New to WP - evaluation next month

Post Reply New Topic

I have been searching the internet to find a forum and I spent quite a while reading the posts tonight and I believe I have finally found the perfect place for me. I am just going to introduce myself and then post the rest tomorrow.

I am the very blessed mommy to two children, my daughter is 9 and the one being evaluated for ASD next month and a son who is three.

I just want to say thank you for sharing so much and how much it has helped me reading your posts tonight.

Until tomorrow...

Welcome to WP

Well as my three year old seems to think he has slept enough for one night and I hadn't been to bed yet - I will add some badly needed details to this introduction - that is what I get for staying up too late

Our daughter was a dream as a baby - just easy as can be. She was in fact fantastic until a bit after she turned three. As she was our first child and I am the youngest and my husband is an only we had no means of comparison. She was putting two words together at 10 months old and walked just under a week before her first birthday. Now that I have had another child and one who is often delayed for a time before catching up, I see that she was quite delayed in fine motor skills. Quite honestly she was so advanced in other areas or so I thought that I just thought she wasn't bothering with the 'boyish' things.

In preschool she was in a less than desirable environment {that is MY opinion} however the one thing that I was grateful for was that her teacher indicated to me that she thought L had some sensory issues. Gave me some books to read and I was like - yep that is her. Kindergarten went pretty well and then first grade was a nightmare - I will never allow her to be in a classroom with another teacher like that. I asked for an eval for ADHD - I had to wait months for the teacher to do her part. When the results came I had no idea what they meant and so I called the lady at the Intermediate School District and left a message asking her to explain them to me - that was in Dec 2007, I am still waiting for her to return my call.

By the last few months of 1st grade she was pulling her eyelashes out and I asked the ped for a referral for therapy. This 'Dr.' dx her with ODD and told me it was my fault. She saw her one time and the rest of the visits were for me. I went a few times and then never went back - nothing she was suggesting was working anyway. I have to back up and say that I know something changed in the year she was three - that is when it all started. Every day since then has been a struggle with battles and refusing to go to school and screaming at me and just awful for her and me.
In third grade she was being bullied and I took her out of the Catholic School she had been attending - at that time I was working full time and going to school full time and had another child. In our area we have 'schools of choice' and since the school {public} I wanted didn't have room, I drove her 40 minutes each way to another for the rest of the year. It was rough - I went to see the counselor there {same ISD} and he basically rewarded her for going to school without giving me a hard time.

My good friend is the Early On coordinator here and I was telling her that the counselor had asked me if I wanted a child study and I said yes and then never heard another thing about it - she made a referral to the ISD OT for when school started this fall. The OT said that since she was in a new school and the teacher didn't know her - if the teacher did not have concerns they would not evaluate her for anything. I do know that I could have asked in writing and they would have to do it however, when the OT went to L's school to 'observe' her she didn't have the paperwork and couldn't even tell the teacher her name. Not thinking that is who I want making any judgments or decisions for my child.
I made an appointment with the ped for a consult. I indicated that I felt it was possibly and ASD {Aspergers} and while she did give me the name of a doctor, she does not think that L will return with a dx of ASD because she talks to her. Really? Ask her to interact with her peers and see if you get the same result - geesh. Anyway, I called that same day and got an appointment with the doctor and had that appointment on Tuesday the 16th.
One of the things he asked me that I really hadn't thought of was this "was it almost too good?" he was asking about her first couple of years of life and looking back at it through that lens, I would have to say yes.

He scheduled her for a two hour block on 12/20/2010 and sent me home with three assessments for me to fill out with my husband.
Oh and this one is really good - she started saying 'why don't you just kill me?' then that turned into 'I want to die' and 'I want to kill myself' - I immediately brought her to a friend's mother who is licensed counselor and my then brand new 8 year old completely snowed her. I asked at the end of the report session - who she was talking about. She seemed completely unfazed by and 8 year old who kept saying she wanted to die and told me that she felt L was a wonderful, well-rounded child. I admit she is wonderful but she is also extremely difficult at times. We didn't go back and after a while she stopped saying those things. Sadly, she has been saying them again the last few days and today or rather yesterday said something like that in front of her classmate who had come home with us from school.

