways so I think he will be quiet successful in this venture. The down side is there is of course, there is only one certified therapist at this point so the demand is high and the space is super limited. By Spring though there should be two more certified therapists so this makes me happy to know our wait time will be pretty short and with session starting every 12 weeks.
I am excited to make this call tomorrow to get the ball rolling. It's not that I am looking for more therapy but I am wanting to make sure that H is able to enjoy a fully rounded meal that he can enjoy and that is nourishing him. He is barely 30lbs and his diet is chicken nuggets, not chicken strips, bean burritos, easy to swallow foods like yogurt sticks, fruit pouches, and gummies but only certain ones. This therapy will teach him to think outside the box and help him open his mind up to more textures and foods. It will teach him its ok to get his hands dirty and that foods are allowed to touch.
I am so thrilled at these learning opportunities I am getting. The more I can learn the more I can help H and others around me who might not be aware of these things. I love being an advocate and being able to help others. This is definitely information worth passing on to others. I can't wait to get this all going and get H started in this program so that I can help him and hopefully use what he learned to help someone else!

Fear and Self Loathing

There comes a time in every mom's life that despite your best pep talk you just can't pull through it. You have to throw that pitty party and let yourself get down just a little bit. You begin to compare yourself to the mom next door and it just adds salt to the already painful wound you have begin. Inept, a total feeling of not being capable of doing your best and failing your family because you strive for perfection at every turn. At what point do you break the cycle and tell yourself you are just as good if not better as the mom next door? At what point are you ready to except yourself as the best as it can be?

I have been in a funk and realized my responsibilities are spiraling out of control. The laundry, the dishes, the house work, the home cooked meals all just sort of took a hiatus. It seemed like I honed in on any and every excuse to avoid the responsibilities I needed to do to be the best mom I can be. Can't reheat leftovers because the microwave caught fire Christmas Eve and I have been to lazy to get the replacement from a friend of mines house. Why not use the oven? Well ever since that stint of overcooked meals and setting off the smoke detector I have been a bit gun shy about giving the oven a whirl to see if the maintenance man actually fixed it, that and I recall my teenager saying the guy mentioned something about lowering the temp x amount to ensure that I was not over cooking but I have yet to get the official word on it. Laundry, I have pretty much just washed what I need for the week all in one load and let the rest of the stuff pile up. I have things from Thanksgiving I believe that still have yet to be hung up or possibly washed. Let's not even get started on the bedroom. Its the catch all now, you name it its made its way to any possible shelf or basket made available in my room. One might think a teenager took residence in here while my teenage son's room likes surprisingly organized.

I was about to leave the house tonight to go see Chris and I hopped on FB to see what I had missed. I came across a post on a page I am on about fearing CPS investigating because the biological mom to her step daughter decided to flip the investigation on her around to them and she wanted a checklist to ensure that she met CPS' standards. The responses to this was quiet an eye opener. I swear if this stuff was accurate I am screwed! My floors have not been moped in lord knows how long, laundry scattered all over, food is upstairs down stairs and anywhere in between ( H likes to take food and hide with it), dust covers a majority of the items however this is mostly in part because we live in West Texas and the wind and dirt blowing is insane! Stained carpets from the pets and the children, and the busted up door frame from a very angry child who thought it would be awesome to pull an Incredible Hulk stunt on my front door! I started thinking of what might happen had someone snuck a peek in my house. It made me shudder. Would my parental capabilities really come down to the overall appearance of my home?? What would they think when they see my three year old standing on the fridge with cereal bar laughing hysterically at his accomplishment?

It was at this point I realized it's time to snap out of this! I needed to sit down and devise a plan with my teenager and conquer this mess. I need to get over my laziness and put my inadequacies aside and take on this house head on. I can't and won't upkeep this home on my own. There is not enough time and energy for one person in this day to do so. If that is the case might as well call me Cinderella! My list making in my head was growing while I was driving and I had no possible way to jot it down. I figured that it was important and once home and settled for the evening it would all come back to me. Well here I am and I am drawing a blank on just what it was I wanted to accomplish and how. My motivation and drive stalled out.

