Austin, Sensory Processing, and Gluten

I have been thinking about this post for some time and wasn't exactly sure how I would go about writing it.  It is real, it is personal, and it is tough stuff, but I feel like we should share our story.  I guess I should start at the beginning.

Austin is our 3rd son and we had lots of love to give him when he was born!  We were so thankful for him and Cameron and Nolan, his big brothers, were excited to have another person join our family.  The first few months seemed like a blur with nursing constantly and caring for 2 other little boys.  Austin was a sweetheart and had the most adorable little smile and loved watching his brothers play.  He was a light sleeper, didn't like baths for a few months, and loved his vibrating seat and swing.  He seemed pretty go with the flow for the first year over all, though.  It seemed like we had a harder time with Nolan screaming and fighting sleep, crying constantly in his car seat, and throwing fits when I would try and nurse him for months.  Austin nursed for over a year and did awesome.  He did have some sound sensitivities but lots of babies do.  Jake and I would always joke when we went places "Do we have the baby?"  He was awesome!

Flash forward, we decided to have Austin screened through Early Intervention because he wasn't walking at 19 months and his foot angled out.  He also seemed short tempered and would get upset if people would get in his space, loud noises scared him, and he didn't like people singing :)  He had his eval, qualified for Physical Therapy and we started in home therapy shortly after.  He didn't qualify for speech or any other therapy at that time after having a Global Assessment.  After a little while he began walking but his foot pointed out and his ankles were over pronated, which we were concerned about.  After 6 months he was released from physical therapy even though he still had problems with his feet, ankles, and body tone. It didn't feel right at the time but we didn't know what else to do.

By this point Austin was having more fits and hitting his head on the floor quite frequently.  He seemed overwhelmed with life on so many levels.  I literally followed him around the house sitting behind him to catch him when he would throw himself back and hit his head.  Loud noises made him do it, his brothers fighting made him do it, communication frustration made him do it.  It was completely overwhelming for our entire family on so many levels.  It was exhausting and I cannot tell you the number of times I dropped to my knees in prayer for our baby.  For God to protect his head and for us to know how to help him.  Going anywhere was tough.  Home life was tough. If you are reading this and you are experiencing this on some level please know that you are not alone and I pray that you have the people in life that you need to encourage you and ask how you are and how your child is instead of "what is wrong with him?" 

I have my teaching degree and spent a few years as an aide with Special Ed and also as a one-on-one aide to a little boy in Early Childhood.  I had no idea that the friends I made during those years and the information I learned during that time was going to equip me for daily life with our son.  Even though Austin had been released from therapy we put in a request for more evals.  We knew we needed extra help and he wasn't going to "grow out of it."  We all have our own sensory quirks.  I couldn't eat bananas for years because of the texture and would gag at every single poopy diaper until I had my own kids.  With some kids, their sensory problems affect their daily life and it is so much better to get them help as soon as you can.  We had an OT eval and learned that Austin had some sensory processing problems (which we already knew).  He was tactile defensive, sensory seeking, and had problems with his proprioceptive and vestibular processing.  I know that sounds like a lot of big words but it made sense. He gagged at the sight of the playdoh jar, he was constantly seeking input to jump and bounce into us, his balance and coordination were off.  His brain takes in a lot through his senses and they get jumbled up when they should be getting organized.  Great!  We had it figured out.  Then we were told we were on a waiting list and the meltdowns and headbanging were stronger than ever. Tantrums were intense and we had to keep him safe but touching him set him off even more.   Thankfully God was on top of this and used somebody from our small group to connect us with her sister who was an Occupational Therapist.  Long story short, she started seeing Austin in our home even though she worked in a clinic and we didn't have to wait months on a list.  She also recommended another Physical Therapist eval.  So we put in for that again, with a different therapist.  He had that eval and another answer to prayers.  He qualified and she also knew so much about sensory.  We learned a ton about Austin and how his brain was working and worked to get a sensory diet in place for him and we saw some awesome things.  by 2 1/2 he was still having a hard time with his language.  So, we put in for a speech eval.  We learned what it means to advocate for your child. He qualified and we got a wonderful speech therapist. 

