Anyone with experience with Sensory Integration Issues? Dev Delays, Autism?

[momofjandl]

I have an almost 4 yr old son who has some sensory issues that now seem to be affecting his first year of preschool.

He does not want to sit for story, does not like to do the activity, and is not making a strong social connection with any of the other kids. He often does his own thing which is usually puzzles which he is very advanced with. He can do a 40-60 piece jigsaw by himself.

I parent help at times and have heard him tell children they are talking or singing too loud. (Which might explain not sitting for story or project.)

He also has a strong gag reflex (recent) and a very strong sense of smell. He could smell chocolate on my breath from 3 feet away!! He smells anything he touches and will even smell his hand after touching something. He is also a picky eater. He doesn't like to pull his sleeves up and doesn't like the tag on the shirt.

He had a speech delay which he was in EI for and tested out before he was 3. For the longest time he would put things in his mouth and just recently stopped that in the last 6 months. It seems that these other issues have replaced the oral issue.

We are in the process of getting him evaluated through our town. I am worried because I've noticed change in his likes. For instance he does not want to play at a playground. He'd rather walk somewhere and explore. Just last summer he loved the playground. He doesn't seem to really know how to or like pretend play. He seems bored a lot of the time. And spends his time doing puzzles, worksheets like connect the dots and mazes. And he loves his leapster. He used to love to draw and doesn't do that so much. But does like to do large scale art projects. Like let's make a robot kind of things.

He has a younger brother who is 2.5 (17 months younger) and they do play together. He is also able to play with other children..but more one on one and for short periods of time.

Soo..sorry this is so long. Anyone have a similar child? Any ideas of what to do to help with the sensory issues? My greatest fear is that he is becoming autistic or displaying some autistic tendencies. I know it's perhaps irrational..but I don't want to drop the ball on this one.

He is otherwise a very happy, loving, caring, and sweet child.

Thanks for any thoughts!
Ruth

[brittone2]

I only have a min...gotta start dinner ;)

I worked in early intervention as a pediatric PT before my DS was born, and did quite a bit of work in a special needs preschool in their autism classroom. It sounds like your DS does exhibit some things that could be consistent with SI issues. Having him evaluated is a great step. Occupational therapists generally are the ones that will work the most with sensory issues. They may be able to work with the preschool to set your son up for more success. For example, they can establish a "sensory diet" that would give your son the chance to explore some various sensory experiences throughout the day. That may help with some of the behavior. Sometimes a special chair (even just a bumpy textured cushion or a therapy ball) can help a child with SI issues sit better/longer. Depending on your son's needs something like the Wilbarger protocol ("brushing") might be used...depends on the OT's recommendations. It is something to look into.

If he gets an eval, you might want to consider asking the evaluating therapist(s) whether they think an eval w/ a developmental pediatrician or neuropsychologist is warranted. Those two specialists are skilled at diagnosing autism, if in his case it *is* more than SI issues in isolation.

[pinkmomagain]

Ruth,

My daughter was evaluated at 3.5 yo and had/has various delays. It's great that you are getting him evaluated! Hopefully, he will get whatever services will help him. From your description it sounds like he may get OT and maybe a social group?

Anyways, please, please get the book The Out of Sync Child. It is one of my favorite books about sensory issues...I had many "ah ha!" moments reading it for the first time.

It sounds like you are really on top of things so he's lucky to have such a great mom. I know with my daughter they were reluctant to give a diagnosis right away since the way kids present can change so much as each year passes. She really looked like an autistic spectrum kid at 3.5 yo, and now at 7 yo she is diagnosed with OCD, ADD (inattentive type) and at risk for a learning disorder. That all might sound scary, but she is in a mainstream classroom with no interventions (she had almost every service available at 3.5 yo)...although I think she needs resource room services because she is having a hard time getting her work completed at school due to daydreaming.

Good Luck! HTH a little,

Gina

[brittone2]

seconding Gina's recommendation for the Out of Sync Child (and I've heard the newer book The Out of Sync Child has Fun is great too). I was just coming here to edit my post to include this, but Gina beat me to it. Great book and many parents and professionals find it very enlightening.