When I was thinking about this I was thinking that my situation is far more different than Jane Doe down the street. Sure her husband is deployed and she has a son around the same age and she works, she also doesn't have the same situation by far that I do. She doesn't have a child who has special needs that is completely destructive and goes non stop, she doesn't work the hours I do and doesn't have the extras in the evening that I do. I tell myself I am doing good if I can get just the living room and kitchen clean in a three day span along with a load of laundry and dishes out of the sink. The kitchen table has three spaces cleared for eating while the rest of my essentials bogart the rest of the free space. My kids are happy, they are loved and are tended to. They might not shine and sparkle but by god they are fed, clothed and  provided for, I would have said bathed but H is still sort of hit and miss on the bathing thing. It's an act of god and a whole heck of a lot of bribing to get him in that shower. The rest however is done daily without a second thought.

Sean made a comment while at his dad and stepmom's house over the break. It was a Friday night and apparently the house was a party house. Sean said it was just like being back home and when asked why it's because mom or in this case step mom was doing it all. Making dinner, cleaning the house, and making sure everyone was tended to and happy. He said he was glad he wasn't a woman because apparently being a woman sucks. When she said that his dad works hard he said not nearly as hard as we do.  As I was feeling down tonight and that I just plain sucked at this job I thought about that and realized he is right. Our job does suck but we do it and we do it well so we should be proud. I probably would have felt even more proud coming home tonight to a clean downstairs and not a Thomas the Train ridden living room.

After dinner I started cleaning and without much coaxing and prompting my oldest joined in and started picking out all the junk that had collected over the course of a few days. It was a vast improvement, not a CPS, white clove improvement but an improvement none the less. I need to stop riding myself and being so dang critical of how things are going. My kids are so supportive and know I do my absolute very best. They are my biggest fans and supporters right now. I think parents of special needs children ride themselves just a little bit harder than those who have typical children. There is like a standard we feel we must reach to feel self worth and accomplished compared to those mom's. Like we have even more to prove because our children are already " less than perfect" so if our lives are "less than perfect" we are the reason our children are the way they are. I however believe each and every one of my children are the perfection that they should be. I don't let their imperfections dictate how, I myself as a mom, feel I am doing.

I will admit when I start going down the list of things: Child who climbs and hides, breaks the door frames because he is so out of hand, pours out beverages on the carpet just so he can stomp in it, the dog who barks incessantly because apparently we are not training her well, the pet stains our dog leaves because she thinks its a fun game for me to tend to while running late in the morning, the clothes all over the bedroom because H is out of control because of routine changes. It does start to bring me down. However I do realize I don't need to justify myself to anyone. If they want to question my abilities I would, in return like to challenge them to fill my shoes for a day and see if they can do any better. It's not to be snarky, but more of a see it's not so easy and I do the very best I can.

I think the new list of rules and responsibilities for all of us in the house will be a better way to hold not only my son accountable but myself also. Then we truly have a way to hold our self  accountable and not fear the things that make us feel so poorly about our self. Living in fear and hating yourself is not a way to be. We have to learn to be more proud of what we do and who we are and where we come from. Everyone has a different story. Some are more simple than others while others are so complex its mind blowing to figure out how they even get up and go every day.

I don't make New Years Resolutions but maybe a goal of mine for this year to to find the good in me and what I do instead of riding myself for the things I haven't done and have yet to accomplish. Maybe this will help me stay more focused and driven to become the parent, mom and person I want to be.

Food Allergy you say?

