Need help with daughter (really long sorry)

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I am really concerned with my daughter. She is eight years old. I can see symptoms of Aspergers in her. I took her to her doctor and they want her to have an Psysical occpational evaluation and a psychoeducational evaluation. She shows signs of motor delays. She has problems with simple things such as tieing shoes, zipping her coat, she is just learning to ride a bike and still a little shaky on it. It make me so nervouse to watch her ride. She has problems with things like washing her hair and other personal hygine things. She is very attached to me and going to school is a struggle. She already has an IEP in place for speech.

She also arm flapps all the time. She has been doing this since she was a baby. I just thought is was something kids do. I thought she would outgrow it. Other kids describe her as weird. They have told me this.

She also is getting so axious in school that she is starting to have accidents. The axciety is starting to affect her grades. She is unable to finish her work in time in the classroom. She has an appointment tomorrow to make sure it is not an urinary tract infection. I also am going in the morning to meet with her counselar in school tomorrow.

She also has an obbsesion with animals. She talks about them all the time. She is saving her money to buy a farm and i believe that she will acually accoplish this. She saved for her own kitten and was able to pay for all the vet care bills when we got him. She carries him about and pretty much treats him like her kid. She has some friends but not anyone too close. She tends to push them away. She tells me she plays tag at school with some other kids and she is always it.

I spent 3 days on a camping trip with kids from her school. The group i had where all students in her class. I was watching them interact and you can really see the differnce in the maturaty level. She seems about 2 years younger socially and pysically to these other kids. I had about 9 kids to compare her to in my group.

There are a lot other things that she knows that just seem impossiple for a kid her age. The other day she wrote a report on the 10th planet just for fun. I was really impressed with it.

I am hoping they will do the psychoeducational evaluation. They seemed really reluctant because she is not a behavial problem and her grades are ok. I think they could be a lot better.

There is more i can say but i do not want to make this too long. Can anyone give me any pointers? I am just at a loss right now.

Thanks,
Anna

Hi Anna,
My son has not been diagnosed with AS yet, he is only 29 months, but I just wanted to mention something about your daughter's problems with tying shoes, etc.

My son has been diagnosed with hypotonia by a neurologist, and they say that he will have the same problems- tying shoes, handwriting, using utensils to eat, buttoning when he is older. It is also called floppy baby syndrome, because they are very loose and floppy, sometimes super flexible, with very low muscle tone. You might look it up and see if your daughter kind of fit the description when she was a baby. Also check to see if she can bend her thumb back to her wrist, or hyper-extend her knees forward more than other kids. That is how the dr tested our son.

My son hit his physical milestones on the late end of normal- he walked at 17 mos, etc. But he didn't start running until he was 27 months, still very floppy and babylike, and he still is nowhere near jumping, throwing a ball, etc. Because his head size jumped off the charts at 6 months, the neurologist suspects a condition called hydrocephalus, but we still haven't had him tested for it. I guess it is also associated with AS and other things on the autistic spectrum, although the opposite problem can also occur, where they are very unflexible and stiff. Because it causes pressure on the brain in different areas for different kids.

Anyway, there are many, many other problems associated with hypotonia besides hydrocepalus, but I just wanted to mention it in case it gives you another clue. Plus you mentioned that she already has an IEP for speech, which is also a symptom of hydrocephalus. But do check out the hypotonia and see.

My husband and I both have a LOT of AS qualities, but neither one of us has taken the time to get an official dx yet. He was dx'd with ADD, but he doesn't fit that description at all. Anyway, we also figured out that he also has hypotonia through dealing with it with our son.
HTH
Sally

hang in there....my son wasn't diagnosed until age 13. he lags behind others by about 2 years socially~he still prefers to play with kids who are younger than him by 4 or 5 years . he does, however, have a very good friend that he's had since kindergarten~and a girlfriend too.

I was just telling my husband, we have the same problems with our girls - i.e. our girls get such good grades (dist. honor roll and honor roll) that no one sees the other issues they have. It's SO frustrating, isn't it?? One of the teachers told me I was just TOO involved and THAT was our problem.

Yeah, right.

My best advice? Keep fighting. I knew my oldest had a problem at 4. She was just diagnosed AS last week - at 7. So it was constant battling with doctors, etc to get the best for her (and now, her sister) but at least we have an answer now.

Good luck!

My 9-y-o spent a year in sweatpants around age 5 because he couldn't snap or button jeans.

