In Denial or On The Right Track??? VERY LONG! sorry!
Moms View Message Board: Parenting Children with Special Needs: In Denial or On The Right Track??? VERY LONG! sorry!
I have read over almost every post in the category trying to figure out if what I¡¦m doing is over-reacting or am I in denial or should I be fighting this much.
In a previous post, I told you all that the schools had said DD was "probably PDD-NOS". She had a speech eval, met with an occupational therapist for an eval, and met with a neuro-psych, for what I was told was a "full neuro-psych workup". This "full" work-up was a neuro-psychologist talking with her and doing a couple of test for less than 45 minutes. From everything I've read, a full neuro-psych exam is six to eight hours!? He never said PDD-NOS, he said she was "quirky and had Asperger-like conditions". It was agreed by all that DD would remain in the pre-school she was in and would receive bi-weekly speech therapy in the school system.
When September came, we asked for an updated IEP, and, as her speech therapist had suggested, transitional kindergarten. After her screening with the kindergarten teacher, they said, since she had done so well in pre-school, we should try her in regular kindergarten and "see". We had a meeting in November, two full months into the school year, to review her progress. The school psychologist kept saying "yeah, definitely PDD-NOS" or "yes, that's consistent with her PDD-NOS". Since there has never been a formal "diagnosis", I was a bit put off by this. But, since we had yet to speak to her pediatrician about the whole thing, I voiced my opinion to her, but didn¡¦t make a big deal about it. Her teacher did say she was doing well, though not picking things up as quickly as the others. (Last year in pre-school, she REFUSED to even try to do her letters, or numbers, or draw shapes, unless they were dotted out for her. Now, she is doing the whole alphabet, writes her name, writes her numbers on a grid from 1-60, and is working on sight words, which are proving to be a challenge.) But, since she was so well-behaved, had adjusted well to the class and teacher and was making friends, they agreed to keep her in the class and revisit the issue in April. They are also providing her with twice weekly speech and OT.
The day before December break, I got a letter both in the mail and in her backpack telling me a special meeting has been called for Jan 22nd, because she's "not accessing the curriculum". OK! I went and spoke with the teacher. I thought she had been doing well, though slowly. I know she was having trouble learning her sight words, but we've been working on that at home and she seems to be catching on. The teacher said that, since the curriculum in getting more difficult and she's so much behind, she's getting bored, so she gets up from her chair and goes to look out the window! OK! I talked to her about not leaving her seat, which I made them move from the furthest seat in the back to the front of the room. I asked what they were working on that she wasn't grasping. PLANE GEOMETRY, SOLID GEOMETRY AND SYMMETRY!!!! WHAT? She's five! Is it me or is this a bit much? (By the way, she's the youngest in her class by four whole months!!!!)
OK! Now, here's where I get crazy (and this may be premature, since we are meeting with her pediatrician the same week as the school meeting, but I like to have all my information ready!  ) From everything I have read on autism, asperger's and PDD-NOS, I cannot put my DD in any of those categories. There could be one or two things she does that could match a behavior of these conditions, but, in my opinion, all children could display these things. There was a site posted here awhile back for Childbrain, which had a PDD assessment scale and questionnaire. I did it yesterday. You have to score between 50-100 for mild PDD. DD scored 38, and there were a couple of things that I was overly pessimistic about, like, don't all kids mimic commercials? I used to! I used to do whole toothpaste commercials in the bathroom when I was a kid!!! Don't all kids want to watch the same movie every night for a week when they first get it, or they go on kicks where every single night they want the same movie for a week, and then move on to another one? My daughter just got Cinderella a week ago. She's watched it every night. Is this considered Mild, Moderate or Severe on a test or is it nothing? Am I somewhat correct in believing that "most" or "a lot" of PDD-NOS children have behavioral issues? Like tantrums, obsessive-compulsive disorders, a need for rituals, or not liking being around a lot of people or loud noises!?
I guess I'm just looking for some guidance as to whether I'm so off-base in what I'm thinking. Can I be so strongly in denial that I just can't see it, or is what I'm seeing somewhat correct? I know every child is different, and there are so many degrees to these things, but, here is the main question... What is the difference between a child on the spectrum and a child who has a learning disability? Or, are they one in the same?
I'm so sorry for the length of this! I suffer from written diarrhea!!!! And I don't want to offend anyone with the ignorance of any of my questions. If my DD is truly PDD-NOS or autistic, then, we'll deal with it and get her exactly what she needs. But, what if they are being too quick to label?
TIA for any guidance anyone can give me.
Where the heck does your dd go to school? Harvard Kindergarten??? I can't believe they're pushing geometry on kindergartners! Insane. *insert eye roll here*
There are so many things that *could* be wrong with your dd. BUT, there are so many things that *couldn't*, too! If you truly don't think she has autism or PDD or any of those after doing your own research, she probably doesn't. I've had several people tell me they think Robin has Aspergers Syndrome. Okay. So what? I've found with special kids labels aren't nearly as important as treatment. You try different things until you find something that works.