It has been asked why I eliminate food dyes from H diet. After lots of reading and research I discovered that most children on the spectrum and with sensory disorders have a higher sensitivity to dyes especially red and blue. After eliminating those we saw huge improvements in H behavior and manageability.To help you understand just how sensitive he is to this..... today he found a a plastic candy cane filled with red and green Spree candies and that he couldn't get into his mouth fast enough.Yesterday he found a candy cane on the floor of the truck and quickly popped it in his mouth however I quickly snatched it out and earlier this week getting out pf the truck H found a tiny green M&M on the sear within an hour he was anxious aggressive and out of sorts. Anything and everything set him off. Also this week he got into a sucker that his sister accidently left out and he hid under his trampoline for a while munching away on it. 
It could take a few days for this to get out of his system and until then we just have to roll with it and wait for it to pass.We ( us and his doc) call it an allergy due to his reaction to it. There is no rash or anaphylaxis just severe behavior and mood effects. Some think it's hokey and excuse. I say until you experience it first hand don't judge. This has become something of a touchy subject for most. Those who don't understand tend to just think that us as parents are making excuses for our child. 
Just to sort of give you an idea of how much of a difference we see when he get into these things on a typical day H handles most transitions well, his behavior is not to severe and he can stay on task for short periods of time, aggression is lower and so is impulsivity. These last few days he has been climbing on anything and everything, anytime we go from one thing to another he gets wild and out of hand and takes several moments to calm down and get into the grove, he has been so aggressive to myself and others its been very painful. He just is all over the place and his tendency to be echolalic and recite scripted things is more noticeable. 
The next few days will be exhausting for me because it will take forever for  this to move from his system. Actually that is an exaggeration it will take a few days but it will seem like forever.  We will have to be as routine and structured as possible to avoid any further issues which is good because tomorrow we are back to our normal routine and that should help us when it comes to dealing with this. We must be very diligent with what comes into our home and what he comes in contact with. 
 Nothing he is unable to have will come into the house this means treats from friends, school and goodie bags from parties. If there is even a remote possibility of H getting to it we will politely turn it down. We worked so hard for the last year to stick to this and in a matter of a week its all gone to the way side. It is very frustrating and hopefully a week from now we can be back on track.
I generally now keep things in his bag that will be sufficient for him when going to various outings. If I know that the family is unaware of his allergy I find him a cupcake so he can at least have the sweet treat. I also know most parties include a candy filled goody bag so I make sure to find him his favorite cream soda dum dum suckers and some of his gummies so that he can enjoy that once the party ends. If I know pizza will be served I bring him chicken nuggets, we also have a tomato allergy and this one is an actual break out in a bad rash, allergy. I do what I can to make sure he is prepared and able to have as much fun and not feel left out. 
I would really encourage those who are prone to freely hand out food and treats to children to stop and ask the parent and double check to make sure its ok that the child has it. With food allergies and aversions becoming so prominent these days. Not just the food dyes but Gluten, dairy, nuts etc. I never hand over food until I get the ok from parents, when I plan parties or get togethers I always double check to make sure there are no specific allergies etc so that I can include that with our menu and plans so that everyone feels included. Nothing is more depressing to a child to show up at a party and not be able to have say the cake, or food even the beverage. If you aren't able to accommodate at least let the family know so they can plan accordingly.

Time flies

Yikes two months almost since an update. I had every intention of posting a holiday update but things have gone upside down. Our world suddenly changed in ways we had never thought possible. The last time I updated was the last time our family was together and seemingly whole. This update we are apart and broken. I did however manage to pull us through the holidays unscathed it seems so for now that is all that matters.

To list off all the changes as to make it easier I will do it this way:
1. On November 23rd Chris left for the hospital for PTSD treatment. It has been 40 plus days, lots of battles but the VA was finally able to get involved and hopefully by mid month he will be at a full fledged VA hospital here in Texas receiving the treatment he needs
2. Our beloved German Shepherd, B, had to be re homed to a wonderful family friend due to an issue with him and another dog. This issue has resulted in me paying a 600.00 vet bill and devastating my children on the loss of our beloved family family member.
3. We have tried to launch a CPS investigation for abuse towards H after finding hand print bruises on his rib cage and back of his thigh. Since this happened right at the holidays this has sort of stalled out so there is not much of an update to post at this time.
4. Twice in the month of December our house nearly caught fire due to cooking appliances. One due to the faulty stove display over cooking food by at least 100 degrees. The other was due to a frantic Hannah trying to make her brother oatmeal and forgetting the key ingredient (milk) and proceeding to cook the oatmeal for 2 minutes!
5. Two of our four Guinea Pigs died right before our eyes and it was heartbreaking to my daughters to see this happen. However the silver lining was they learned how important pet care and health is and have been very diligent with the GP since then.
6. We spent the holidays without Chris and survived, barely, but we made it. It might have been a nightmare for me but I think the kids enjoyed it and were just glad to be all together.
7. I started blogging about the things that have been going on with Chris. The other side of marriage, dealing with a spouse who has a psychological disorder due to his 14 years of service.  http://ptsdandmarriage.blogspot.com/ it is written with my own thoughts and emotions as we have navigated these new unchartered waters of getting help for his PTSD.

