Gifted Issues Discussion homepage Forums Twice Exceptional Finally getting Bear an assessment

The problem is that now we're looking at possibly getting an actual diagnosis, I'm all freaked out. It's like gifted denial, but the other way around. I'm having to let go of the last hopes I had that Bear really was normal, just extreme... Now I'm terrified that they will take a look at him and throw their hands in the air and say "We don't know what to do with him either" or getting a diagnosis, but with nothing that can be done about it. argh....

Hang in there, Wyldkat! I do think the not-knowing is harder than the knowing, no matter what it is. Once you know, you can deal with whatever it is.

Good thoughts for you!

Thanks. The worst part of it is that I have a friend who loves us dearly, but doesn't see us very often and is studying psychology. She is totally against us getting him tested through the state program and has good reasoning for it, except for the fact that she doesn't live with Bear and therefor doesn't know how difficult everyday life is for us because of his issues. She says that getting him labeled this early in life is a bad idea, but I keep hearing that the earlier you get the intervention the better... Sigh...

Wyldkat,

I apologize because I have not followed any thread about the concerns you have for your son. I hope that the assessment is soon so you do not need to have to be anxious for long. I also hope you get some valuable information from the assessment.

I'm DYING to get DS5 assessed, but have to wait until the spring when he's turned 6. *sigh* I could REALLY use the info now to make decisions about next year. But we wait...

<drumming fingers anxiously>

I've mentioned his issues in a couple of places, but not really in depth I think. We're pretty certain he has sensory processing disorder which, for him, causes major problems with transitions, crowds, new experiences, etc... He has all the normal tantrums a ND kid has plus these mega-tantrums that can last over an hour of inconsolable screaming on a daily basis. He's very social in small groups of people he knows, but can be very physical and aggressive with kids, especially his older brother.

I knew he wasn't ND because he has always been above the curve developmentally, I just wasn't (still don't think I am) ready to actually accept a possible "official" 2e diagnosis. It won't change him at all, but it will be "official"...

FWIW DS8 has been diagnosed with sensory issues since he was two. We still don't have a consistent or completely effective method to help but he has improved in many areas with age. It is very hard as you say because the DX does not change much. Just know you have support on here.

Please keep us updated!

I like to look at it this way, if DS7 had been born 100 years ago, he would have made an awesome farm hand. He loves, loves, loves to be outdoors working. I'm 99.9% convinced at this point he will not choose a job in a cubicle. LOL or be a school teacher for that matter. There are so many career fields out there that need sensory seekers, dare devils, acute listeners, etc. The very tactile child might end up being a surgeon or Mike Rowe on Dirty Jobs (Discovery Channel)-LOL Maybe your child who can't stand to wear socks will end up living in a tropical climate with a guest house on the ocean so he won't ever have to wear socks and you'll be retiring in style. (Ok, I'm done dreaming out loud).

I meant to add Good Luck!

Good luck to you!!

OK, so here is what happened. The tested one day and he was an angel baby, although slow to warm up. The tester had to come back the next week because he "surpassed all the tests she had with her." When she came back the tests she ended with were for 4 and 5 year olds and he could have answered all of them with no problems except that he was having too much fun messing with her, grinning from ear to ear and intentionally giving her the wrong answers... {eye roll} She knew exactly what he was doing too...

I'm getting the official results next week, but he doesn't qualify for Early Start because they changed the laws on it last July. Before then he WOULD have qualified. I don't know if that is upsetting or comforting, whether to cry or laugh... Basically it means that he is over 33% delayed in one area (and from what I understand delayed by less in at least one other). They were also amazed at his verbal and cognitive test results. They gave me some phone numbers of places to call, school district and a psychologist ($$$!!!), and I'm going to talk to his pediatrician about it as well.

I don't know where to go from now. There is proof he needs support, but he's not delayed enough to get it. They even told me that if he had been throwing a tantrum when they were there he might have qualified. GRRRR!!!!

Ooooh Wyldkat, I hope you get to keep moving forward and find out some more information!

Best of luck Wyldkat!

We just had DS7 tested Monday. I didn't have it done for a long time, but I kept questioning myself on the possibility that he might have something. Now I'm waiting for the results. I'm apprehensive about the results. I don't want my baby to have a diagnosis, but OTOH, I want him to receive support if he does. So I can understand where you're coming from.

I have my fingers crossed for you.

And me for you!

I need a shoulder to cry on today... We got the results back and if he had scored 5% more delayed in one area he would have qualified. If he had had even a minor tantrum while they were testing he would have qualified. I got the results today and had to deal with minor tantruming from 1pm till 2pm when he fell asleep and then a full blown non-stop screaming tantrum from 2:30-4:00. He wouldn't eat all day long, no matter what I did and I know that had a lot to do with it, but what am I supposed to do pin him down and force feed him which will just make him choke anyway... He would be getting help NOW if he had just done this in front of them. He NEEDS help, the tests show there is significant delay in several areas, but it just isn't bad enough on paper for the agency to accept him. It's not FAIR and it's FRUSTRATING and it's driving me nuts.