Throughout all of this time Austin was making huge gains but he was still hitting his head on the floor, the wall, his bed, his swing, his car seat,  the basement floor.  He also started biting his wrist in frustration.  I'm sure that everybody had their own opinion on how to handle those situations, but when it is your child and he isn't going to stop hurting himself, you can't just ignore that behavior.  When your baby is hitting his head and could injure his brain there are lots of prayers, tears, prayers, and more tears.  Jake was gone for 3 weeks this summer and Austin was up to 3 sessions of therapy a week.  He picked up aquatic therapy and responded very well with that.  There were days and weeks that didn't seem like they were gonna be okay.  I will never forget the second week that Jake was gone and somebody from church asked to keep Austin for a few hours.  The big boys were with their grandparents for 2 nights and Austin and I were home for therapy.  Life was tough for Austin which made it tough for the people taking care of him so babysitters didn't happen too often.  I can also assure you that people didn't ask to keep him.  That night got me through so much and Austin had a blast with our friend from church.    I know there are people reading this and you completely understand.  I am writing this for you.  To share our story so that you know in this moment that you are not alone.  I get how you love your kid more than anything else in the world and you are gonna do everything you possibly can to fight and help your kid.  I think the world of you!

During some of those therapy sessions I had conversations about taking gluten out of Austin's diet.  There are some kids that have food sensitivities that can affect how they grow and learn as well as how they behave.  For months we talked about putting Austin on a gluten free diet.  It seemed overwhelming as a family of 5 and also with the expense. 

Jake and I took our 10 year anniversary trip in November.  We planned and saved and purposely went at that time after Austin had started Early Childhood and he had a smooth transition into school.  He was doing well and we were so proud.  His teacher and team were amazing and we couldn't have been happier with his plan for school.  But, he was still hitting his head and throwing fits.  Jake and I were gone for a week.  We needed that week so badly and had an awesome time.  The 3 boys stayed home with their awesome grandparents and they did all the running around, meals, bedtimes, and nap times.  They were awesome and we were so thankful.  Austin had a really hard week.  He had an increase in behavior and was very overwhelmed by the end of the week and even at school.  When we got home there was a lot of tantrums, headbanging at the drop of a hat, and a lot of anxiety.  We were so completely overwhelmed for him and his safety that we put a bike helmet on him just in hopes of keeping him a little safer.  He even wore it to church one Sunday.  It's tough and I know that some of you have come across this blog from googling sensory processing, headbanging, or gluten at 11 o clock at night in tears because you aren't quite sure what to do. 

Thanksgiving Day we stayed home.  We didn't go to our family meal because it was gonna be too much for all of us at this point.  It was a hard decision but we know it is what we needed to do.  After many texts with some old therapists and our new OT we decided to take Austin off of gluten.  If there was a chance that he might feel better we were gonna try it no matter how hard or expensive or overwhelming it was.  Life was already tough.  We were up for it :)

This is what we have seen so far after 1 week at home:

After 1 1/2 years to 2 years of banging his head and having minimal control over his emotions, Austin has stopped hitting his head by about 90 percent of the time.  We kept waiting for it and he did it a few times when he was tired or overwhelmed but there was a dramatic difference in our lives that first week.  All the research we read and our therapist said it could take a couple months to even know if he was being affected by gluten.  He started to talk more. We spent more time as a family and played games like Simon Says and Follow the Leader.

After 2 weeks of being off gluten:

He has quit banging his head by about 95 percent.  He is saying sentences like "Daddy, play with me." He also said, "Daddy, I saw blue lights" as we drove around looking at lights the other night.  He smiles and laughs so much more.  He plays with his brothers more.  Does he still get frustrated?  Sure he does, but we are able to say his name and redirect him in a way that we have never been able to before.  We are able to tell him to get his puppy and console him and hold him when that would have made him bang and get madder before.  We can give him kisses for his boo boos and he says "that's better."  When he starts to get upset we are able to ask him if he can please calm down.  He says "yes" and most of the time he is able to bring himself back down.  Something that has been very difficult for him. 


I don't know what the next few weeks or months are going to look like for our family.  I know that some people will think we are crazy as we read labels and bring our own food for Austin and he won't always understand it all.  But we are totally okay with that.  Yes, Austin has a lot of other sensory things and speech that we will be working on but my goodness, the fact that he is so much safer now will give us more of the chance to do those things.  He may regress at times, and in uncomfortable places, he will probably have a hard time, but we are going to help him through it.  So, if you are reading this post and are thinking about a diet change for your child. I say go for it and give it a try!  What do you have to lose?  I know it isn't the case for all children but it is certainly worth a try.  We will keep you posted on Austin and if we see any more changes after some more time.