This has been our life for the past almost two months. It has indeed been action packed. Tomorrow we resume our normal schedule, the kids are back in school and extra curriculars are back in session. I have never been so excited to see a Monday in all my life! I can't wait to get those kids on the bus and just go back to how things were before the chaos of the holidays. The only part not normal is Chris is still gone. He will more than likely be gone until around March.

H has had a hard time adjusting to all the changes but he is doing better. We have had so many things he has had to deal with so I believe it is more than understandable that he struggle like he has, throw in a two week break from school and it just adds to it. We however found an amazing support team through all this and are so very thankful for each of them. While I pride myself on doing it all on my own I glad to know I have people I can always call on in a pinch. I can never thank them enough for all they have done. I am so honored to have such wonderful people in my life.

When is it just to much?

I am always thankful for those who follow our story and support our mission to create awareness. Our goal from the get go was never to get pitty or to make others feel sorry for the cards we were dealt . In fact we hope to inspire and help other families above all. However sometimes our mission gets marred when others take advantage of support blogs/pages. It is sad but there are those out there that unprofessionally diagnose their child, create symptoms for diagnosis's that aren't really there and exaggerate and elaborate on details to get that huge "Oh you poor thing." factor. Those folks tend to put the rest of us in a negative light. 

I never in my wildest dreams thought this journey of my last born would turn the way it has. While our start was a bit rough and a bit scary, again I really thought that would be the end of it. Minus our breathing issues. Autism and all that has come with it was the furthest from my mind. However I can recall one instance sitting in my class in my second semester of college when the thought of Autism came into my mind. A friend of mine, co worker, babysitter, had been talking to me about H and his struggles with speech etc. She had asked about Autism. I said if things didn't improve we would take that route but until then it was just delays due to premature. That was in the winter of 2012. Later that spring is when our lives started to change. Evaluations and testings in its early stages would start to reveal the delays that I was hoping were just in my head would not actually be factual. 

Even with all that we started finding out, our mission was always clear in our head; AWARENESS, AWARENESS, AWARENESS!!! If H actually had Fragile X we wanted to be as informed about it to learn more and start spreading the word on creating awareness. However after two different genetic testings, despite his physical and developmental markers for the disorder, H did not have Fragile X. We still remain apart of the support page as we made some great friends and learned a whole lot about it all. Then we heard the words Autism and Sensory Processing. We went into it with caution and research, we had already been through the stress of one disorder so until we knew without a doubt we kept cautious of what we were dealing with.

Once we we knew what H was dealing with of course our mission was clear. Spread the word, raise awareness and do anything and everything we could to help him. Let me make this clear we didn't/don't want pitty. We want to help him and our other friends we have met along the way be the most successful they can be. I won't embellish details, put things in that aren't there, be deceitful to gain services we wouldn't otherwise qualify for. Sadly we have come across these types of people and it is sad because essentially they are taking away from the other families that aren't able to because the time and therapists are being taken up by those who really don't need it. 

