Newbie with lots of questions...

iVillage Member
Registered: 08-08-2004
Newbie with lots of questions...
5
Mon, 12-19-2005 - 6:47pm

I have a daughter who is 12.5 years old. She was diagnosed as ADHD at age 6/7 and started meds for that shortly after being diagnosed. About a year ago she going thru puberty started to get more snippy and less able to listen to our words. The beginning of this year she had definate opinions of what she would be willing to do and what she wanted no part of. Her school work this year (had been merit role 2nd grade thru 4th...then solid B-C student and not is flunking nearly all of her core courses). About a year ago I said the Peds Dr. (who was managing her meds and ADHD symptoms). She needs her meds upped again or changed. It took me 3 months but she referred to a psychiatrist (who in my opinion was just about worthless). Unwilling to look at big medication changes and finally said because your dd is unwilling to talk with me I cannot manage her meds. He mentioned We might need to hospitalize her if you are frightened of her becoming violent. DD pushes, scratches but never has she become violent. I was explaining how dd erupts over little things and he said it might be an emotional developmental delay. This gave me no where to look for help and made me just more frustrated.
Fast forward to today, last Friday we had an appt with a female psychiatrist (dd deals better with females). She changed to meds that already are working better for her and she gave us the diagnosis Asperger's. Today she came home cleaned her room and also started in on homework right away.
I am not crazy, I am not a bad parent, I am not just seeking treatment for a child that does not truely need help.
The thing that angers me is that at age 5/6 we saw a social worker that worked in a office that had it's own slant on things. They believed that kids that were adopted always have bonding issues. She saw dd's inability to give eye contact and easy explosions of feelings and inability to listen to me and saw her as a non-bonded child.
Since this time we had seen 4 more professionals that also could have stopped this insanity and they missed the diagnosis. With seeing the right person we could have had a diagnosis and a treatment course that could have saved my DD a world of hurt and misunderstanding.

MY QUESTIONS: How long before we get a certain diagnosis? Do any of you follow and diet restrictions to help with the symptoms? I plan to share diagnosis with the school...will this along with failing grades and ADHD finally get her help that she needs. How do I get past the hurt of not being able to get her diagnosed sooner? She is a sweet girl that has many talents and gifts.

Karen

Karen


anything is possible 15 mins at a time


iVillage Member
Registered: 03-26-2003
Tue, 12-20-2005 - 1:24am

Hi there,

My oldest is an 11.5 yo Aspergers Girl. Many puberty is tough.

First, how long before you get a certain diagnosis - It sounded like you already got one from the psychiatrist. A psychiatrist can diagnose AS, but did she request more testing or do you mean through the schools? School won't dx Aspergers but she may fit under autism for educational purposes. If not the medical diagnosis she does have of AS or ADHD will qualify under "Other Health Impaired" if it is impacting her educationally.

Yes, we follow a diet. Though we are not totally strict about it because of school and other things, it has changed alot and I have found it helps. My kids are on an organic low/no sugar, low glycemic type diet. I can give you some more info about why we chose what we did if you like. But I am too tired now. Cutting out sugar and refined foods is really important I feel and has helped alot.

I don't know how you get past the hurt. I think when you see her start to make improvements and be happier that helps. My oldest dd was diagnosed at 4 but my younger son wasnt diagnosed until 7 and he should have been diagnosed at 3. (long story) He wasn't delayed like my dd was, but he was significantly impacted. She has made tons of improvements and has always been mainstreamed and is now in a special program in middle school but mainstreamed for all academics. He is in a special day class and just started back in some mainstreaming. He will likely end up in a special school due to his AS in middle school. I kick myself nearly daily for not getting him help sooner since alot of the diagnostic delay was our own denial.

What has helped is the progress he has made in the past year once we really started getting him the supports he has needed. I still kick myself, but it doesn't hurt so much now that I feel he has a future again.

Renee

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Registered: 08-08-2004
Tue, 12-20-2005 - 7:10am

Because we have been to many Dr's she had school skills testing (neuro-psychology) at a major hospital in town. They found little that seemed out of place, only mild word discrimination (with similar words) and the attention deficit problem of course. This was testing done with one tester (not 6-7 different teachers) all in one day and she did not have to deal with kids making fun of her, noises and things distracting her etc.
It was call Neuro-psychological testing, However, when I mentioned the sensory component she just descibed it as odd not in anyway related to her problems. I should say she needs some education about what Asperger's is all about. I certainly would think that Asperger's fits into the neuro-psychological condition. In her report she also stated that "I had talked with to DD like she was a much younger child"...shouldn't this have been a clue that she was not developmentally the same as kids her age?. I was being sickening sweet with her because my DD really did not want to complete the testing and that day (we had got the testing spot last minute) and she was suppose to be crayfish catching in a summer program. The main reason she agreed to sign up for a summer outdoor program. She was so disappointed, but I did not want them to see a meltdown, maybe they would have taken more note of what I was saying if she had had a melt down in the Dr's office.