OTs have a lot of wonderful activities they can do based on a child's individual sensory needs/issues. Activities like swinging can help promote sensory organization, they can work on body awareness through crawling through tunnels, some kids really do well with deep pressure type sensations and they'll do various activities that can enhance that, etc. It all depends on what the child seeks/avoids sensory-wise...they'll curtail treatment accordingly.

Wishing you the best.

[writermama]

I know you'll get good advice and btdt help from moms here, but I wanted to add something.

A friend of mine is an autism education specialist and when another friend's son was diagnosed with SI, she recommended the resources ay the Autism Society of NC's bookstore. They have a Sensory section, here: http://tinyurl.com/yk5xy9

Looks like lots of books on the topic.

There's also a magazine called SI Focus www.SIfocus.com

Lastly, the advice she gave to my friend (though I can't phrase it as eloquently as she did):

If your child is diagnosed with autism (or on the spectrum), try to focus on his abilities and progress and try not to think about the label. It doesn't limit his potential -- of the roughly 300 autistic students she supervises, almost all are mainstreamed in regular classrooms with no special ed ... except for the GIFTED classes.

HTH

[kochh2]

Hang in there.. feeling unsure is the worst feeling of all, whiel you are waiting for answers. ITA with all of the other posts, and currently work as a PT in a very specialized area of practice- a small school in CT for children with neurological disorders, may of whom are on the autistic spectrum, or have autistic like behaviors.
I have also works in EI and public schools with children who sound like your little guy, all of whom had a need for some help from OT's, but not all of whom were labeled as anything in particular... many of them made tremendous progress and seemed to almost outgrow their "issues"... remember that if he is not feelign comfortable in his own body right now due to sensory issues, he will not really want to focus on other things like friends and palygrounds... maybe he doesn't liek the way the cold metal feels on his skin, YKWIM??
I have access to the forefront of research in this field through our director, who has a 22 year old daughter with ASD, and if you ever want to speak with her to ask her more direct questions, I am pretty sure she would be happy to do so....

question- do you have any GI concerns with your son?? if so, make sure to get them taken care of by a specialist ASAP, as this is closely related to this type of diagnosis, and can often make things worse... early intervention is key, and it sounds like you are ont eh right track... feel free to email me with more questions if you want!
good luck, You'll be in my prayers!!

:)

[momofjandl]

Beth,

Thank you for your responses. I did see in my research information on sensory diets. It's kind of funny b/c a lot of the games they suggested for kids with sensory issues are the ones we've come up with on our own that he just seems to love. Ie: simon says, red light green light, etc.

I was hesitant to start any formal sensory diet, touching, massage, spinning, etc. as I read that it depends upon your child's specific needs and some things can harm a child more than help depending upon what issues they have.

I will ask if he needs to see a dev pedi or neuro. I don't feel he is at that point, but I am also the parent and maybe not seeing things clearly. The only way I can explain things is that he as some behaviors of a 2-3 yr old rather than a 3-4 yr old. Like the not wanting to sit, the putting things in the mouth. (Which has mostly stopped.)So we sort of thought maybe he was just behind as he was behind on many of his dev milestones.

We are just starting the eval process now so I guess it won't happen till after the holidays. I'm hoping they can get into his classroom quickly and we can get an idea of what will help him. I think he is starting to be aware that he is different in some way. (He has food allergies too so that doesn't help.)

Anyways..thank you for your response..I also have a friend who is an OT and she gave me some ideas too.

Ruth

[momofjandl]

Gina,

Thank you for the book title. I did see it in doing my research and was meaning to get it. And thank you for the praise. As you know, it's so hard thinking there might be something wrong with your child. As I posted to Beth...we just thought he was perhaps behind..and he may be. But I don't want to drop the ball. We did EI for speech b/c he had a delay but started speaking at 2. So he has a history of being behind.

