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.   

Wednesday, April 2, 2014

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........

Wednesday, March 26, 2014

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.

Sunday, March 9, 2014

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.