thankful

This is going to sound a little strange to some of you and you might even find yourself crinkling up your nose at what I’m about to say. Others will understand and quite possibly agree.

Autism is something I am most thankful for this year!

Why would I be thankful for a disorder that causes my baby to struggle with the simplest tasks? Why would I choose this above all other things in my life?  Autism is not something I ever prayed for Jake to have. Autism is not something I would say is the best thing that ever happened in my life. But autism has opened my eyes to others. It has opened my mind and especially my heart to see things beyond what the eye can see. Autism has changed me for the better.

As I sit here and think about what it is like having an autistic child one of the first words that pops into my head is “hard”. It is so very hard. It is difficult for me to describe what each day is like for me, my family and especially Jake. But the word that follows ‘hard’ is JOY. This boy brings me (us) so much joy. The daily challenges he overcomes and the way he tries his best to be the best fills my heart with so much joy and love it is nearly indescribable.

We have been on this journey for quite some time. There have been days where I didn’t think we could reach a goal much less reach Jake. There have been a lot of tears and a lot of heartache. I am sure there will be many more tears shed as well as many more moments that I feel my heart can’t take the pain I feel.

But I find that I am focusing more on the victories than the struggle. I look for those victorious moments more and more each day. They are there if I pay close attention and focus on them.

Last night Jake was playing with his little people and cars. One of his dump trucks had broken. In the past (and by the past I mean last month) he would have screamed and cried and told me to fix it for him. For Jake it was devastating that his toy “broke” and he couldn’t see past that particular moment. During those moments the world he knew changed, he reacted as if it was a catastrophic event. When I saw his truck had broken (for the millionth time) I held my breath, bracing for the scream and said “bring it to mommy, I’ll fix it”. Jake looked at his dump truck and said “I’ve got it. Jake can fix it.” As I watched him replace the part that had fallen off; joy filled my heart. He sat there and worked on his truck until it was fixed. Jake looked at me and said “ta-da” and went about playing.

When it was time for bed John told Jake to clean up his toys. Jake loves to drag out every toy and watch them fall out of whatever container they are stored in; he loves the sound and watching the toys go every which way. All of Jake’s little people had been dumped on the lid of the container. I again held my breath, ready for a meltdown. Jake did fuss a little but John quickly said “I told you if you dumped them out, you would clean them up.” Jake looked at the people on the lid and carefully picked up the lid and dumped all of his people into the container where they belong. He runs over to me and says triumphantly “I did it!” He sure did! He could have cried as he picked up the people one-by-one but instead he looked at the situation and saw the best way to clean up. I know this doesn’t sound like a momentous occasion but honestly it was!

Again the pride and joy flooded my heart. It was in that moment that I realized if it hadn’t been for autism I might have missed this milestone.

I used to celebrate the big victories, you know the ones that most of us notice and can see instantly. I still do, but now I find that I celebrate the tiniest of achievements. I can see them more now as my eyes are open wide to witness and experience every ‘ta-da’ moments because those little victories are the big ones!

I am thankful for John. I am thankful that he listens and encourages Jake, he holds Jake accountable for his actions, and he is there for me when I need backup (which is often). I am thankful for Allie. I know being a big sister to a special needs brother is more than difficult at times. There is an 11 year age difference. They fight like siblings do and it gets on my last nerve. But I see her teaching him, loving him and encouraging him each and every day. The love that she shows to her brother is breathtaking. I am thankful for Jake’s oldest brothers and their significant others. They treat Jake the same way they would treat any other child that is 5 years old. It’s a little different because they have never lived with Jake as they are 19 and 20 years older than him. What I love about each of them is that they respect Jake, they love him and even though they might not know this; they teach him each time they are around. I am thankful for Jake. He brings so much joy and happiness to each one of us. His happy disposition is infectious. And of course his smile; it’s always there!

I have so much to be thankful for this Thanksgiving. But if autism weren’t a part of my life I would not be the person I am today. I am stronger. I am able to advocate for my child. I have more patience. I am more understanding and I see others in a different light. Autism has taught me a lot about myself. There are things I have learned about myself that I like, while other things not so much.

Having an autistic child is difficult but it has helped shape me into a better person as well as a better mother. For that I will always be thankful!

 

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My family!

 

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Danger

Jake is a tough kid. He plays rough, he is always running and crashing into things. He doesn’t always let us know when he hurts himself as he has a very high threshold for pain.  There are usually at least 6-10 bruises on him at any given time; living with this kid keeps me on edge. Seriously, whenever he runs I hold my breath while telling him to “slow down, look where you’re going.”

Jake falls a lot and most of it is due to him having sensory processing disorder. The typical signals that our brain sends out telling us something is heavy or light don’t get sent in his brain. Which attributes a lot to his falling and running into things. Jake goes at everything full force and because of this he typically injures himself.