I'm so glad to hear that your daughter is doing so well. I think being aware of it early really does help. I have to say I can relate to her daydreaming. That's all I ever did in school :). I hope she continues to do well.

Thank again for sharing!
Ruth

[momofjandl]

Thanks Karen for the links and reassurance. It really does help. I think sometimes..at least where I am..there is a stigma attached to EI, Spec Ed, etc.

I am so thankful to have these resources so that I can educate myself and make the best choices for him. We are actually in a transition place and looking to buy our settle down house in the next year or two. Now I know that I need to look into school systems that aren't just for the kids that do well. If that makes sense. I had a hard time in school being able to foucs. (Both my dad and brother have been diagnosed with ADHD. I was never tested.)And my school really catered only to the ivy league type kids. I want to make sure we are in a town/school that has great services in the event we need them.

I'll definitely ck out these sites. Thanks again!
Ruth

[momofjandl]

You really hit the nail on the head. I really thought he was just a little behind his peers but now that his teacher brought it up and he's having some troubles..I feel responsible in some way that I didn't catch it.

He tested out of EI before he was 3 so I sort of thought we were all set.

I feel good about hearing that some of your kids almost sort of outgrew their issues. My son has a history of being behind (speech, walking, etc.) But always caught up. He was just always on the outside end of the realm of normal in development. But he always seems to outgrow his behaviors..like mouthing objects which he did from infancy until he was 3 or so.

As far as GI..I don't think we have any concerns. It used to be just a smell thing..where he would smell everything. He was recently sick with flu and gagging from phlem alot and ever since he's been gagging at the sight of some scents and food. So I was hoping it would go away in time. What should I be looking for in terms of GI concerns?

Thank you for the offer to speak with your director. That is very kind of you and I may take you up on it. I'm going to wait until his eval until I do anything concrete so I know what we are dealing with.

Thanks again!
Ruth

[cchavez]

some days I feel he is ASD but I think that is only when he is having a hard time dealing w/ the sensorsy issues. WE are receiving a variety of interventions and we are making really good progress. Please email me....I would love to chat although we are leaving town today and won't be back for a few days. I have tons of resources to share w/ you......

chavez. slp @ gmail. com (no spaces)

[momofjandl]

I hope you had safe travels. I will def email you after the holiday.

Ruth

[Elilly]

GI issues could be constipation (aka pebble poopies) or diarrhea.

[hardysmom]

Two of my kids have been diagnosed with Sensory Issues... we've been in weekly OT for almost a year and it makes a HUGE difference. My 5 yr old has sensory based motor problems (dyspraxia) which have delayed his fine motor. We also have a lot of problems with food/textures. My 2.5 yr old daughter is both sensory seeking (with a high pain tolerance), has some oral issues (trys to lick everything), and is tactile defensive with some resulting fine motor delays.

A few things-- While I also like The Out of Sync Child, my favorite book is called Sensational Kids. It came out recently and is kind of the new bible of SPD (sensory processing disorder). I think some of the examples are less extreme.

There are several different types of sensory issues- seeking, avoidant, etc... Some kids have both. Also, many issues are contextual. They will have trouble if a little stressed, but not all the time. Our OT says it is like a highway under construction- sometimes there is a traffic jam and things get dicey and other times it runs smoothly. In other words, sometimes you think you are crazy for being worried and sometimes you'd be crazy NOT to worry.

Try to get a referral directly to a Occupational Therapist for an eval. Sensory Integration Disorder (or Sensory Processing Disorder) has yet to be included in the DSM (diagnostic manual) and many physicians are skeptical that it is a true disorder. Literature and research is quickly changing this, but it can be a tough road if you have to convince your doctor that there is a problem without some type of clinical professional to advocate for you and help educate your doctor.

Because many doctors don't know much about SI, the kids are often mis-diagnosed with spectrum disorders. My DS was one of these kids. Sensory kids often have behaviors which mimic spectrum issues, but if the offending sensory issue is removed, they can communicate well and often have great social skills. They are just so distracted/overwhelmed/busy managing their particular quirk that their interactions seem odd. From the kid's point of view, it is SAFER to play by themselves because they can control the setting; therefore, they LEARN not to interact so much with peers.