Honestly, I'd wait and see what happens at the eval. I really wouldn't let the school diagnose her. That really ticks me off when schools do that. They're not in any way qualified to! Do they have PhD's behind their names? Okay, some may, but in what area? You can keep researching and probably find a dozen things that *could* be the problem, but so many different diagnosis' are so generalized that half the kids tested would come up with *something* wrong with them. Try not to stress yourself out and let the doctors do their jobs. Hugs and keep us updated.
I already gave you an idea of what the kindergartens in this area expect in the post on the General Board. Here I'll just give you my opinion as the mom of a child with high-functioning autism. Many kids on the spectrum do things that other kids do like watch a new movie over and over but they take it to a different extreme. My two typical kids will watch a new movie three or four times the first week we have it and then they are done with it for a while. My ASD kid will watch it 3 times a day for three weeks and talk about it any chance he gets and when he watches it, he has to see it the exact same way each time. If we skipped the previews the first time watched, he'll never watch the previews and will leave the room until the movie starts or vice versa if he saw the previews the first time. My oldest child (typical) is shy and doesn't like crowds but she gets clingy and asks to go home. My ds used to get hyperactive or super-emotional and would cry and tantrum until we left the situation. He couldn't handle loud noises and would cover his ears for half an hour after hearing a jet go overhead or a crowd start yelling.
A LD is learning related only. ASD (PDD-NOS is a subset of autism spectrum disorder) is a developmental disorder and affects social interactions, speech, motor skills, learning issues or any combination of the above. How is your DD's eye contact? Can she have a lengthy conversation about many different topics, not just her current interests? Does she mimic you and her friends when she plays? Does she tell you "Madison always colors her princess pink so I'm going to, too." or something similar where you can tell that she has observed what her classmates are doing and wants to do the same and wants you to know why she's doing things that way?
I think this area of the country (California) is unusual in the fact that the school does an amazing job of assessing children and setting up resources to help make up any gaps in development but we've had great experiences with the school assessments. They do bring in PhDs to do the assessing and my child had a work-up with a psychologist, psychiatrist, speech pathologist, ABA therapist and occupational therapist, along with inviting his pediatrician to weigh in since she's known him since birth. I truly hope that you're able to have as good an experience as I've had. If you'd like to talk off the board, let me know and I'll email you. Good luck! {{{Angela}}}
Thanks Cori!
My son is very similar to Tink's. He is just on the edge of pdd. Mine doens't officially have the dx, but rather the school says pdd tendancies. His ped says, well yeah, he is probably on the spectrum, but copes so well that we just stay on top of things.
However, my son is quirky. I think one benefit that I have is I have two older children very close in age, so it is easy to compare his oddness. For example, my son loves blue jeans, when he was little 2 or 3, he would have a melt down, minor melt down, but simply wouldn't wear shorts or other types of pants. Now, he will simply just never wear anything else. Not even in our 100 degree summers. Now if I tell him, okay we are going to a wedding and I need to to wear nice pants, he will, but he will mention any opening that he can't wait to go put his blue jeans on.
My son seems to get stuck on things. Right now it is drawing and sculpting. So he draws a new character (today a bari-lion...a cross between a baricuda and a lion). On the play ground he has found a spot that has clay and he digs up a ball each day and make something. Neither of these habits are a big deal, and almost seem normal, but I can't toss these drawings or clay pieces without protest. My other children my try something out, but they aren't attached in the same way. However sometimes his "thing" can be more odd. He used to have to have us touch him all the time, rub his ears, scratch his head, etc.
The other thing that makes my son different is he has irrational fears. He is very worried about being lost in a store. So at the grocery store, he won't let go of the cart, when it came to time for him to not sit in a cart, that transistion was very hard. In Target, he will hold my hand the whole time. At age 10, if I force him to let go, he kind of whines about it, but mostly just talks about not getting left, watch for me mommy, etc. At age 5, he might of cried, but he never threw huge fits on a regular basis.
Mine just sees the world differently. We have accepted that one day he will do something great because he sees things others don't. But in the meantime we have to play the school game.
We have his ard meeting tomorrow. They struggle like we do, it is hard to really say okay this is the issue, so he will only have 3 iep goals for the year, but that is far from the complete picture of who he is.
oh and a learning disablity is different. Simply it is a matter of there being a big difference between IQ and achievement. Typically about 2 grades (technically it is two standard deviations of scores).
Really pdd is a matter of a social disablity, they just don't react with the world or their peers like a typically developing child.
I guess this is why I'm so confused. My DD has none of those issues. Her eye contact is great, except when you're yelling at her for something and then, like every kid in the world, she doesn't want to look at you! Eye contact is so good that she gets ticked off if you don't look at her when you're talking to her. She'll get your chin and move your face so you're looking at her! LOL She doesn't exhibit any irrational fears or get stuck on things. In the course of a day, she plays with a dozen things, depending on her mood. Sometimes she's all about dress-up and pretending to be a Princess and some times she wants to draw or play CandyLand. She's never been overly rigid in her routine or doing things. She's quite the social butterfly, sometimes too much. She has to talk to EVERYONE in the grocery store! Ask them what they're doing there, what's in their carriage, what is their name! She's a born performer! Loves to sing and dance and be the center of attention! She just recently had her first on stage performace with her class for a Winter presentation of singing Christmas carols!