He still has incredibly bad handwriting - it's almost painful for him to try and form letters and numbers (which also impacts math). He never really did do any coloring and this is still an issue.

I pray one day he will be able to eat without wearing most of his food - while in public school this year he asked me to stop sending a chocolate cookie with his lunch since the other kids teased him about the mess he made.

Personal hygiene is still touchy around here - luckily he's affectionate so we can sort of convince him to brush his teeth if he wants hugs and kisses. We're still trying to find a way to get him to wash his face.

As far as playing tag - is she really playing with the other kids? Our son was engaging in a lot of parallel play. He thought they were playing a game, but they were playing their own game.

With school being a struggle, I think you've called it with the accidents. My son's school had him totally messed up. His anxiety was off the charts, depression was part of his existence. By middle of 4th grade at this school, he was just a mess.

Even though you don't have any official diagnosis yet, you may want to start researching Asperger's and take that information to school meetings. Sadly, our local school figured we were clueless and basically tormented our son with their opinion of what was best for him.

We printed lots of information from here: http://www.maapservices.org/ They ignored it, but it helped us.

Sounds a lot more like aspergers to me.

http://www.aspires-relationships.com/as ... by_age.htm

It took me a long time to learn to tie my shoelaces. I can remember kindy teachers persecuting me for it. It also took me a long time to learn to ride bicycle and to be toilet trained (I was scared of falling down the hole).

As for the accidents - this is embarrasing but I had them too. Part of the problem was my pelvic floor muscles were not strong enough. I stopped having accidents when I learnt exercises to strengthen them. I made it an absolute rule not to pee in the pool or the shower or the sea. It might seem ok then but it just means your muscles aren't as strong as they need to be when you laugh or sneeze or get scared or anxious.

The easiest way to teach a girl which muscles are her pelvic floor ones, is to get her to practice stopping and starting peeing. Doesn't matter if the stop and starts aren't always perfect. The practice itself helps strengthen everything.

In the mean time maybe she could wear a pad or take a spare pair of undies to school just in case. This should reduce the anxiety a little too and help hide problems from other kids who will be mean about it. And stay away from drinks with caffiene in, like chocolate drinks or colas.

I still have problems today - if I don't know where a clean toilet is I get anxious about it and that anxiety gives me the urge. I hate concerts and things like that where there are never enough toilets.

I hope that helps you.

Those kinds of accidents! My husband had the really bad ones, not #1, through elementary school. Sorry if TMI, but I think it does go along with the hypotonia, because he has it too.

Thanks everyone for all the replies and advice. I did talk to the school and talked about some of the problems we are having. At the end pf the conversation the school psychologist did bring up Aspergers. During the conversation I said nothing about it. I wanted to see what they where thinking first. She said that that might be it. I know they are not qualified to make the diagnosis. The said that they would do the psycoeducational test but they would not be able to do it till next year.

Over the last few days I have called so many people to see if they are able to do the test. I did find a few places and some of the prices are insane. I finally did find a place that will do it for 600.00 dollars. They take half now and will work with me for the rest. They seemed really interested in working with her and called me 2 times that day to ask more questions. They said they would be able to give my daughter the test within 3 weeks. I am still having trouble with finding someone to do a physical and occupational evaluation. This is crazy. I thought doctors where here to help. Also some of the places told me they have waiting lists for over a year. How can these children be helped if there is no one available?

Another thing also happened. We went to a camp for 3 days with my daughters school. They where required to write thank you notes to the parent helpers and camp staff. There was one person she really just not seems to like. Her letter to her goes
something like this:
Dear Miss (name removed),
Thank you for coming to camp and for just being there. Here is something thing I enjoyed doing with you and it is you not yelling and you not talking to me. Also you minding your own. (I assumed she means minding our own business.) Then is goes on to her favorite things she did at camp. It ends with her saying thank you again for coming to camp. I made her so it again.

This just got me. If she does has Aspergers then I can understand her just not understanding that what she wrote might hurt someone else feelings. I did ask her about how she feels when someone says something mean to her and she said she really does not care because she is right and they are wrong. She thinks she knows everything. She also always scores really high in the statewide tests. Always at the top.

