I am going to be making an unexpected trip to the States and I’m wondering if I should pursue an OT evaluation for DS2y4m. It is something we have to pay for privately, so I’m trying to weigh the benefits vs the cost. I’m wondering if the OT is really going to see enough of his true behaviors in an hour to give us an accurate picture of what’s going on and what will help. DS is very verbal and active with me and DH, but extremely shy, clingy, and upset when he’s around strangers. My ultimate goal is to learn more about the input he needs so that I can provide activities at home to help with his sensory seeking, food avoidance, self-regulation, and meltdown problems. I’ve been suspecting sensory processing disorder for awhile, but at times I wonder as well if it might just be giftedness, intensity, and OEs.

Please share your experience with me… what did your diagnosis process look like, was it more than just SPD and/or giftedness, what clued you in, how old was your DC, and what should I look for in the therapist who does the evaluation?

Somerdai, in our family's experience an OT is the wrong place to start for something like this; I'd get an appointment with a neuropsychologist.

We saw an OT when DS was 3 (symptoms like your DS's) and were told he was just fine; she was simply not qualified to see that he had an autism spectrum disorder. Between this and our school district's refusal to evaluate him, we lost a few years of early intervention.

Since you're not local, it seems all the more important to see the right professional first and not waste time...

DeeDee

I agree with DeeDee. I would start with a Neuropshycholgist. So many SPD symptoms can be symptoms of other issues. An OT is not qualified to tease that out and make a determination. A Neuropsychologist would offer more "bang for your buck".

Hello Somerdai.

I'm looking forward to any suggestions and advice that you receive. I was about to post about my DD2.5 year old who has sensory issues. She has extreme food avoidance, and will only eat pureed baby food or crunchy foods by hand. She will not touch anything that has a squishy or liquid texture to it.

We have been through feeding therapy (until our insurance ran out), a dietician (since she only weighs 23 pounds), and had an OT evaluation. The OT evaluator said that she was the highest testing female that she has ever seen in terms of motor skills and coordination. She was at the level of a 4 year old. Therefore she did not qualify for OT, even though she was extremely below average on the sensory section of the test. According to the OT person that we saw, they deal with the motor issues in getting the food from the plate to the mouth. Since that was not our problem, we were denied OT services. She tossed us back to feeding therapy. Sigh.

Our pediatrician also sent in a request for a Developmental Pediatrician evaluation for DD. However that was denied as well by the Developmental Pediatrician, based on a questionnaire that we (the parents) filled out about when she rolled over, walked, spoke her first words, etc. She hit all of these milestones at ridiculously early times.

DD is fairly outgoing and social. She plays well with other kids her age. She reads facial expression in books, and understands the emotional component of stories. She just has Sensory Issues.

I struggle with the same question of whether it is a fundamental problem with development, or tied to gifted over-excitabilities. Either way, it makes life difficult. Her older brother, DS11, is a DYS and has similar (but less severe) sensory issues.

What kind of food avoidance does your child have? And what do the sensory seeking behaviors look like? Or direct me to an older post where you have discussed this? Has anyone else received OT for a purely sensory issue, when there was not a motor issue as well?

I would love to compare notes and trade any advice or suggestions with you or other parents. Sometimes the best strategies that I have learned have come from this board and parents who have BTDT. Sorry I can't be of more help, except to commiserate.

I agree that a Neurosychologist or a Developmental Pediatrician is more likely to be able to tease out these complicated situations than an OT, (although some OTs with backrounds in 'Sensory Integration Disorder' are excellent) the bottom line is that if a child is gifted in someways, it is very difficult for any professional to fully tease out what is going on. Even though the people who post here on this board 'get' 2E kids, we don't reflect the general level of understanding of 2E in the U.S. If the Eidies are taking patients they are a good bet. Likewise any of the co-authors of 'MisDiagnosis and Dual Diagnosis' book.