At 4, kids are becoming socially aware. Because a lot of sensory kids don't perceive the world around them accurately, they often exibit weird behaviors in order to avoid uncomfortable sensory situations or deflect attention from areas of weakness. For example, as someone pointed out, maybe a sensory kid won't play on the playground because the monkey bars feel icky, the stairs to the slide feel unstable, or all the kids running around is too overwhelming. Art is often a difficult part of the day. Circle time is hard. The child can't articulate the problem, they just know they can't do what the other kids are doing so they wander off on their own, throw fits if someone is pressuring them to engage, seem unfocused or disruptive, etc...

The good news is that treatment is easy and REALLY effective. My son's fine motor jumped almost 2 years in 6 months of treatment. His teachers went from thinking he may need to be held back to moving him into an advanced classroom. Plus- most of the "treatment" is stuff like jumping on a trampoline, heavy work, etc... kids think it is fun and the

Hope this helps.

Stephanie

[ca mom to 2]

A little late to this, but I have to second the recommendation for the Sensational Kids book by Dr. Miller. There were actually some solutions in the book that we were able to try right away that helped some.

My daughter has substantial fine and gross motor skill delays, and was just generally difficult to cope with. Our days were filled with tantrums, and more than one person accused us of being overprotective first time parents. However, our guts kept telling us it was more than that, and we've seen numerous professionals.

We were desperate enough for help that we spent last summer at Dr. Miller's Star Center in Denver, CO. My daughter received five weeks of treatment, and it has made an enormous difference. Last June we didn't think she would even be able to start kindergarten this fall. Not only is she in a regular kindergarten, she's thriving. On a social basis, everyone is shocked that she never attended pre-school. Academically, she's learning all kinds of things. She continues to struggle with writing, but considering that in June she could not draw a recognizable picture, much less write her name, we are absolutely thrilled.

Life is far from perfect. A seating change in my daughter's classroom sent us into a two day tailspin. The district nurse pulling her out for testing (against our specific instructions) was also a crisis, but we're much better at recognizing when things are going wrong even if we can't get her to explain what happened at school. She is also getting three hours of private therapy every week.

I also have to agree with Stephanie that the right treatment makes all the difference in the world. Even in calling the staff at the Star Center to brag about my daughter's report card recently, they offered up a couple of suggestions for her writing problems that our local therapists hadn't tried yet. My husband and I have decided that our daughter is like a gigantic puzzle, and we're in charge of finding all the pieces. Finding the right therapist is a huge piece.

Cathy

DD 6 years
DS 2.5 years

[cchavez]

She can share information/resources, etc.

Let me know......

[momofjandl]

Stephanie...and everyone else..thank you again..so much for the response. I'm half way through The Out Of Sync Child. It can be a little overwhelming..but already I can tell what pertains to us and what does not. I'll look to Sensational Kids next.

From my above post..those of you in the know..could probably tell..that Justin is a sensory seeker. Though it's hard b/c as you know..so many things overlap. He seeks sensory imput constantly, however does not like to be touched lightly...prefers squeezing..as he calls it..which is basically massage like.

We are in the process of getting an eval from the local school system and will see where that leaves us. We will get treatment regardless..it's just a matter if we are happy with the town's treatment or have to go private. Luckily I am in MA and OTA Watertown is supposed to be great...but expensive.

It makes sense about what you said about kids not wanting to do things b/c they can't, not b/c they don't want to. Before reading into this I never knew that and was always frustrated that my son would not do this or that. Now I know it's b/c he can't..and oh how bad I feel.

It also annoys me that people outside of our family of 4 seem to think we bend over backwards for him, spoil him, think he's a little aggressive..hyper..what have you..when really he has this problem that he doesn't know about and can't control. It's nice to see there are others here going through or have gone through the same thing. I'm also glad to hear that treatment really works.