Wyldkat,

I am so sorry to hear what happened. Does your report of his behavior mean nothing in terms of the results? Can you video tape the meltdowns or keep track in a journal for a week or two to demonstrate what is really happening on a regular basis? Who was doing the testing? What is the agency? I would beg/plead/demand that they reconsider. It sounds like you have a little boy (and parents) desperately in need of some help. Are there any other places/people that you can seek out for help?
Keep talking, keep seeking help and don't give up!

My thoughts are with you and your family.

Wyldkat, I'm sorry to hear. I agree with Breakaway. Take several videos of him while having a tantrums over a period of time.

To truly make an accurate assessment, they need to see Bear's behavior in all environments. If you can show his behavior at home, it might change their minds.

Let us know what happens.

Don't give up. You can do it.

Thanks! They did take some of what we said I not consideration, but it was very weird what they took note of and what they didn't. For example they noted he could count to 5 when we told them he could count to at least 15 and I think she heard him count past 5 as well. Also they mentioned that he took awhile to warm up, but the "awhile" they were talking about was almost an hour and then half an hour them next time after screaming at her when she showed up and running down stairs. I really don't get the process...

Since he is almost 3 (the cut off of how long they can offer services) I'm not going to spend the effort on fighting it with them. I'm going to talk to the ped. and the people they suggested, especially the school system, and go from there.

We have a friend who is going to lend us a video camera for our Davidson portfolio for Wolf and I'm going to use it to document one of Bear's tantrums. I've been wanting to video tape him for awhile but couldn't think of a way to get access to a camera. I've already done a tantrum diary twice for a week each time.

Early Start was the program and they brought in a pediatrician, a psychologist and ... well someone else but I can't remember what were called.

I am surprised Wyldkat. DS was in a similar early intervention program (under 3 years). It operates on grants/gov't here and is of no cost to the parents. They offered physical, occupational, speech therapy, also playgroups to help work on certain skills etc. along with parent support groups that happened during play groups. They accepted DS and it was there that he was first diagnosed with sensory integration disorder.
Perhaps it is because I live in a more rural area and therefore there are less children needing services so it is easier to get into the system.

I think the camera idea is great. Wolf and Bear are lucky that they have you to advocate for them in their strengths and challenges. If you get some tantrum video I would retry the Early Start as the program really does have a lot to offer - at least they do around here.

Public schools here begin offering services at age 3 in the form of a pre-school program that takes an equal group of children needing services along with other kids. They also provide speech, physical and OT if necessary.

What does your ped. say about all of this? Keep looking for help and don't forget to find support and help for yourself as well.

Wyldkat, have you considered OCD (obsessive-compulsive disorder)?

My gifted dd (now 13) had extreme sensory issues and hours of tantrums every day as a toddler. Everyone told me she would grow out of these terrible 2s, but her 3s were even worse and by her 4th birthday we knew we had to get professional help.

She could not handle transitions at all. Any change to her normal schedule could set her off. She was great out in public and everyone thought she was a little angel, but she would pen it all up inside and let it loose once she was home. These tantrums could last for hours and were becoming violent. In addition to tantrums, she couldn't handle socks, underwear, tags, new foods, bright lights, loud sounds, etc.

We audiotaped some tantrums and kept a log book for about a month documenting what triggered the tantrum and how long it lasted. Then we visited a child psychiatrist. She was diganosed with atypical OCD and put on a very small dose of anti-anxiety medication. The medication began kicking in after a couple weeks and the tantrums slowly became less and less intense. After about 3-4 months of medication, she no longer had any sensory issues and her tantrums ended completely. The medication was a life saver!!

Now she's 13 and still on the same medication (an adult dose now to go with her adult-sized body). We always know when it's time to increase her medication (as her body has grown larger) because the tantrums, sensory issues, and inability to cope with change/transitions appear again. I have no idea how we would have survived the last 10 years without her medication.

It's very atypical OCD. She has no germ hang-ups or weird rituals. Her only compulsion she has is that life must be absolutely perfect and predictable. But, that compulsion goes away as long as she swallows a small pill every night.

I've considered everything at this point it feels like. I'm not certain about OCD because it isn't every time there is a transition. He has good days and bad days and I think I read OCD isn't an on and off thing, right? Also chiropractic adjustments that help autistic kids help him, but if he is on the spectrum it would probably be non-specified because he doesn't fit into any of the other categories!!!

Also everything has to be "just so", but the "just so" changes. Like the bottle has to be to EXACTLY this level most days but one day it has to be to THIS level or the world will end...

Breakaway, it was a similar program, but they changed the laws about who was accepted in July. Before then and he would have qualified. I'd reapply with the video, but he's going to be 3 in Feb. so by the time the paperwork went through he'd be too old for the program.

With OCD, there are certainly good days and bad days. It's simply one more idea to evaluate. If you saw a psychiatrist and explored that route and it did nothing to help then you know it wasn't correct and can cross that one off your list.

Quick update on Bear. We've gone through the school district and they can't give him OT because he doesn't have other problems. Good news no autism or other issues, but bad news is there are definite significant sensory and auditory issues. They just aren't enough to get him help. Sigh... Bonus is the psych and OT are going to talk me through home OT, some of which is already working really well. 3 nights and counting without waking up during the night and actually going to bed easily!!!! Woo HOO! They've also lent me a weighted blanket that we're going to try out starting tonight.