I've been reading 'Bright not Broken' and it looks like there is a wave of folks who think that ADHD is really part of the Autistic Specturm, just that the ADHD kids get blamed for their behavior while the ASD kids get understanding for having brain dysfunction. I'm not quite ready to agree, but I do wonder if there are a whole bunch of kids who are using their above average intelligence to compensate for ASD-like difficulties to the point where they don't qualify for services that they actually need.

We came in through the special needs door, with an early diagnosis of NVLD, which didn't seem to help, but at least it pointed us in the direction of OT, age 7, which helped quite a bit. At the time I was only vaugely aware of 'Gifted Issues' but had been doing way too much unconsious compensation just based on my own memories of being different. The OT eval took a while, but it was obvious that DS was quite behind in certian tasks and his year of OT appeared to help tremendously.

For all the folks who have been told crazy stuff by one OT, I'd recommend to look for one the specializes in pedicatric sensory intergration and try (at least by phone call) again.

Best Wishes,
Grinity

Our DS9 (2E, Asperger's) had significant food issues. For him, the cause is not primarily sensory, but rather anxiety; novel foods made him anxious, so he restricted his diet. His anxiety about food goes up and down in parallel with stress and anxiety in other areas of his life. However, we have made huge progress in this area. We had to work on flexibility in other areas of his life before we could tackle the food issue-- it took a lot of doing, but he eats well now.

Feeding therapy programs vary widely in their quality. I'd give preference to one that is multidisciplinary (includes a team of OT, GI, etcetera, so you know you aren't missing something).

Around here it is no problem to get OT for feeding alone without other motor issues; again, though, not just any OT has the expertise to actually succeed in this. We know of one truly qualified OT for feeding in our reasonably large city, whom we found through a specialty feeding clinic.

Ultimately we got much further on this problem through behavior therapy than through OT. The successful OT had not just regular OT training, but also quite a bit of knowledge about behavior therapy; and our separate behavior therapist (not an OT) got us the biggest gains of all.

DeeDee

Anyone who thinks that ASD kids normally get understanding rather than blame hasn't visited many schools... or talked to the gifted summer camps or private schools that won't accept these kids.


Yes-- true in significant numbers. 2Es on the spectrum are typically diagnosed late, and it is much harder to get them appropriate services.

The idea of "OEs" (it has never been proven that OEs are real to my satisfaction) makes this problem worse by taking symptoms that are truly interfering with the child's life and development, and writing them off as quirks of giftedness, which can further delay treatment.

DeeDee

If there was an 'agree' button here, I'd be pressing it!

Strangely, if seen plenty of situtains where the idea of OEs has been helpful to families, especially if Mom's OEs are different from kid's OEs, when the OEs weren't interfering with the child's life EXCEPT that they freaked out the parent-in-charge. (this doesn't speak to if the OEs are 'real' or 'statistically provable' just useful as an idea)

And I've seen just as many examples (usually where Mom's OEs line up with the kid's OEs and we Moms say 'oh that's normal, no on likes to walk around with the seams of their socks wrinkled up - yes, that was me and my DS) where true interferance with the child's life and development was ignored and brushed aside because gifted kids are expected to have OEs. (Even in families that haven't heard of gifted or OE - fi there are enough siblings and cousins then it starts to look normal, yes?) I'm just very grateful that my DS got a chance to have the OT - and I wish it was earlier - and that he seemed to take a giant leap forward while doing it.

Another "agree" button from me.

The first time I received the suggestion that I should take DD in for an eval was when she was 3, but pediatrician said she was much, much too young. She was so bright and therefore "quirky". But when "quirky" gets in the way it needs to be investigated.

I am biased but I think 2Es truely get the worst of all worlds - they often are shut out of gifted programs because of something about them (behavior, etc.) and the typical public-school pull-out is more for the 1E gifted. 2Es don't necessarily qualify for support for their other needs because in many cases they need to be failing their grades to do that, and because so many 2Es have such high IQs they do compensate.