I know as a parent we want to do what ever we can to get our child all the need to succeed however when is enough, enough? When is to much, to much? When is it considered overboard? I have encountered families that have actually lied to get more for their children to create things that aren't really happening to get more out of therapies and out of people. Some would ask "What type of person wants something to be wrong with their child?" " What could one possibly get out all this needy deceitful antics?" At first I am sure they get what they want and then as time goes on hopefully those around them start to see the truth and realize some people are in this for the attention apparently there is some sort of glamour in the disability world. 

I ask those who follow our story to know that what I post is 100% accurate and true. I share the good, the bad, the ugly and of course the unexpected. I try to give a good balance so that the real picture is shown. Autism is not the end of the world, in fact it is the start of a new one for us. Autism has opened our eyes to so many things and in a way we are grateful to this. Its taught us to slow down more and appreciate things we wouldn't have in the past. We have learned to see things in a whole new light.

Autism isn't always this downer and horrible things. There are some wonderful moments we have encountered. I encourage those who follow pages like mine to be leary of those who constantly post the downs, the whoa is me posts, the things that just seem off. There are just some people out there who want some form of attention and its not about their child its about them. Of course most of those who follow support pages like mine aren't familiar about the diagnosis. Utilize that as a time to learn on your own what it is to form more educated thoughts and opinions. Ask questions to the people you follow. You can learn a lot about the people you follow by asking the straight forward direct questions without coming off confrontational and rude. Do this especially if you plan to give monetary donations and such. I would hate to see that someone got scammed. In the past when we have been provided monetary donations we sent proof of purchase to those who donated so they could see it was put to good use then when we were able to show pictures of H utilizing what ever it is we might have purchased with donations. 

I know this is not the typical post I share but after some recent situations and information I have been seeing I feel this is important especially with that holiday season upon us and people are feeling more inclined to give and reach out. Speak up of things seem off. I know that there is a person I have encountered on this journey that has pushed the limits and made others scratch their heads in wonderment. It has really taught me how to read people and situations more so that I can make a more informed decision on who to support and follow ourselves on this journey.  

Don't be sorry....

"I am so sorry", " I don't know how you can do it."," You must be a very strong person.", "Do you ever just wish it was different?"  As a special need parent these are some of the most common things we hear. They are usually from well meaning individuals, family, friends and strangers alike. While I realize they probably mean no harm in their statements it just becomes unnecessary and awkward. 

We aren't sorry for the child we were given. We do it because we are the parents, it is our job our duty our RESPONSIBILITY. We do this the same way would we would raise a typical developing child. I don't feel I am any stronger than the next parent to do what I do. I think or I would like to think that any other parent in our place would do it, I know however in reality this is not the case but I always believe that this is how it should be. Never, ever ever do I wish this was different for us. This is how it was suppose to be so why would I want to change it. There are days that it gets to me but then again I think regardless of what my child is diagnosed with I am sure I would wish the that things were different. However this is how my child is, this is who are family is, this is what our lives are now. Nope no need to change it. 

My mom called tonight. We speak once a month or every six weeks. Gasp and tell me what a bad daughter I am but I have my reasons and do not need a lecture on how I am a cruel daughter for my estranged relationship with her. Anyways she had just had a friend over with her 6 year old Autistic son. Gathering from the tone of voice and the call he has to be much more severe than my child. She hasn't seen H since he was a newborn so she really has nothing to base anything off of unless my family has mentioned his behaviors and diagnosis to her. She proceeds to say how sorry she is over and over. I reassure her I am fine and that really its going to be ok. At this point I feel awkward because she honestly has no idea what we endure day in and day out.

After she tells me about the visit I have to start the explanation that he is a lower functioning Autistic. I only assume this from the behaviors and the lack of potty training etc. My mom was baffled that I knew so much about this child I had not met. Hmmm lets see everything she described, my own personal knowledge and now training in I think I have it covered. She seemed so amazed by it. She still actually has no idea what our daily life entails she just thinks she does because of a visit from her friend today.

She asked all sorts of typical questions that we get from people who don't know us well or have no idea the variations of this spectrum disorder. My mom is old school and not hardly capable of using a computer let a long a smart phone so her knowledge base on Autism is very outdated and very Rainman esque. I explained his quirks as you will and she seems to be grasping more that my child is nothing like the 6 yr old who was at her home today. 

