My sons Struggle with Sensory Issues- still need guidance

As our beautiful baby boy was born he brought us much happiness but he also brought us rough nights. He would cry non stop for hours every night starting at 8 or 9 and would continue until much after midnight. Or he would go to sleep ok and then wake up crying for hours into the early morning. We tried Zantac, we tried colic drops, we tried gas drops, rocking, holding, the swing, a bouncy chair, our bed, his bed, new inclined bed. You name it, we tried it. My husband and I took shifts so we could each get a few hours of sleep a night. Finally, about 4 months old he began to sleep a little more at night but still had several night time wakings. He got RSV and that set all progress back again. We had to rock him and sing to him for hours to get him to sleep and then he would usually wake up crying --up until he was about a year old. At 16 months we finally got him to start sleeping without being rocked everynight for hours. He started sleeping through the night but would still occasionally wake and cry throughout the night.

He is an adorable little boy that everyone loves. He is as cute as can be, smart, loving and fun. BUT, I noticed that my little guy would not sit in a stroller, high chair, car seat, shopping basket, anything that confined him in for more then a few minutes. He would find a way to get out and it made everything very hard to do. I will not take him grocery shopping, only my husband will because he can carry him and push the cart. I noticed when we go out to eat all kids his age will sit in a high chair and eat and my boy has to be running in the booth or trying to run in the restaurant, we just figured he was curious. He could not sit still. We have since stopped going to restaurants. Taking him anywhere in a stroller only lasts for minutes then he is struggling to get out. So, long trips that require a stroller are out of the question. He has to walk or be held, depending on his mood.

He started hitting his head on things- a cabinet, the concrete, the wall, you, etc and biting his arm at about a year. And, biting anyone else that annoyed him. This makes it very hard to have him around other kids without watching over him every second.

I started to really worry about 14 months or so. He had some serious tantrums already and at times could not be consoled. We had no idea what he wanted or why he was so upset and it seemed like he didnt know either. It was hard and sad to see him going through this. I feared autism as he had some of the signs that I read about and my husband just kept telling me that he was a normal kid with a lot of energy as he would never sit down. He started to walk at 12 months and was on the go. It was as if a tornado hit the room he was in. Getting into everything, making messes and getting extremely upset if you didnt let him. He still cries to play on the stove top or to play in water non stop, etc. He does not respond well to limits at all.

At 18 months I called an early intervention place that came to our house and said he has some sensory issues. He was crashing into things, rubbing his head on the floor and couch and had a bit of a tantrum while they were there because he wanted to go play in my car and I said no. They said all other areas he met his expected age or was ahead of it. Fine motor, vocabulary, motor, etc. all seemed fine. We got him some OT once a week but so far it seems like it has not helped very much. He has stopped biting himself as often as he use to and hitting his head as often. Now, he does it, just not as frequent and he has started rubbing/patting his head when he gets upset or frustrated. But, he still has a hard time with transitions (ex. getting into the tub, getting out of the tub, going somewhere, getting into the carseat, us leaving for work, his grandma leaving at the end of the day, etc), with brushing his teeth and cutting his nails, and changing his diaper is a nightmare, getting him to eat (I usually try 3 to 4 different things each meal before he decides he will eat something and sometimes he wont eat anything or just a few bites and then he wants out to play), he still has tantrums that last a long time and we cannot figure out what he wants, he will wake up crying and just freak out for hours, he is moody from grumpy to happy to crying to exploding, he gets easily frustrated if he drops something or cant do a puzzle or something doesnt do exactly what he expects. He does not play independently for more then a few minutes at a time. My day consists of being pulled from room to room so he can do what he wants. This makes it hard to care for my other baby and cook, clean or do daily things. He will sit and read books if he feels like it and sometimes we can play with his toys but only if he wants to. He has started throwing up at night. I dont even know he has done it until I go get him up in the morning and there is throw up in his crib. He still wakes sometimes at night and cries. Sometimes he will not go to sleep at night he will just stay crying in his crib until he goes to sleep or until I pick him up.