How many of you here have found diet to have an impact? My son has several food allergies which I think contribute to his sensory issues...and since he's so food sensitive I wonder if what we are eating in general is having an effect..though we do eat pretty healthy.

Also..do you husbands take part? DH listens etc. but I don't see him researching online or reading any books and it drives me mad that I am the only one in charge of what I feel is my son's life and future. ARgh. Guess that's for the bitching post area. :)

Anyways..please feel free to email me direct or let me in on your stories and anything that's working for you. For now I have to go b/c our other son is crying and apparently DH doesn't know how to deal with a crying 2.5 yr old. LOL

Thanks again!
Ruth

[kochh2]

Hi Ruth,
sorry for taking so long to get back to you... As far as GI issues, not only do you look at bowel patterns, but as you mentioned, food allergies/sensitivities begin in the gut... so, perhaps it is an intestinal issue, hence GI, for example, the absorbancy of different minerals/vitamins may be impaired or heightened which is also a GI issue...
there are many many many types of GI disorders,and i am not in any way shape or form implying that I have any expertise in the area of GI symptoms... but i have attended conferences given by GI docs, and i do know that no matter what, it is something to pay close attention to even if it does not seem like a problem now. We see many behaviors that can be related to GI issues alone, and clear up with simple treatment.
My 2 year old is over tired now, so i best be going... but like i said, feel free to email for more info!! where are you at? ?We're in Conencticut, and in this area there is a very specialized group of physicians between here and mass. that all speak and collaborate, although they are in different states, adn they seem t have a wonderful rep in this area!!

GL:)
Holly

[hardysmom]

Ruth--

First, on the DH... ask DH go to an OT appointment with your son once you start therapy. I scheduled a couple of appointments so that DH could take DS alone w/o me (which as an admitted control freak was hard) so that the therapist was involving DH (as opposed to him just watching me). One of the twins was almost-2 when she started therapy, so I know what you mean. DH was at a total loss when a meltdown occurred.

The OT will know exactly the buttons to push and can tell DH exactly how your child approaches something vs. how a "normal" kid approaches it. My DH was in major denial that something wasn't right until he saw DS (and DD) trying to master VERY basic skills in therapy and having a rough time. I think because most dads don't see the kids as much with their peers and in structured play time, they don't understand the extent that sensory issues (or whatever) can inhibit their lives. No way would my DH read Out of Sync Child or research therapy with me; however, once we were in therapy and DS was improving, he got on the bandwagon.

I wish I could say it gets better, but it may get a little worse first. People EXPECT a 2.5 yr old to throw fits-- When they are 4-5 and hit "real" pre-school things may get more dicey. Sensory kids need therapy to learn to self-regulate and adapt their reactions to be appropriate to the situation or they can run into real problems both with teachers and peers who don't understand why they are flipping out over something routine. That said, they do learn.

Family is rough. Given that doctors are just learning about sensory processing, one can't really expect mothers-in-laws to get it... UGH. I remember hearing that we were too easy and indulgent...that boys develop later than girl so we shouldn't worry, that it was my fault for not letting DS get dirty (yeah, because he would freak out!). Then, with the 2.5 yr old, I would try to explain sensory integration and they would say stuff like "she is ONLY 2 what do you expect!"

Plus, 2.5 is a great time to start working. The brain is so plastic at that age and they don't have self-essteem issues from feeling different in school. My 2 yr old responded much faster than her 4 yr old brother when we were first diagnosed.

I wish I could give any advice about food, but, like a lot of sensory kids, my DS is soooo freaked out by food textures that his diet is horrible. It was the biggest reason that we KNEW that there was something "not normal" despite the family members who (like yours) just thought we were too lenient, etc...