One of the many traits associated with autism is toe-walking. Jake has toe-walked from the beginning which adds to balance issues. The boy has some serious calf muscles but if toe walking continues with no correction it can lead to tight heel cords and eventually he won’t be able to stand or walk flat-footed. This past June we had him fitted for AFO’s (ankle/foot orthosis), these help him not to toe walk which allows him to have better balance. Many parents I’ve talked to whose child wears AFO’s hate them! For these parents it is a fight to get them on every day. Jake on the other hand, loves them. They provide him sensory input, they are heavy and give him the stability he needs. For the most part, Jake is able to run without falling down as often, he has better balance and is able to focus on what he is doing while wearing his AFO’s. When Jake isn’t wearing his AFO’s his toe walking has diminished to some degree and seems to have better balance, which are the results we want to see.

The only thing these wonderful braces don’t fix is sensory overload. What I mean by this is Jake will be walking fine but the moment the atmosphere around him becomes too loud or there are too many things to look at and see; he will be more prone to fall. Almost as if he can’t see what is in front of him; one might think he has vision problems. I assure he doesn’t; we have his eyes checked regularly just to make sure. Jake walks into walls, doors, people or anything else in front of him. We constantly have to remind Jake to “watch where you’re going” and frequently remind him to go slow. Our eyes have to be on him at all times when we are out in public. If Jake isn’t in the shopping basket or holding hands with one of us it can be scary. Danger is always around every corner.

Jake likes to run everywhere. He does not like to walk. And this is what keeps my heart racing as he falls time and time again. He has had so many near misses it is a wonder we have only been to the ER once since he was born. We always say that Jake must have a guardian angel protecting him; I cannot begin to tell you how many times he has avoided danger. Anytime he falls I expect to see blood, I prepare myself for the worst…just in case.

Unfortunately, this past Monday, Jake fell and cut his cheek. He was running and tripped and slammed his face on the edge of his train table. We were lucky that we have the best pediatrician and that they were still open. I was so happy when Dr. H. told us to bring Jake to his office instead of the ER. We were able to get Jake in and have a cut on his face “super glued” so we could avoid stitches.  It was really scary; there was a lot of high-pitched screams and of course a lot of blood. Jake wanted to hide his boo-boo and not let us look at it. Trying to explain to him what we needed to do was incredibly hard. Choosing our words so that he might understand and not make it more scary for our boy was difficult. But at the end of the day, Jake did amazing. We got him “glued” up and by the time we got home Jake had forgotten about his cut and was enjoying his McDonald’s dinner, which is a rarity.

I’ve been told I’m too uptight when it comes to Jake or that I need to relax and take it easy. But what others don’t see is the danger I see surrounding Jake at any given time. I try not hover as I want Jake to experience different things. But it is hard when he constantly falls or runs into things; the danger is only inches away.

Do I need to relax? Sure thing. Do I hover? You bet I do. But what can I say other than it is hard to not hover or to relax when your boy is rough, when your boy crashes into everything and he falls all of the time. I would like to relax. Those moments (and yes they are just quick moments) where Jake is playing calmly with his trains and I am able to sit on the couch and watch him without being afraid; these are my most sought after moments! But as soon as I think to myself ‘this is so nice’; Jake is up and running and falling down and crying. I kiss more boo-boo’s than I can count. But hey, I’ll take those brief moments and enjoy them to their fullest!

My wish is that one day Jake will be able to focus on the activity at hand and close out the sensory noises and activities around him. That he will be able to run and play without falling and I won’t have to hold my breath every time he takes off.

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the ride of your life

Imagine you are on your favorite roller coaster. As you begin the ride you can hear the clink of the car on the track. Your adrenaline builds as you anticipate the climb and then the drop. As you reach the top of the first hill, you lift your hands and scream as you descend. It is scary yet invigorating. There are moments on the ride that scare you to death and then there are those moments that make you smile and scream with excitement. When the ride ends you tend to remember the exhilaration you felt and the scary parts go to the back of your mind as you get in line to ride one more time.

This is our life with Jake.

One moment I am scared, I don’t know how to help my boy. Then the very next second he does something so incredible I want to throw my hands up and scream with excitement. It’s those exhilarating moments, the ones that take my breath away, that keep me going back for more. I don’t focus on the scary part of the ride but more so the exciting thrill and the butterflies in your belly feeling. The scary parts lead to the exciting parts and that is what makes it all worthwhile!

Autism makes our lives a little different. Autism does require us to look at life a little differently. But having an autistic child or being autistic should never be used as an excuse. We do have a different way of life and have to have a different mindset but that is not the definition of autism. It is a neurological disorder. There is no scientific cure, there is no real explanation as to why one child is autistic and another isn’t. There are many different viewpoints on this subject and while I don’t want to start a debate as to who is right or who is wrong, I do know that for my son, there is no specific reason as to why he has this diagnosis.