This has been a journey. My husband wants to stop OT as he thinks it is not helping or that he does not have sensory issues. It has been 4 months and there has not been much progress. She comes over and does finger painting or plays games, watercolors, etc which is nice and fun for him. I like it but I dont know how much it is helping. I have asked about a sensory diet and she has not had much response about it, I have to inquire about what I read such as the diet, brushing, joint compressions, etc but she does not bring up new ideas other then things to play with him. She does not say how often or what we can do on a regular basis to help him. I really want to help him. I read about how big of a difference OT makes for a lot of kids and I just dont see it. I want to. I am willing to do whatever we have to do to make a difference. I just dont know what to do. It is frustrating and heart breaking when you see him struggle and upset over what he cannot control. He is an amazing little boy that brings us so much happiness but others have a hard time handling him. Kids are afraid of him hitting or biting them and stay away from him. It makes me sad. I dont want to see him grow up with social emotional issues. I dont want to see him struggle to have friends or belonging or have low self esteem. I dont want him to struggle in school because he cant sit still. I want to help him so he can go to preschool and put his amazing mind to work. What can we do? Where do we go? Who can help?

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Nov 28, 2012
by: Dani

I agree with Jane above. Both of you have described my daughter who is now 6. She is non verbal though so it makes it even harder to figure out what she needs and wants all of the time, although she does communicate with signs and pictures. She loves the water! I have always been so afraid around water and so during the summer we leave a life vest on her when we are at the beach. At night now, we take long baths. I have learned that this is the best time to get her to work on spelling. We have those spongy letters. She will sit, focus, and pay attention to me without being all over the place. We also have done swimming lessons and it took 4 weeks to adjust, but she ultimately loved it! We she gets angry or frustrated, or now with anytime we say NO, she bangs her head or will hit herself. Its so upsetting to watch and she just won't stop. Sometimes we hold her hands by her sides or shield her from hitting her head, and try to redirect. I have not been able to try a sensory diet because she is so picky about what she will eat. She was an awesome eater at age 2 but it all changed around age 3. We did early intervention services with CDSA. Then we became integrated into the school system. She started Pre-K in an elementary school. At 3, she seemed too young, so we waited another year, while she getting services (OT, PT, speech). I think all of the therapies are beneficial, and even though they don't seem to be helpful at the time, become part of the childrens learning process. Maybe you need a different OT. We have encountered many therapists along the way, some of which are much better than others!! My dtg also loves books but has always clung to me, making it hard to get anything done. We moved earlier this year and gave her her own playroom which has made a huge difference. We made it fun and inviting and now she loves playing by herself, or even with some friends. Recently she has become clingy again, but I think it;s just a stage since she we played together so much with her new toys. It's all so frustrating as a parent and very difficult to still have patience, but we have to keep going. Unfortunately, I don't think doctors have the answer and you can only talk to others that have been through it themselves! We have not tried the medicine route yet, but have contemplated it, to help with focusing and sitting still. Some say it does make a big difference!!???

Nov 28, 2012
son struggling
by: jane

Wow, my son is now almost 7 y/o. and i went through so much of what you describe. I have spent most of my free time for the past 6 years researching and reading about anything that seems to connect to my son's behavior. At 6 y/o old my son had various testing, He did not test out for any diagnosis - no ADD, ADHD, Mood Disorder nothing - he tested as a very IQ.

he was dx with possible spd - sensory seeking.

I would so like to be able to offer you something that could make your journey easier - I know how difficult it is, but I am still searching myself -

I will pass on a few things, i am working on my son's diet...i have read so much that indicates a connection between food intolerance and behavior in children - there are a million references out there - it is tough to get a handle on it all - but gluten/casien free and the feingold diet seem to be big ones.

we had the biting issue and i worried about preschool - it was an issue there too - but he had great teachers and together we made it a major focus - he responded well to incentives...'no biting today = 'some treat' and i kept talking to him gently about it and how it is hard to feel frustrated or anger but he needed to ask the teacher for help when he felt those feelings. It worked after a few months - no more biting. (i felt so relieved that he was able to conquer that impulse!)

indoor trampoline - if your son is sensory seeking it makes a difference.

my son was also into water - so early swimming lessons and swimming together was great for us-
i actually used our bath tub therapeutically - he wandered so much and would have such a hard time settling into anything - i found that in the tub with a few toys he seemed to be able to focus on playing better - it was also the only place I ever saw him do imaginary play?

hope this helps a little -my son is doing well in school - he seems to be doing well socially - honestly, when he was really little i worried he wouldn't be able to handle school and the structure at all but he has - I have a younger son as well (2 yrs younger) he has none of these issues sometimes i marvel at the different amount of energy it takes to raise the two different kids. My older son needs so much more parenting intervention - it is constant, ongoing and repetitive - but it does seem to be helping - if ever you want to contact me directly please feel free - i am aware of how exhausting and worrisome this can be!

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