Thanks for reading if you got this far. I am very thankful that I have finally gotten someone who will listen and agrees that she should at least be evaluated.

Hi and welcome. I have a 15 yr old girl who's in the evaluation process. We'll hear officially in Dec. but it seems clear now she is on the spectrum somewhere.

a couple of things:

Interesting that the doctor asked you "was it almost too good?" I had never heard this before until I read a snippet about 'over-compliance' in an autism book at Borders - about the child being too good or too compliant in the early years. This is totally true of mine. We could tell her "don't put that in your mouth" or 'don't touch electrical sockets" or whatever and she would never do it. Never, never, never. And she would point them out and tell us "don't touch those" or whatever in other places, other environments. I'm talking super early, like 12 months, and even before she could talk she would point at them and shake her head 'no'... I could not understand why people couldn't get their kids not to put things in their mouths all the time or going back to things repeatedly after they'd been told no. With mine, if there was a logical reason -- we did have to tell her the reasons and she had to understand the logic - then she was easily compliant. Now, on the other hand, if some unsuspecting adult wanted her to do something and wouldn't explain or lied or tried to fudge around some non-logical thing, then watch out! All still true of her (though her investigation of the logic behind things has become exhaustingly more thorough with age, and she has ceased to argue directly with most people).

and: I would take the stuff about wanting to die seriously. You can't do otherwise. However, one of mine did this for a while and I don't really think he wanted to die. I think he figured out that saying that got a charged response out of us.

finally, I sympathize with your plight in getting people to see the problem correctly. Mine is 15 and I finally have someone's attention. I think the classic picture people have of AS is a fairly severely impaired boy. If that's not what you have, they have trouble seeing it. And the signs can really be more subtle than people - even doctors, who may not have much specific experience - imagine.

good luck. and keep posting. I am starved for information about girls on the spectrum.
Petrel
PS: my second child put stuff in his mouth constantly and could not be convinced to stop for anything.. it was quite the learning experience for me after number 1.

I just wanted to say Welcome to WP. I have a 5 yr old boy on the spectrum, so I can't give you much advice, but there are others here with daughters. Hopefully, you will get some help soon. I can't believe you have had so much trouble getting an evaluation!! Good luck and hang in there.

Thanks Petrel and Angelbear.

We never baby proofed our home until our second child was born. What a difference there is between them.
Our son was a lot more work as a baby but at nearly four he is much more compliant a lot of the time than she is.
I have to admit to many, many 'bad mommy' moments. I think that for much of my poor daughter's life, I have made things much worse. The whole action + reaction thing. I react in a way that tends to make things much worse.

My husband's cousin told me this past spring about her daughter's AS and that was the first time I looked at the signs and symptoms. At that time, I said to her that it didn't seem to fit my daughter at all. I had originally asked her about the social issues as I knew that her daughter had some too. A few months ago for some unknown reason, even to me, I started reading a lot about the Autism Spectrum and Aspergers in particular. At some point, I realized that it was quite likely that this was it!! I have been trying to implement some of the tools and such and things have gotten somewhat better already. This was just before school started and waited through the 'observation' of the OT and then went to her ped. and here we are. I have been taking her to this ped since she was four months old and I am a bit irritated that she seems to think that we are bad parents and our children are spoiled and in her words 'strong - willed' I am going to sound really like a not very nice person for a second but if we do get a dx of ASD - I will love going back to her and silently gloating. I was very unhappy when I left that appointment. I was happy that she gave me the info on the center where we are taking her but geesh give me the benefit of knowing my child.

I am sorry if at times, my posts seem like I am venting. I have been very frustrated for years and some of that is because everything I wanted to say, I didn't because I felt that it would make me look like a bad parent.

Thanks very much for your support. I really appreciate it and it is very much needed.

Don't apologize for venting. You SHOULD vent. You've kept it pretty cool, in my opinion, considering all you've gone through and how many irresponsible professionals you've encountered.

My son presents differently than your daughter, but there is still much I relate to. He was one of those extremely difficult babies; incredibly engaging, and incredibly challenging. To me, ASD is less a condition about specific traits, than a condition of extremes: what our kids are good at, they tend to be really good at. What they are bad at, they tend to be really bad at. You can't take any set of traits and consider them reason to believe there is nothing to worry about, because then there is that other set of traits ...

