Autism, Dup7, and more

Sean’s Early signs…

( I would like to start this out by saying these are strictly behaviors we noticed in our son. In the research I have done a lot of his behaviors seem to be the same in others diagnosed with Autism. BUT every autistic child/person is in fact different. They may show all the classic signs of Autism where others will only show a few of them.)

Autism… What is the first thing you think of when your hear this word? For me personally, it was confusion. I knew nothing about it because I had never experienced it one on one. I distinctly remember hearing it in my work office one day and asking ” But what exactly is autism?” You see for many autistic people it is a disability that you can not see. I often hear (as do many other autistic parents)  “He/She looks  so normal. Are you sure?? Many kids, his age, act that way or do what you are describing”.. If I can, I would like to take this moment to share with you some of the things Brent and I noticed in Sean from the time he was born to the moment we first heard he might be Autistic.

One of the first things we noticed was actually within Sean’s first few days of life (believe it or not). As soon as he entered the world he was nearly silent. Brent later told me he thought then something was not right. That first night in the hospital we waited and waited for Sean to wake us up ready for his first bottle of milk. But he never made a sound. When he did finally take his bottle he seemed to have a hard time drinking it only taking about an ounce at a time, if that much. (Swallowing proved to be an issue later down the road also). We asked the nurse about this and she explained to us it was normal and he would soon get the hang of it.

While in he hospital Sean seemed to already be constipated! How could that be?! The pediatrician said it was Sean just getting used to the feeling of using the bathroom and the grunting and straining should soon pass. I was not convinced but she’s is the doctor right?? However as he grew older constipation became a more regular part of life. It did not matter if I changed formulas, gave him prune juice, or any of the other “old wives tales” to help relieve babies of constipation. He just always had trouble.

Aside from being  abnormally quiet and the constipation, noting initially seemed to be out of the ordinary. A few things were very different from his sister one that stands out the most is Sean LOVED to be swaddled! As most babies do, but Sean did not want to just be little snug. He liked to be swaddles tight like a burrito.  We lovingly still call him burrito baby. HAHA. His sister HATED to be swaddled. She would wiggle her way out as soon as she could!

Sean also continued to be very quiet. He did cry when he was hungry and wet. But his cries never turned into words like they should have. He started to say dada but then by the time he was a year hold it just vanished. Like he forgot how to do it. To this day at 2 and half he barely says dada. He might ever once in a blue moon.

As I said before swallowing has always been a problem for Sean. The older he got he still continued to gag and choke on his milk or juice. However he even began to choke on his own spit! Something we laughed about, but deep down I knew that was not normal for the frequency which it happened. The choking was such a problem that I could not give Sean real solid foods until he was good year old. I gave him many baby foods that were all smooth puree for a long even after he turned a year old. It seemed like every time I tried to give him foods that had bigger chunks in them he would try to swallow the pieces whole instead of chew them up. He does much better now but this same behavior non chewing behavior has changed into the inability to take bites out of food. He can eat and chew foods that are already cut up into bite size pieces but he can not and will not, for example, take a bite of a banana, or sandwich, or chicken nugget. He instead tries to put the whole thing piece of food into his mouth.

Sean also did not sleep well at night. Again lots of people would say “All babies wake up through out the night”.  Well he woke up often! Not just as an infant, but as a toddler as well. He would not wake up because he was hungry, or wet, or wanting to play every time either. He would just wake up.  Almost like he was having bad dreams. The only way we could get Sean to sleep for any length of time, as a small baby, was by swaddling him super tight and place him in his “rock and play” with the vibration on. So in a sense it put him into a cocoon. Imagine the horror the day I discovered he was out growing his rock and play and we had to move him to his crib! Moving into his big crib seemed to be a nightmare. It was like he never slept. It was near impossible to recreate the tight cocoon he craved. What ultimately helped the most was a weighted blanket when was almost 2 years old. Again to this day sleep still tends to be an issue. At least now we have more good nights then bad.

I think another behavior worth noting is Sean’s fascination with textures. He loves to touch everything! It started out first with my hair. He always wanted to run his fingers through it wet or dry. Then it moved into touching the different textures on the floor. He will notice the way different carpets feel, or the way the brick on our fireplace feels different from the hard wood floor its next to. When Sean is outside he is letting dirt run through his fingers or he is picking blades of grass and rubbing them in his fingers. He loves the beach because he can play in both wet and dry sand. He even enjoys sitting in a pile of rocks to sort through them.
(one of the few times he slept on the floor for a nap!)

As Sean grew, a lot of the milestones he should have been reaching never came to pass, or he reached them much later on the developmental timeframe. He started to roll like he was going to roll over, but then it was like he forgot how to do it. He would just lay there on the floor. I would place him on his tummy thinking he needed to start there. Similar to rolling over, he tried crawling, but seemed to forget how to do it over night. Walking and standing again started the same way. He did in fact reach these milestones but what appeared in a delayed fashion. He has never shown much attention to toys. He liked(s) toy cars, but he never imaginatively played(s) with them. He just holds or chews on them. Like stated previously, talking still eludes him. He tries more now then before but nothing really clear.

Then it happened, his repetitive behaviors and stemming began. I am not 100 percent sure when it happened but I know I have a video of him about 9 months old kicking, hand flapping and yelling all together. We did not know that he was stemming at the time we just thought he discovered his voice and was very excited. But, this whole motion never stopped. He will still do this (especially after he turned one) all day long. That’s when I new to my core something was “wrong”, nothing would/can make him stop.

Another repetitive behavior he does is with his toys. If he is not holding and chewing on a toy he is picking toys up and throwing them into piles behind him. He will then promptly turn around and do this whole motion again. He could do this for long periods of time no matter how hard we try to get him to do something else. Luckily, since he is now receiving occupational therapy, he does not throw toys quiet as often. He has become more engaged with his books and toys.

By the time Sean was about a year and a half he started to loose eye contact (which thinking back on it now, it seemed to always be a problem) and he started to withdraw more. I remember my dad telling me “Katie, I will call and call his and name and he will NOT look at me.” He has always been snuggly and loveable but he would leave the room to be by himself for long periods of time. For the most part we would let him do this because he seemed so much more happy and content in his “quiet” time. All of these behaviors looked at separately would not seem as a big deal but when you start to add them all up it shows a real problem.
The day Sean’s pediatrician finally said something seemed wrong was at Sean’s year and half check up. In August 2017, is when she said that there was a possibility that he is autistic and my world forever changed. I remember my brain completely turning off. She left the room and came back with some phone numbers for me to call, so I could get him the therapy he desperately needed. ( I will get more into the diagnosis phase in a later post).

There are so many signs for parents to look for if you are concerned your child has autism. These are just some of the ones we have had to work with in our day to day life. Always go with your gut and talk to your Childs doctor. I always knew something was different but I could not put my finger on it. I hope this helps you identify something in your child. Just remember, if this is the journey you are starting down, your child is the same child you have always had. No different then before, the only difference is that you can understand him or her better and help them to have a better brighter future in this world!

Love Always,
Katlyn – A Gulf Coast Mommy

( this photo was taken the day I was told Sean might have autism.. It was a tough night to say the least)

One Comment

  • Cheryl curley

    Love this. So many doctors just don’t really listen but thank God she did and you guys are getting what you need.

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