Once I finally got my mom to actually listen to what was being said she started to grasp what we deal with on a daily basis. I told her you meet one Autistic child you have met ONE Autistic child. I said while yes these two share similar quirks and such that they are both on opposite ends of the spectrum. Regardless it is a social disability that effects social skills, cognitive and some motor skills. Again since she has not seen H since he was a newborn really has no idea what he is like. She kept wanting to talk on the phone with him and I had to explain this was not going to happen as he has no face to put with the person and will not answer her questions unless they are his desired topic, she finally understood this. 

After she and I ended our conversation, H was running around outside of our destination climbing and getting very excited, I really started thinking more about her call. I know she was prompted to call because of her encounter today. I can only assume she felt genuine concern of us because of what her friend endures on a daily basis. I know she wants for this relationship with him and myself. I however am not sure I am ready for it. I don't want the relationship out of pitty and feeling sorry for us. We get along just fine and I don't need her to give the tone of the "oh woe is me" to all of it. We are not dwelling on this at all. We embrace it and claim it as our normal life. I never want H to think we should dwell on this or that its his fault at all.

So please if you ever encounter a family who has a child with a disability don't pitty them, feel sorry for them or make them think their life should be different. Help them embrace it, encourage and support them. This was the hand they were dealt and they are making the absolute most of it so you should also. 

It could happen to you...

Since the start of the year it has been filled with up's and down's. More so than any other year I can ever recall. This says a lot because I have gone through a lot in my adult years but this one sure is one for the records. While it has not been the picture of perfection it has given us a lot to be thankful for and a lot to learn from. 
At the start of the summer life had become tough, so tough we had no idea where we were going to end up and what was going to happen. Good people, LOTS of good people were looking out for us and helped pull us through that very tough time. Thankfully those tough times have been put behind us and we move forward once again. Those tough times however brought to light things we needed to focus on and helped us realize what we need to do make sure that we don't encounter this again. 
With that said this year has been full of pleasant surprises and lots of good news. In March I was nominated for employee of the quarter not only for my center but for my squadron, group and the overall base. I ended up receiving that in each category. I have been told this puts me in the running for employee of the year for my category which would be even more awesome. In April we were granted money to obtain several things for H. We got his riding covered along with much needed therapy items. H also got into the PPCD program at Head Start which we were very thrilled about because we knew he needed extra help and this was exactly what we had hoped he would get. Just recently I took on a lead preschool teaching role and I have been so excited about the opportunities it has given me.
I think however the icing on the cake for all of this was the phone call I received this morning. I generally put my phone on airplane mode when I am at work to preserve the battery. As I flipped my phone back into working mode I noticed a VM. I assumed it was Sean's school notifying me of the schedule change etc. However it was a lady from KTXS tv station here in Abilene. I at first thought this was in reference with stuff I am doing with TLC so I just sort of backed out of my parking spot and proceeded to get my lunch. However as I continued to list I realized this was not exactly about TLC this was about ME! 
It turns out someone, possibly my husband, nominated me for WTU Electric volunteer of the year award. I am now one of the five finalists. They talked about my work with TLC, Reach and my own group The Spectrum Connection. How I work full time, go to school and have my own special needs child and give my time to help those in the community all at the same time. I started crying and shaking. I had never before ever been nominated or considered for something like this so to be a finalist to me is HUGE! 
I spoke to KTXS this evening and we discussed a tentative plan for next week. They want to come out to TLC see what we do, meet my family and see what it is I do. So I will know by Thursday what exactly will be going on. This segment will air a few times till the winner is announced. They will have all of us on sharing our story. I have no idea if this is a voting process or what but still I just feel honored to be top 5 right now. 
So what do I get if I win you might ask? I personally get nothing. The Legacy Complex will get a very much needed $5,000 award. That to me is enough of a prize so I am perfectly ok with that! TLC has done so much for our community I am excited to know that they very well could be given this award me. 
So now that I am starting to come down from this amazing high I need to start focusing and thinking about what I am going to do next. I want this to be the most amazing interview that captures everything that I think matters to myself and my family. I want to make sure our special needs community is given the recognition it needs. This is something I don't think in a million years I could have ever dreamed could happen so for now I am just going to relish in this moment!