A few things you wrote that I most definitely can relate to:

quite delayed in fine motor skills
told me it was my fault / I felt that it would make me look like a bad parent
I have been very frustrated for years
I know something changed in the year she was three - that is when it all started

I will note that when I copied the last it brought out some mixed feelings, because I think both you and I can both look backwards and say our babies were definitely not "average" as infants, so in many ways the signs were always there. But around 3 is also the age were some traits seem to "trip" and there are definitely some things in the child that change, and sometimes others that seem to freeze in time when they weren't supposed to.

So many of us here have gotten the bad mommy looks or outright statements it is amazing, actually, that we've kept getting back in the saddle and trying again. My nemesis was my son's preschool director. Unfortunately, she probably stills smugly thinks she "helped" us by pointing out issues. Well, she had it all about as wrong as she could have, and I've since met other special needs families who despise that woman. But I don't think any of us have had the guts to walk back in there and tell her, and I actually feel guilty about that, but I still can't envision a way to effectively convey the right information to her and actually have her absorb it.

Fine motor skills are still a major issue with my son, and they are what eventually drove the IEP process for us. He wasn't learning to write, and he was building some interesting self-defense mechanisms and avoidance techniques because of it. It seems he does have a co-morbid, loose joints and dis-graphia, but without the ASD diagnosis it the school (at the time, at least) couldn't really do anything about it. Thankfully, I have a responsive school, and they agreed to go on what they thought was a wild goose chase to find something that would allow them to check a box qualifying my son for services. That was the first time anyone mentioned ASD in connection with my son, and almost as soon as I started my research, I knew it fit. And, actually, so did they. I have to give a lot of credit to the school principal, because she was the first one to suggest it, and almost everyone initially thought she was kind of pulling that out of left field.

Fortunately for me, it was a relatively short journey from someone first considering ASD to our actually getting services. I say relatively for a reason, of course Still, what you are going through ... I've heard that so much on these boards. It's like professionals think we WANT to label our kids with a difficult condition. No, we don't, but we do need an answer for what we see plainly: a child filled with gifts who is failing to thrive in this world.

I wish you the best of luck in getting the things you need for your daughter in place. It made a world of difference to my son's life once I knew he was ASD, and once the school knew he was ASD. He was no longer "lazy" for failing to produce his school work; he was no longer "being difficult" when he got upset over something that seemed minor to everyone, and so on. An ounce of understanding changes everything, and it is that ounce of understanding your daughter is in desperate need of.

Thanks DW. Since she is not a behavioral problem at school and 'appears' to be functioning normally, they felt that she has no need of services. I have a feeling that it will all change when we get a report in January.
I have considered setting a meeting with the superintendent of the Intermediate School District {we sit on the Great Start Collaborative Board together} however, I think that I will wait until we are through this part of the process to do it.

I find it unacceptable when a parent calls and asks for help understanding a report and they never call you back and for an OT to show up at my daughter's school and not even know who she was supposed to be observing. My daughter's teacher is the one who told me about that. I feel he needs to know. But that will come.

I hope that things go well for you and your daughter.

Welcome to WrongPlanet.

A couple of bits of advice:
Request everything to the district in writing, copying at least three people (teacher, principal and director of special education).
Asperger's in girls presents quite differently in girls - my own daughter was recently diagnosed, but not before we had a PRIVATE neuropsych eval done outside of the district. To the district, because she has outbursts, she is emotionally impaired. Our daughter is 8 and in the 3rd grade, and we are just now beginning to understand what her issues really are - partly because we looked to the district as "experts" in assessing for issues (which may or may not be the case).
We are currently going through a complete re-eval, in light of results of the testing that we had done this summer, which indicated that DD has Asperger's (and an Anxiety disorder, and a mood disorder, ADHD and dysgraphia). In my experience, you really need to push on the local districts to get them to do what they are supposed to do.
Hoping that the evaluations go well and they figure out what is going on with your daughter - it has been a long battle for us, which has included hiring an advocate to help us navigate everything, and insure that they are assessing everything that needs to be assessed. Good Luck.