Gifted Issues Discussion homepage Forums Twice Exceptional Pursue OT eval or not? suspect SPD

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.