Where do I go from here?

iVillage Member
Registered: 02-01-2005
Where do I go from here?
4
Tue, 01-24-2006 - 6:41pm

Hi! I sent this a few days ago, but it didn't show up--at least not for me, so please forgive me if this is a repeat!
My ds just turned 6. I checked in with you all about a year ago with suspicions of Aspergers and ended up taking Ethan to a psychologist for evaluation. The dr. saw him for 30 mins!!! Dr. said too early to diagnose and since the main problem seemed to be in Ethan's conversation, I should just 're-direct' him and all would be well. ARGH!

Fast forward to now--half way through Kindergarten. Ethan is friendly and plays with others--somewhat. He never is a discipline problem. But he tends to go off topic in conversations and sometimes adds numbers randomly in his sentences. This is starting to cause concern with teachers; when asked a question about swimming, last week, Ethan's answer was " the water evaporates and goes up to the volcano and the llama comes down..." A friend nudged him and told him it was lava-not llama :^) But this is extremely typical of Ethan's speech. He often strings words and thougths together that have no connection. He is rarely on topic. In the past two weeks, a few other things have started to surface. First, Ethan has started telling me that he is 'bad' and no one like him. He has friends and so far no one has been mean to him, so I'm not sure where this is coming from. He is also becoming VERY sensitive to correction and even the slightest "Ethan, let's do it this way," will bring tears and a huge melt-down. I thought he had grown out of the melt-down stage :^( He says I am mad at him and he is bad. Yesterday I took him and dd to Wally world to spend b'day money. When dd and I turned down the aisle, Ethan kept walking and ignored me when I called several times --VERY a-typical. When I got him back to me, he was distressed and said he NEEDED to keep walking in a straight line. At times it seems like he doesn't even hear me when I talk to him, since he is so focused on what he is doing.
The speech teacher at school called me when I asked for a referral and told me (before she ever met Ethan) that "aspergers' is the latest catch-all, just like ADD" and it is very rare. I know I will get no help from her.

Since Ethan is pretty well integrated into his school and has friends, I think the Dr./teachers think I am imagining this. But I know there are levels of Aspergers and I just want to find someone who can help me, help my ds.

Advice please!!
Blessings,
Debbi

iVillage Member
Registered: 02-24-2004
Wed, 01-25-2006 - 2:23pm

Debbi,

Welcome! My son will be 7 on Sunday, and he was dx'd as HFA when he was 5. Children who are high functioning or have autistic tendencies do have the ability to "hold it together" at times. My son, Nathan, does very well at school. His quirks are somewhat noticeable, but he manages fine in class. Nathan also goes off topic when he's talking, and it can be difficult to understand what he's trying to tell me! He is also very sensitive and gets upset easily with himself. Huge problem with self esteem! He will, at times, play with other kids, but does prefer to be alone most of the time!

I would get a second opinion if you are still concerned about your ds. A neuropsychologist or a developmental ped is who you should have him see. Make sure that they do a thorough eval too. Nathan was seen on 2 separate days...total 4hrs. I also filled out lots of paperwork prior to the appt.

There are different levels of autism, some mild, some more severe. Nathan's teachers thought I was nuts too!! Til he had a meltdown that they couldn't stop!! That was all it took. Even having a dr dx, didn't sway them at all...til they actually saw it! This happened when he was in kindy. He is now in 1st grade...only had a couple of minor moments, but that's all. He's receives speech, attends social skills class, has an aid, and also gets lots of help and extra direction with his work.

HTH,

michelle

iVillage Member
Registered: 06-25-2003
Sat, 01-28-2006 - 11:12am

Debbi,

Welcome back. Therwe are definite red flags in your description of you son.

I'm sorry you had a bad experience with that psychologist: here are my recommendations:

Write up a comprehensive profile of you DS: strengths weaknesses, likes, dislikes, developmental history, and quirks or idiosyncracies; past or present, that you have observed in him. This is a great thing to do and maintain (in about any child), so you can track his progress against himself on an ongoing basis, and see which areas are improving, and which ones he may need help with.

1. You have two or three option on what yo do with this profile:
Send a copy to your pediatrician, and book a consultant visit (no kids) to discuss options.

2. Book an evaluation with a developmental pediatrician or pediatric neuropsychologist for a full evaluation. (this may be expensive and most insurance does not cover it)

3. Book a meeting with the Director of Special Education for your School district, and present it then.

I would probably do 1,2, and 3 in order, having collected additional information from #1 and #2 for #3. YOu should also request a full Occupational Theraphy evaluation for sensory issues at #3.

Speaking of sensory issues: Have you checked out the possibility of APDs (auditory processing disorders) or CAPD? (central APD), because it sounds to me like he may have some some AP issues -not hearing his name in a crowd, mishearing words lile "Llama" for "Lava", and even the wally-world incident (sensory overload -trying to maintain control by concentrating on an assigned task), could indicate red flags for this.

Sorry if I have just worried you more. (I really am trying to help!). Good luck.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 02-01-2005
Sun, 01-29-2006 - 12:28pm

Thanks for the input!

We have an appointment in two weeks--I called the Dr. and said I thought he was in regression and asked if they could get us in quicker and they did! It's funny, today he is just as happy as a lark: playing nicely with sis, singing and doing everything I ask the FIRST time! Yeah!

I am looking forward to seeing what this dr. has to say and his recommendations.
This group is a GREAT resource!

Blessings!
Debbi

iVillage Member
Registered: 01-24-2006
Fri, 02-03-2006 - 3:29pm

Hi

I am actually new to the board but I do have experience dealing with the schools on ASD issues.

My DS CJ is almost 11 and was diagnosed as AS just over a year ago. Like many other AS kids he started as OCD and then AD/HD.

My suggestion would be first go to the school and request an evaluation. In many cases to get services through the school they have to get diagnosed through the school.

If he is diagnosed through the school there are many services that you son may be eligible for such at OT, speech and language, resource room and social work for example. You would also be able to set up an IEPT with guideline that the school needs to follow, such as how to handle a tantrum or how much of a certain service you child will recieve.

I live in Michigan and have had to become familular with our paricular laws but my friend said the IDEA which is federal covers this also.

As far as the MD saying he was too young, did he have you fill out a behavior inventory or anything else listing his behaviors? I have found many MD still think of Asperger's as the new AD/HD that people are "labeling" their kids with. I say let them live with what I deal with and still say it isn't real. I do know that many with AS are not diagnosed until 6-8 yrs of age when social problems become more noticable.

It does sound like your son has some of the same signs my son did early on. CJ was able to "hold it together" until he hit 1st grade. That was when the AD/HD diagnosis came.

I still have people that seem to think that bad parenting, too many kids, over-diagnosing..... you name it is the cause for his behaviors.

Good luck
Kris
5DS
ttc #6

Photobucket