Doctors VS Schools

September 14th was my last update. So needless to say life has happened since then that has kept me away from my blog sadly. However not all of that is for a bad reason. I have taken on a full time preschool position, H has been busy in activities along with Seanman and between all of us in school we just need to prioritize. 

Over the last few weeks I have been posting about the schools results on what they believe H will be labeled as disability wise. Hold on, you say, "wasn't he already diagnosed with PDD-NOS and SPD and APD?" Sure of course he was after two days of testing with other testing sprinkled in there by trained doctors and neuropsychologist. So basically I have taken their word as gospel at this point because well this is what they went to school for this is what they are certified to do. However the PPCD program feels they must do their own evaluations and testings on him to ensure the Autism diagnosis. I wonder if those who are deaf or whom are intellectually challenged have to go through this same series of testing. I mean seriously how many times must a child, a family endure this testing? 

When I posted on H's page late last week about meeting with the school to go over their test results most people who responded were baffled that he needed to be tested despite what doctors, trained professionals had already diagnosed him as. I was warned of this from ECI prior to going through our initial meeting and our ARD. I was worried because what if they happened to catch him on a good day and they say he is fine and that I am crazy? I still would stick to what the doctor had said and just continued to fight our fight for him. When he was accepted I was so relieved and thought most of this was behind us. 

Several families said that when their child entered the special education program all that was needed was the actual doctors diagnosis and all the results that were given. Makes sense right? I mean I know their job is to base our IEPs off of their lacking abilities and to get a clearer picture of the child's needs. However while I respect that as it is very needed to help my child succeed I feel that they are trying to over ride everything we have spent countless hours obtaining,  the mucho money that was spent and all the time we had to travel. Today for example a friend of mine here in Texas received a call from their child's school stating since their child had the best penmanship in the class and was so very smart their child was not Autistic. This was by far the most insane thing I had ever read! Granted my child does not have much in the way of penmanship he certainly is super smart. I am sure hoping in this instance it was a very unqualified teacher calling and not someone who is trained and qualified who made this remark to the parent. 

If you have seen one Autistic child then congrats you have seen ONE Autistic child. This is spectrum disorder. There are various levels of this disorder from severe, minimal to no self help skills or communication skills and lacking even the most basic in coordination to moderate/mild, more self  help or fully functional skills, communicating and fully coordinated. Does that take away at all from what the underlying disorder is? NO not at all these children all lack the same thing social skills and the basic ways to properly interact with others around them. That on top of other things is what this disorder is about. 

Last night we went to a friends house for a Halloween playdate  and to have dinner. My friend has a son who is a little older than H and he is on the more severe end of the spectrum. While he was more severe than H they both had similar quirks about them. Another little boy who was just a few months older than H came who was just diagnosed on the spectrum was more along the same lines of H as he was more verbal and same hyperactive but he was not as into climbing as H, and he had more meaningful speech, H had a lot of scripted speech last night or using phrases that he had heard us say and was using them. All three boys on the spectrum all three boys with various strengths and deficits.  Up until that last half hour we were there it was the quietest playdate I had been to in a while as they boys didn't interact much did their own thing or were engaged in the movie. 

I completely understand the school wants the full picture of what is going on with H. I mean who doesn't? However no matter what they come back saying it isn't going to change what we were told back in January. I am already a little leary of what will happen next week when we meet for our ARD meeting to discuss his results and his new IEP. I was told last week no OT was needed! He was in OT twice a week up until school started and that was only dropped because it was going to conflict with school.  I plan to address this as WE (our team) fully believe he needs OT at school. Especially when it comes to the oral part of it. He sensory seeks this way and we want to make sure that his needs are being met with his chew tube and or Z-vibe, even being able to use his vest during those times help. 