Even if they are seen or written off as quirky because they are gifted, when they are with a group of 1E kids they seem very different, and everyone can see it, especially the kids. The hardest part, I think, for their self-esteems is how hardly anybody understands them.

so that's my soapbox speech for today...early evals with high-repuation folks, if you can swing it.

To me, this does not read as SPD, necessarily, so not sure the OT eval is the place to start. So I agree with PP. Some things about OT evals, at least in my experience, that might help you.

First, the SPD aspect of the OT eval is primarily based on a checklist filled out by the parent on some specific questions. The therapist then compares your answers to the "normal" answers to see if your child scores outside the realm of "normal" or functional sensory processing. So, for example, many people or kids have sensory aversions, but it may not be interfering with their lives and so is not really SPD.

Second, the OT eval is really designed to determine if OT will benefit the child. They usually then recommend a certain number of sessions and set certain goals, each of which to be re-evaluated when that time frame is up. If you are not interested in doing the OT, I am not sure that the eval would be worth the expense. It is really in the therapy that they get to know the child and can provide the kind of info that you are asking about. So, for example, the eval is not enough time for the OT to suggest a sensory diet designed specifically for your child. That is developed over the course of the therapy sessions (although, they may have some very helpful general suggestions). SPD manifests very differently in different children so it takes time to learn the specifics of the individual.

So the neuropsych eval is probably a better choice. Regarding SPD, I found this site to be very useful www.sensory-processing-disorder.com
HTH!

I realized I "agreed" with getting the eval but didn't specify that I also meant the neuropsych which would be much more thorough.

Also, if your child is verbal with you, it's probably not too early to start working with him to communicate how he feels and what is going on and when you try different things at home, why he liked it or didn't... He's still really young but the earlier you can start working with him to articulate, the more he'll be able to self-advocate and feel more confident about helping himself.

The self-regulation skill is very powerful and it's a great life-long skill to have. Even some of my family members who have not been particularlly supportive have noticed how my DD has gotten very good at self-regulation. She's actually better now in some ways than many "typical" children her age, because she has to work so much harder at it.

Thanks everyone for your replies. There is so much here that I want to respond to! Sorry if this gets long…


This is exactly my worry, but I'm wondering if DS is too young to have a neuropsych eval done? Somehow I don't imagine him testing well at this point. I found a place near where we'll be staying that does "Developmental Evaluations" but they seem to only do neuropsych evals for "neurologically impairing conditions that could adversely affect adaptive function." I'm going to call them today to see how long it takes to get an appt and the cost.


That’s exactly my problem. DS is probably advanced in his motor skills (makes up his own routines with rolls, flips, and an almost headstand) and verbally, so I am afraid that his other challenges might be overlooked.



Yes, sigh.




Where to start? He pretty much only eats some soups, rice w/ketchup, plain pieces of meat, french fries w/mayo, and random fruits (he'll love something one day then not eat it again for months). He doesn't seem to recognize when he's hungry or connect it with eating. He freaks out if the food is the wrong temperature, mixed on his plate, not super super fresh (absolutely no leftovers or bagged lunches), and I could go on and on. He likes to chew things but he spits them out instead of swallowing. He still nurses because otherwise I'm afraid he would actually starve himself. Did the dietician help with your DD?

To answer your sensory question, DS has some seeking (rough play, climbing, bouncing, jumping, throwing himself on floor/grass/furniture repeatedly) and avoiding behaviors (food, touch, baths, hygiene, dressing, and diapering before he was potty trained). As a newborn, he had to be in constant motion or he'd cry. He and I would spend between 3-4 hours outside every day just to stay sane. I got a trampoline for him this last Christmas which he jumps on throughout the day, and both DH and I have since seen a different little boy recently.


DH thinks an evaluation is pointless/unnecessary because he doesn't think anything is amiss. I'm not sure how much to push for an eval because there don't seem to be that many follow-up therapies available here. I think my husband is afraid that the wonderful things about DS will get lost or overlooked if we have a label, or that we're rejecting DS somehow if we don't just take him as he is and make things work.

