Sunday, April 5, 2015

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.

Saturday, March 7, 2015

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.

Saturday, January 3, 2015

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!

Monday, November 3, 2014

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.

Tuesday, July 15, 2014

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.

Wednesday, June 4, 2014

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.

Monday, April 28, 2014

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.