Hardy nursed very well (for 14 mo.) and was a good eater with #1 baby foods. He never transitioned to chunkier solids and I just kept giving him the #1 foods thinking that when he was ready, he would tackle finger foods, etc... Well, at 4, his ONLY vegetable was baby-food peas, his only fruits were apple sauce and bananas (which he later stopped eating), and the only other things he would eat were fish sticks, chicken nuggets, and pb&j sandwiches. If another food was even in the vicinity of his plate or if anything touched his food he would go NUTS. Major, major meltdown. Our dinner time has been completely horrible for a long, long time...

The process of working on food texture issues is long and tedious. At 4.5 Hardy didn't have a single vegetable in his diet and applesauce was the only fruit. Our OT had a 6 mo goal that he would allow 3 veggies on his plate. Now, we think it is a HUGE success that he will have 1 bite of raw (can't be cooked or altered!) broccoli, carrot, and cauliflower (he choose the veggies) at dinner. Sometimes he still gags, but we're getting there. We now have a similar 6 mo goal with fruit. He still will only eat apple sauce, but were starting canned peaches. I am hoping the fruits will be easier. I mean, they are FRUIT! Everyone likes at least a couple of fruits, right? Anyway, dinners are awful, awful, awful... I dread them.

The twin with sensory issues also has food problems, though she will try a lot of foods. Her fine motor skills are delayed enough that she can't use utensils, but she refuses to get her hands dirty in messy food. She'll eat whatever I put on a pizza.

This is getting long and the kids need to go to bed. Take care and keep posting with questions.

Stephanie

[jasabo]

Stephanie,
Thanks for this info. I'm very interested in your system for food introduction. One of my sons refuses to eat veggies and is on the same "diet" that your son is - PB&J, chicken nuggets and my ds is also hooked on mac n cheese - every single night, he insists on mac n cheese and will freak out if I try to give him something else, and it has to be the same noodle shape every time too. I go back and forth about whether it's a sensory issue or just that he's "spoiled" which is what a few people have told me. But combined with various other behaviors mentioned in this thread (odd behaviors when he's feeling intimidated or afraid, meltdowns if his clothes get wet, etc), I'm afraid there's something more to it.

At any rate, I'm very concerned about his diet and would very much like to know how you're introducing veggies. Do you just put them on his plate and ask him to eat them? Is there a reward system if he does eat them? Any feedback you have on the subject would be much appreciated.

I'm planning to talk to his ped about these behaviors as well.

Thank you!

[kochh2]

just a quick thought on mac and cheese... we often suggest to families that say the same thing-- try making it with black bean pasta for protein... i've tried it and it doesn't sound that good, but it is really not that different tasting,and really beneficial for protein....

Gotta run :)

Holly

[ca mom to 2]

I'm willing to play. Willing to trade anything we've tried for ways to deal with the school district without losing my mind. I need to send you an e-mail anyway.

Cathy

DD 6 years old
DS 2.5 years old

[ca mom to 2]

On the stomach issues, we had several periods of unexplained burping, hiccuping, stomachaches, etc. One of these things would happen for weeks every time my daughter ate anything - a couple of bites or a full meal. None of the doctors could ever explain it. It would happen for a few weeks and then quit. It was finally explained to us this summer that it's mosty likely a sequencing/motor processing problem that comes and goes. The same forces that give the kids obvious gross and fine motor skill delays can have influence on their insides - digestion, breathing, etc..

My husband is also reluctant to participate. I'd find a relevant section in a book, and stick it under his nose. He'd literally read just that page or two. I always thought one time it would sound enough like our life that he'd read the whole thing cover to cover, but it never happened. I agree with Stephanie about sending him to an OT appointment. Just make sure that it's one that will let him participate. We've had several who would have much preferred us to stay in the waiting room.

Cathy

DD 6 years
DS 2.5 years

[daisymommy]

Oh gosh, are you a fly on the wall in our house? That is Joshua to a T! I have always wondered what the deal is, have read every book I can get my hands on, but it seems like I become a hypochondriac and diagnose him as having everything--which I know he does not. But I worry I has ADHD, autism spectrum disorers, or Sensory Integration Disorder. All the doctor's think he's "just being a kid" and he will grow out of it. But I disagree...