I am hoping the new meds makes a difference, it still has some kinks to work out ....mainly the inability to sleep a whole night again. Up and wandering from 3-5:00 am from two mornings in a row. We have dealt with poor sleep before and we will try our arsenol on the sleep problems again. It is too important to have her functioning at her best to not give the new meds a real try.
Thanks for the input,
Karen

Karen


anything is possible 15 mins at a time


iVillage Member
Registered: 03-26-2003
Tue, 12-20-2005 - 11:09am

Well, I guess just like many other doctors, neuro-psychologists can be clueless too. It seems she should have picked out from the pattern of symptoms your daughter showed as well as her test results that AS would have at least been a possibility. Cait also tests with attending difficulties, etc. Her over all testing comes out average but if you look at the subtests there is a scatter all over the place which is common with AS kids. They will have some areas of real strength and areas of weakness and they will average each other out. BUt when you look at the individual subtests it is where you see the problems.

My more severely ASD son actually tests better than his sister on psychological testing. But his sensory needs are much worse as are his auditory processing and his ability to maintain. Many adults with AS will tell you that the sensory overload often is the catalyst to a host of there problems. I find it very old and uniformed that a neuro-psyche who just dismiss sensory difficultis.

Plus it is not uncommon, particularly for older bright AS kids, to do well in 1:1 testing type situations where they don't have all those natural challenges causing problems. For instance speech and langauge testing. There are tons of books and such where you can read about how kids with AS who can't hold a conversation can ace language tests that are supposed to test that skill. But in a small sterile testing environment where they don't have to try and decipher non-verbal langauge, social norms of thier peers, figures of speech, etc, all together, then they do ok. My kids are very much like this. Neither can hold a conventional conversation with thier peers or even anyone else unless it is about thier obsession and even then it is one sided. But thier testing turns out "within normal limits"

I would just go with the psychiatrists diagnosis as your official one. Good luck with the new med.

Renee

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iVillage Member
Registered: 03-26-2003
Tue, 12-20-2005 - 1:01pm

Hi Karen! My DS (7 yrs) was just (officially) diagnosed with AS last week. The first time I even heard the word Aspergers was 3 months ago by his private therapist. DS has had "behavior" problems at school since the first day of preschool. Not ONE teacher has ever mentioned AS or any other disability - several of those teachers have Spec. Ed backgrounds. When I received the official diagnosis I went through (and am still going through) a variety of emotions: relief to have some idea of what is wrong, overwhelmed at everything I don't know, scared of what will happen with DS, sad that he might never have good friendships, but mainly ANGRY at all of the so called professionals that have encountered my DS and treated him as nothing more than a bad kid with parents who spoil him (actual quote from a preschool aid).

I know that hanging on to the pain and frustration both you and your DD have been through will not help either one of you. I am still in the process of accepting DS's diagnosis and trying to help him any way I can.

Does your DD have an IEP? We just started this process for my DS. We just got the official diagnosis and now the school is going to run a MFE (multifactored evaluation). That will help write his IEP. With your DD's history and diagnosis....I believe she is eligible for resources & services to help her in school. You have a right to request that a MFE be done to get her an IEP.

I guess my best advice is to not look back - we can't change the past.

HTH - GL,
Christie

iVillage Member
Registered: 08-08-2004
Tue, 12-20-2005 - 3:08pm

I really agree with you about not holding onto the ill-feelings. This is all really new to me with the Asperger's. We just had the appointment on Friday, at first I felt elated that we finally had a diagnosis to explain some of the quirkiness. Do not worry about DD/me, I am more interested in getting her help and arming myself with information.

I do feel sad that it has taken us this long , but thankgoodness that this Psychiatrist had the knowledge and shared her thoughts with me in the first meeting.

It has just been my experience that the school has not been that helpful even though dd is clearly in need of help (more clearly this past year than in the elementary years). We will meet again in January and it is my hope that they will even open up an IEP (in the past they just had a small meeting and offered minimal accomodations) that were very minor and not all that much helpful to her( ie 5th grade 1.a checklist on her desk to help her organize herslf in the morning and after school : 6th grade 2. extra help after school with the math teacher-which is opened up to anyone in the math class needing help). With a different medication we might be able to see a difference in her grades just because she is on more appropriate meds now.
I am looking forward to seeing how she may blossom now in therapy ....I realize it may be a slow process but I am so excited to see the changes in her. I am looking into some cards I saw advertised .....that help with teaching social skills.
My other thoughts are to get her involved in a after school acting group and the a local major dept store here offers classes in ediquitte. (I worry that this may be over her head at this time) I am going to ask the therapist next time we attend in January.
thanks for all of your great ideas.
karen
I guess my point in writing about the missed time was ....I wondered if this was common place??

Karen


anything is possible 15 mins at a time