But, she still repeats alot, especially if she doesn't know the answer to what you are asking her. Yesterday, the teacher said, "You are going to switch seats with Xiomara! Is that alright, Sue?" I don't think she knew what she meant, so she said "Seat? Xiomara?" And the teacher had to say, "you sit here, Xiomara will sit over there!"
If I push her too much with her homework, like with her sight words, she gets frustrated when she can't find the words and I'll see tears welling up in her eyes! She doesn't have trantrums, but you can see her starting to cry when she feels like she's not getting it. It broke my heart the other night, when I could see her eyes filling up because she couldn't figure out the word "Eight". She just looked at me with tears ready to spill and said "Mommy, I not stupid!" OK... that made me cry!
I don't know. I'm just at a loss for what to do with her and I'm so afraid that the school isn't going to give her what she needs because they can't figure it out either.
Oh Angela, you make me want to cry, too. If she's frustraited it's no good. Also if this is eating away at her self confidence it's not good either. No child should feel stupid.
Do short bursts with her, no more than three to five minutes several times a day. Even it it's one word seen several times a day in different settings. Have her trace the word, have her try and make it with playdough or magnetic letters.
What's wrong with repeating what she didn't understand? It's great that she's verbal and can communicate that she didn't understand.
Maybe the teacher is just not the right fit?
Good luck.
Ame
I feel your pain, the school isn't really good at figuring out what those atypical kids need. Atypical doesn't have to be special ed, just not what they expect.
What you need to do is keep encouraging her, remind her that you love her often and keep letting her know how special she is.
Another thing, I would reccomend you try to spend some time with other kids her age. Not at playdates, but watch at the playground, or at church, or even through the class. For me that is when i realized that although my son was not really behind, I could see where he was different. I think if you could do that it would help you in knowing whether to be concerned, or stick by your guns with she is fine, just young.
The only flags in your last post, really k students don't baby talk "i not", in stead of I am not. And yes my son knows eye contact is important and grabs my face, that is normal behavior for a 2-3 year old, but not a 5 year old.
A few thoughts from reading your posts. First of all, I'd ask her teacher and therapists what they see. They can't diagnose your DD, but they can give descriptions of how she interacts with peers, how flexible she is in class, and that sort of thing. I had a 3 y/o I was working with in therapy and he was a "quirky kid"--no biggie. However, after seeing him for a few months with NO progress I was concerned. I asked mom if I could observe him at preschool. Within 5 minutes I could tell that he was not just a quirky kid. He had some pretty significant issues going on. Had I not seen him with his peers I wouldn't have seen the full picture. Your DD's teachers and therapists are seeing her with her peers and may be able to provide additional insight for you.
I do see a few red flags from your second post. The fact that she'll grab your chin if you are not making eye contact is not age-appropriate behavior. At the very least, she should use words to convey this, but most kids would not be hyper-vigilant about constant eye contact. Also the talking to everyone in the grocery store thing. Many kids are very sociable with strangers---mine both were too, esp. my oldest. However at her age a little stranger anxiety should creep in (talking to everyone is more of a 2-3 y/o thing), plus being so bold as to ask what's in their cart---that's pretty personal and kind of invading privacy kind of questioning. Sure, the cart contents are in plain view, but if you are buying hemorrhoid cream or condoms you really don't want to discuss the contents of your cart. It seems kind of like she may not know appropriate social boundaries. Most people (thanks primarily to the media) think of kids on the spectrum as being aloof and totally unaffectionate and unsociable. While that is often the case, it is not always the case. I have worked with several kids with frank autism who have been very loving and affectionate. Also, like Kaye mentioned, the "I not" is immature grammar for her age.
I am not saying she is on the spectrum or isn't. I'm merely pointing out some potential red flags that I noticed from your post. I would certainly get more feedback from teachers and also do as Kaye suggested and observe her with her peers. I do question why she is in kindergarten given your concerns and her age. Personally, I probably would have kept her in preschool another year. However, maybe you are planning on 2 years of kdg? That's a personal preference and you know your DD best.
She sounds like she does have a lot going for her, including having a wonderful mom! I wouldn't worry too much about her being diagnosed or not as long as her individual needs are being addressed and met. I have a wonderful suggestion for help with sight words. Try Morphophonic Faces. The website is http://www.elementory.com. These cards contain all the Dolch sight words and put the words in visual/pictured form. It makes it much easier for kids to learn them. Hope this helps!
Pam, do you have the worksheets on your computer? I would love to have a copy of the b and d sheets for Kayla. She simply can't get these 2 straightened out. Maybe if I did this visual activity with her she'd remember. While I know this is very common for K, Kayla is 11.
Pam...that is exactly what they used with my son. It was a HUGE difference in how he was able to read. Literally when he started 3rd grade he was reading dr seuss books, dra level of about 12. By summer he was reading Harry Potter. He still has some fluency issues, but it was remarkable!
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