Before my naysayers jump in and tell me that I am being to hard on these educators I believe I am entitled to feel this way. I know what it means to be an educator. I am one. I do observations and assessments of young children all the time. However these are brief snapshots of their abilities and weaknesses. Does this mean I am qualified to tell a parent that their child is to disabled or just so far above the other children. I simply tell the parents of the red flag I see and encourage them if need be to get more help to ensure their child stays on track. I know that PPCD is for those with special needs so their qualifications are of course different, however sometimes I feel that they have become so immune to what we as parents have gone through with our child to reach the point we are at. They only see their aspect of it and forget that we are the ones that have endured this day in and day out and gone through the hell and back we have to get them all they need to help them do better. 

Earlier this month Reach went to the AISD school board with our proposal to get more Autism awareness/education in the classroom. I am hoping that when this is approved these educators can really see more of what us as activists and families go through to help all these amazing, brilliant children who are such an important part of our lives. I am truly holding out hope that this will be the push we need for them to start seeing that regardless of what their papers say these are who these children are and no matter what level of the spectrum they are at they still need their help to get to where they need to be and meet or surpass those goals set in place for them. 

A opportunity to teach!

I enjoy my role as an early childhood educator. I have spent a lot of time educating myself and attending as many trainings as I can to stay up to date on what I need to know. When I am skilled enough I enjoy teaching and sharing with others my knowledge. I want others to have the same info as myself so they can in turn help those around them. Its how we as educators operate. 

In January of this year I went to my fellow ASD moms, the ones I knew were wanting to spread more awareness, educate and share their knowledge. After some talking I said I wanted to put together a group a special support group to help other families, to help others and to create awareness. We created a page shared our stories, tips, therapies, helpful info and other news stories relating to topics we had discussed. I have been so proud and excited to be apart of this. Every time we came across another family we would guide them to our page so they could meet other local families in the same boat. Since most of us are military affiliated this has been a big thing. 

About six weeks ago a lady was on our FB page and emailed us about speaking at her church preschool. I wanted to write back at first and respond that we couldn't do that, that we are not qualified to help these preschool teachers. As I was typing it out I was thinking to myself " Dummy! Who better than us to talk to these teachers and help them better understand!" I wrote back that I would like the opportunity and asked what would she like to have discussed. I began mapping out and asking the other parents if they wanted to help. Unfortunately due to scheduling issues etc no one but myself and another mom were able to help. I was still thrilled at the chance to really finally get to share my knowledge of everything I had learned thus far. 

This morning I ended up flying solo for this event due to last minute glitches with my friend Stephanie who was going to help me with this project. Luckily I was prepared to do this so I got up early organized my material and headed out to my destination. I was excited and nervous. This was my chance to make an impact with these teachers and really tell them all I knew and all I could do to help them! This was my chance to make the difference to be the difference. Now to make sure I could do this for the next two hours and I would be good to go!

I stoop up briefly shared about the spectrum connection and how we came about, I also mentioned about being with Reach for a Difference and how we go out into the community and really do what we can to be the difference. I also shared about our journey and how this has been a huge learning experience but that hopefully the information I have brought them will help them see what exactly it is these teachers need to be doing. 

We covered so much stuff and unfortunately due to the lack of internet the videos I had set up were unable to be seen. However I did my best to tell about what we would have watched. I could tell that I was throwing out a ton of information to them and hopefully they were able to retain most of it. I talked about room arrangements, least restrictive environments, tantrums vs meltdowns, ECI, developmentally appropriate stages, warning signs, inclusion and difficult behaviors especially with children who are non verbal. They seemed shocked at the things I was throwing out there but I was getting some good feedback at the same time. 

Standing up there really made me feel powerful. I felt this overwhelming since of pride knowing I was sharing with these ladies my information my knowledge to help them better help the families they work with. It really was a rush! If I was asked again to speak I would do it in a heartbeat. Having that ability to share with others and teach them its a powerful and amazing thing. I only hope to get more opportunities like this in the future!