Well, I called and there's a five month waiting list for the developmental eval after the paperwork is submitted. I think I may get that ball rolling for when we're back in the States in 2013, but it would be nice to get something sooner. So now I'm wondering, is an OT eval better than nothing...?

I think OT eval is better than nothing, but do fill out the paperwork for the developmental eval, you never know when a last minute cancellation is coming your way. And they should be flattered that you are traveling Internationally.

Anyway, back to OT, do sign up. In advance read a few books so you'll know what to observe and ask about. Read:

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, Revised Edition by Carol Kranowitz and Lucy Jane Miller

and to get started now, read:

The Out-of-Sync Child Has Fun, Revised Edition: Activities for Kids with Sensory Processing Disorder by Carol Stock Kranowitz

But those didn't really sound like my child until I read a few of the articles from -

Uniquely Gifted : Identifying and Meeting the Needs of the Twice Exceptional Student (An Avocus Advocacy in Education Title) by Kay Kiesa and Kiesa Kay

Best Wishes,
Grinity

Is there no other practitioner in the area you could call? I'd get on the cancellation lists for every suitable neuropsych in the area, and hope for a cancellation in the right window of time.

An OT might be able to point you toward useful strategies, but I don't think they are going to be able to give you reliable or complete diagnostic information.

DeeDee

I had meant to ask more about this... DS and I do talk a lot about feelings and we have "what would have been a better response?" or "what should you do when you feel ____" type conversations. What strategies/dialogues did you use with your daughter?



"suitable" - that's what I'm worried about. Most of the ones I've been able to find seem to specialize in adolescents or the elderly. And I'm not sure I can pull together the necessary information/records to take with me in time. I should have started sooner, but it's an unexpected trip due to a death in the family so testing wasn't even on my radar yet.

You don't think DS is too young for a neuropsych eval? I'm all for it but am afraid he won't sit still for any of it, will scream his head off and insist we leave if he thinks the psych is a "scary man" (or woman), or will just be completely non-cooperative/silent. What does a neuropscyh eval involve for a 2 yr old?

We'll be in Maine, I'm searching in the regional section to see if I find any recommendations...

Somerdai, if there's a children's hospital where you're going they will undoubtedly have someone who can evaluate a 2 year old. You could also look here (there's a search feature): http://www.aspergersyndrome.org/Local.aspx

HTH,
DeeDee

Somerdai, regarding "I had meant to ask more about this... DS and I do talk a lot about feelings and we have "what would have been a better response?" or "what should you do when you feel ____" type conversations. What strategies/dialogues did you use with your daughter? "

This post was longer but I tried to chop alot of it off...believe it or not. It’s still long! I'm just focusing on getting the child to talk about what's bugging him/her to develop a vocabulary about that.

I admit that I did not work on this when my DD was as young as your DS. Not until closer to age 4. Besides being extremely active and alert baby and having alot of issues around her hearing (certain noises and screechy or echoing environments) and head (extremely sensitive to hair brushing) she was a very happy toddler and tons of fun. She didn't have separation issues and never issues with food, though we found out through trial and error that she has bad behavioral reactions to all the artificial dyes in many foods, toothpaste, etc., so many kids’ things here in the U.S.

To answer your question about what I did when I started (and keep in mind she was older than your DD). A SENG webinar taught me to do something like “HALT” – to get the child’s attention right when they’re first agitated and say a few words to give them a choice of what they might be upset about. It’s to teach the child to

HALT meaning “Hungry? Angry? Lonely? Tired?” because those are sort of basic things that will break down many kids. The idea is that they should at least be comfortable with those basic needs first and then move on from there.

Maybe you could pick a few words that closely identify/describe what bothers your DS the most – like when he is having his separation issues, or what bothers him with the food. Maybe if it’s texture (I had a little cousin who was extremely sensitive about food textures) you could use non-food objects to teach him the words like “slimy” “rough” or whatever is the case. You'll have to fill in the "blanks" for the details of your DS.