It seems that there have been a lot of celebrities coming out saying they think they are on the spectrum or that they are on the spectrum. In most cases, I think this is a good thing. It is bringing awareness to autism and allows people to see that while autism can be extremely hard it can also be beautiful.

John, Allie and I work our butts off with Jake. Teaching him right from wrong, working on fine motor skills, social skills….the list is endless. We try not to say he is behaving a certain way because he’s autistic, we don’t EVER want that to be an excuse. Autism does hinder Jake’s processing of information. Autism does explain why he acts a certain way. Jake’s behaviors (at times) are autism and sensory related. I don’t know why he does what he does or why he melts down for what I think is no reason at all. BUT we try feverishly not to blame all of Jake’s actions specifically on autism. Many times it is a very fine, almost invisible, line. But Jake has to learn that no means no, and he can’t melt down or tantrum to get his way. Autism cannot be used as an excuse. Jake does have autism, Jake does have sensory processing disorder. And yes they make his life extremely hard at times but we work on the challenges, we give him the tools he needs so that he won’t need to use his autism as an excuse.

I’ve said it before and I am sure I will say this a million more times; Autism does not define Jake. Jake will learn to define himself for who he is despite having autism.

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The boys and two of their cousins; 1996

worth waiting for…

In the past when I have helped out at Jake’s school it is always pretty much the same. Jake sees me, he cries, runs away and hides. He wouldn’t participate in the activity, he wouldn’t come over to me, he wouldn’t acknowledge me and he sat alone in a corner.

I have grown to expect these behaviors from Jake. I tried to not let it bother me too much. But the truth of the matter is; it bothered me a lot! I mean who wants to see their child at school do this? I would go in with the expectation that Jake would behave the way I described but inwardly hoping and praying he would run to me with open arms and act somewhat appropriately while I was there. Many times I would leave the school feeling defeated. I have shed many a tear. Always wondering and questioning how I could make this better for him.

Nearly four years later this would all change.

This past Wednesday Jake’s resource class had an on-site field trip. A local church brought a pumpkin patch to the school. I went with no expectations from my boy. As I approached his classroom the nervousness built and I prayed he wouldn’t cry, run or hide. As I entered his classroom Jake was sitting with the other children, waiting to line up for the activity. Jake saw me and smiled. Another friend said “Jake, your mommy is here!” Jake smiled even bigger. He didn’t hide his face, he didn’t cry or run away. He sat until his name was called and when it was time for him to line up he came over to me and gave me the biggest hug! My heart melted and I am sure there were tears in my eyes. As Jake walked down the hall with his class he would periodically turn around to make sure I was there. He would smile at me and continue walking. Jake participated in the games, he picked a pumpkin, sang songs and listened during story time. Jake was full of smiles and laughter and gave me a lot of hugs.

I thought my heart might explode with pride!

Later in the week, Jake had a party in his kindergarten classroom. I was excited to see how he interacts with his typical peers and not sure what to expect. I put my emotions away and told myself, ‘it will be what it will be.’ Jake saw me, smiled and gave me a huge hug. He followed his teacher’s directions. Jake played games, he laughed and seemed to have a great time. He would look at me from time to time and smile. When the party was over and time for the kids to go outside, Jake made sure to tell me “I need to play outside now. See you in a few minutes.” Jake smiled again, said goodbye and was off and running.

I couldn’t have asked for a better week!

People have said to me “why are you surprised?” or “you should think positively about Jake, he is doing great!” But those people haven’t seen all that I’ve seen from Jake. I don’t walk around thinking my kid is the worst. I don’t walk around being negative and only looking for the “bad”. Honestly it is further from the truth. I just don’t have any expectations when I go to the school to see Jake. This protects my heart a little. If I go in expecting him to do the things I’ve heard he can do and he does the opposite, it makes me sad. I’ve gone to school excited about what Jake will show me, I have gone to his class expecting my boy to run to me with open arms. It tears at my heart when the total opposite happens.

When I go to Jake’s school, I am nervous. I tell myself ‘it will all be okay no matter what happens. If Jake cries, we will work through it.’ I go in with little expectations. So yes, I was surprised. The first time in nearly 4 years my boy didn’t cry when he saw me. I was ecstatic that he gave me a hug and that he participated in all of the activities. My heart was full of promise.

Jake is an individual who can’t be compared to others, autistic or not. He will do things when he is ready. Patience is not my best friend. I don’t like to wait. One thing Jake has taught me is that if I am patient and I wait long enough he will amaze me. He will do things that I thought might be next to impossible.

Jake has his own time clock; when he is ready he will shine like nothing you or I’ve ever seen! And it is truly worth the wait!

 

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 Colossians 1:11 “being strengthened with all power according to his glorious might so that you may have great endurance and patience.”