The basic thing we’ve done with DD is 1) anticipate when she’ll have a problem due to patterns from previous experiences and give her the tools to deal with it...if it will be a noisy environment, she can wear those kid ear plugs or the food dye issues , to prepare an alternative. This works very well to give her the power of self-help and it makes her feel very confident that there are ways she can deal with situations and environments. Children’s birthday parties have been very challenging. If she goes, she has to deal with all these issues since they always seem to be at noisy, hyper environments and have horrible colored sugary food. If she doesn’t go, she misses out.

2) when she starts to act agitated, ask her those “HALT” words (whatever they are) and make everything stop until she stops and thinks about it and answers. TV can go off, she can be removed from any fun...you have to get their attention. Even if your words don’t spell “HALT” the idea is to STOP and make the child focus on what’s happening in their minds and bodies and put words to it so they can take steps to let you help them and eventually help themselves.

The first priority is to train them to stop and think and gather themselves together. It is a process, it takes time so you can’t expect instant results but you can look for indications of progress and celebrate those!

Once the child is really in a state, though, you just have to work with calming techniques and talk about it later. Ask them what happened, step by step. Try not to "lead the witness" by saying, "was it this, was it that?" (that is my weakness). The child might just pick one of your options if they want to move on and get out of this conversation and go have fun again. Make them say it.

You can read your sensory books about types of calming techniques and what would work with your DS with his particular sensory profile.

Of course, like I said, I didn’t do this when DD was age 2 so I don’t know what sort of alterations you would make, but you could think about it and work out a plan.

Like most things with children, consistency is extremely important. Things start to break down during family visits, traveling, anticipation of holidays : - ) but you do what you can.

It’s not easy to do all this and it takes alot of patience and time and optimism. This is my particular philosophy of how I want to raise my child. Everyone takes their own route. But I’m a very stubborn person and I always try again, believing this is best in the long run. Over time we’ve been making alot of progress and I’m pleased with how she is gaining self-control and self-advocacy skills. Of course she is 6 years older that your DS now, and I’ve endured lots of bad advice and rude comments, but the sooner you start the more time you’ll have for good results.

Also the “asynchronous development” issue is something you have to contend with. When the child’s intellect and emotional stages are very different. When the child gets upset it’s like they’re a very smart older person trapped in a little-kid body. It’s so hard for them. But the gap closes slowly over time. Age 8 is much better than 7, and 7 was better than 6, etc. etc.

Good luck. Believe in yourself : - ) Moms don’t always get enough pats on the back to compensate for the bad advice and judgments.

p.s. I think it's a good thing that your DS has good or more advanced motor development (my DD's is always lagging enough to be a concern and to keep her out-of-sync with a more motor-typical child, but not poor enough to qualify for any services, she's just always 'a day late and a dollar short' poor kid) but we focus on things that aren't competitive and where she is just enjoying being outside and moving around.

The reason I say it's good for your DS, even though you worry that it will hide any other issues they might be looking for in an eval, is that can be a way to make sure he keeps his self-esteem up if he's going through 2E issues, especially when he gets older and/or attends school. Hopefully, anyway, a good eval will seperate all the issues.

Well, we're home again. Sorry this is long, I don’t really have anywhere else to spill my guts…

We're not on the waiting list for a neuropsych evaluation yet... I want the results to be relevant for school since I suspect some 2e stuff, so I plan to wait till he's four or so (our next visit to the States). We tried to see a developmental pediatrician (friend of a friend of a friend) but it didn't happen. When faced with the thought of nothing at all, I did go ahead and meet with an OT. She was also the friend of a friend, so it was more of an informal time (no official eval) where I described his behavior and she gave me some strategies for dealing with it.

Here's the odd thing though... the beginning of the trip was incredibly stressful for all of us. My son had spectacular meltdowns every day for the first two weeks. He also had an allergic reaction to some of the food we were eating, so we changed our diet and put him on an allergy medicine. About halfway through the trip, it was like he made some sort of developmental leap and suddenly he was a different child, more mature. He has always been an incredible perfectionist, but now he doesn’t freak out (as much) when he fails and he’ll say things like, “When I’m three, I write my name. G is older so her mommy no have to help her write her name.” I also hear him saying things like, “Practice, practice, practice,” and “Keep trying, Mama, you can do it!” (phrases I’ve been using, what felt like unsuccessfully, for months). He’s now obsessed with counting things on his fingers and figuring out how old he’ll have to be to do everything he wants (light a match, shoot a bow and arrow).

His issues didn't go away completely, but towards the end of the trip, he frequently sat through formal dinners with my family, he rode in the car peacefully, and he didn’t seem to need as much sensory input despite the increased stress of travelling. I feel like I have a four year old now whose emotional maturity is still lagging behind (he does great playing with 5/6 year olds, but put him with another 2 year old and it’s war!) He can tell me now, “I feel mad. I going to kick R. He ruin my toys!” or “I feel sad.” He also reviews his behavior (last time I no nice to woman, today I no scream at her), and if I tell him he did a good job with X or Y, he’ll point out the one failure (I hit H on the shoulder, his sword was down. He cried weeeeeeeee.) We’ve got a ways to go, but it’s a start and I’m so proud of my little guy.

Now I’m wondering… how much of the behavior was just his frustration at his ability vs. cognitive level and perhaps his food allergies, and how much really was/is sensory stuff? Somehow I have a feeling that this won't be the last time I feel amazed and confused at the same time. Thanks for listening, I don’t know what I would do without this place.

Somerdai -

I have an 8yo who was JUST diagnosed with SPD through an OT, as the developmental pediatrician route is something like a 10 month wait... I'm still waiting on the paperwork and our pediatrician said to go to the OT b/c that is where they would send her for therapy anyway.

Traveling is extremely stressful for her (even when she is excited about the trip) unless she has been there before. Then things are a little easier. I took her to NYC in January and the meltdown that occurred was beyond belief. Her poor body was completely over stimulated and between the smells, the noise and going from dark lights to bright lights, she could barely stand to stay there at the peak of her confusion.

I was alone with her and it took all of my strength to keep my patience and hold on to let her chill out and get herself back in sync (words I know now but didn't know then). She eventually felt better and hugging a stuffed animal as we journeyed through the and had a fantastic time. But all of those changes are too much for her. She usually wants to eat only food she's eaten before - it is comfort food so, sadly we were at McDonald's a lot (which we rarely ever eat at home but it mad her feel better there).

If your child would happen to have SPD, it would make sense that he felt better mid-trip... he may have had the time to process the stuff, know how to handle it and know when to reach out to you when he needs help.

For our daughter the food stuff comes from sensory.

We have since found that she pretty much rocks the SPD (as in she has most senses being over responsive, it affects her posture, handwriting, coordination, smell, listening - well, you name it). She is so bright that she covers most of this stuff up very well where it is hard to believe she would have difficulty with anything developmentally. I am getting better at seeing when that fight or flight sensation is about to kick in and since she is so verbal, it makes it easier for her to say "that noise is bothering my super senses." She LOVES that she basically has super hearing and she jokes about it.

Right now we are trying to tackle the dentist, which is about to drive me to therapy myself. I thought we had a dentist who "understood SPD" but after the last appointment I'm not so sure.

If it is sensory, the one thing I've noticed with my daughter is that I can't really rely on anything. Some days things that bother her are the same things she didn't notice two days ago but when I think back, maybe the day before we were out a lot and I know she's super tired or she is getting sick. Goodness... anytime she is sick, there is almost always a HUGE meltdown the day before.

I also don't know what I would do without this place. I know I get a huge amount of peace from seeing anytime Grinity posts b/c she is always a source of kindness and encouragement. Best of luck to you! Keep us posted.

Thanks Christine! My son is very inconsistent too, so I will continue to keep an eye on it. I like the idea of "super senses." He's really into action figures so he'll love that explanation when he's a bit older.