One other thing I should mention is that she changed school in Jan. It was just too long of a commute and no matter haw early we left we there always late. This school is located only around the corner so I thought it would make better sense for her to go there. At her other school she had 2 very close friends that seemed to have very similar interests as my daughter. They where both lovers of animals. That is my daughters passion. She has never played with dolls just her and her animals. Real ones and stuffed and she also collects the littlest pet shop things. Her other school did notice the speech problems and the fact that she was immature for her age but just assured me she would grow out of it in time. Still has not happened just. She also is not making any close friends in this new school. She seems to be just hanging in the background.

Another thing about the accidents she is having is that she really does not seem to notice or care. It is always someone else who notices first. When I ask her I get answers like I don't care. I would think that it would be uncomfortable and embarrassing walking around in wet clothes. The doctor said it is not a urinary tract infection but they are sending to the lab to double check.

Also about the anxiety I was informed that she is so scared to make a mistake that she takes so long to finish her work and that this gets her very upset.

This is the last thing, I promise. She also has a tendecy to totally ignore people she has no interest in. If they talk to her she just turns her head away and says nothing to them. Many of my family members and friends have let me know that their feelings her hurt because of this. It just seems like she can really click with some people and others nothing.

I am so confused about all this. That is it for now. There is more but I know this is already too long.

Thanks again for all the replies,
Anna

Hi..perhaps I can give you some help. I am a parent of a 20 year with Asp. and also a special education teacher. There are clear federal laws that your school district must follow...one is to evaluate when a disability is questioned. They do not want to pay for an evaluation over the summer, but they can not tell you they can't evaluate your child now. What state do your live in? Through the Dept of Education you can reach the special education department and find out your rights. Asp. is a medical diagnosis and you would probably want a neurologist to evaluate your child also. Do you have health insurance? In addition, you would want the school system to have their occupational therapist do a sensory profile. Sensory integration is an issue that can significantly impact a child with AS behavior. In addition, I would want a social/emotional evaluation to gather information regarding your child's peer relationships, anxiety level, possible depression. My experience is that you have to push the system. They may tell you that if your child is on grade level they don't have to do anything, but this is where your state dept of special education can help. The Individuals with Disability Act (federal law) requires schools to look at a students academic, social and emotional wellbeing. Also, dept of education or the special education office in your school district should be able to give your phone numbers for parent support through the special education process. My daughter was diagnoses with many mental health issues prior to As diagnosis at age 20. So, many people are not aware of the needs, profile and co-morbid mental health issues. Write back,

I just replied and then reread your last reply. Honest responses to people are typical for AS. My daughter is involved with an AS specialist and the mental health system. I have learned so very much from the As specialist. Several great books: one being: "A guide to Asperger Syndrome", by C. Giillberg (2002), Cambridge University Press. or anything by Tony Atwood. I purchased 1st book used through Amazon. Anxiety and depression really became apparent for my daughter at age 11 or so....keep pushing for your daughter! It's critical.

I took my daughter today to what I thought was an occupational evaluation. It seemed to me to be more of a physical. They had her catch a ball, balance and do a few more physical things. She had to put pegs in this thing and then take them out. The only issue they did see was that her balance was a little off but they said that it was normal. I do not think they did any sensory things. She did interact well with the people doing the exam. She did growl at them a few times. That is something she does sometimes. They thought it was funny.

I plan on calling the school tomorrow to see if they are doing anything. I sent them a letter. I have asked my daughter if the counselor on anyone has asked her any questions and she said no. I am still going to have the test done myself at the end of the month and also make them do one too.

I am also going to take her to her first horseback riding lesson. This has been something she has wanted for a long time but because of how long it would take to get there I have put it off. It is going to take us two hours to get there. I do not know how to drive yet but I am studying the book and plan on taking the test soon. It will be worth the two hour bus ride just to see her so happy. She gets so excited when she see's a horse. We get horse magazines and books every month. She knows they come every month so from the 1st day she asks if they are here yet.

Also to blue, I do have medical insurance and we are in pa. Thanks for your response.

As a parent of a young adult with Asp and a special education teacher, it is imperative that your daughter's school system evaluate her now. Good grades and no behavior problems does not allow a school system not to evaluate. If your daughter is functioning socially and emotionally below her age level, she should be evaluated and the school system as a responsibility to do that. My experience is that they will say, but she's on grade level. The Individual with Disabilities Act looks at more than grades. The reason I am pushing this is, in my personal and professional experience, most likely your daughter's problems will increase. Depression and anxiety can be major issues and school can be very difficult for those with Asp. You may also need possibly a neurologist and/or child psychiastrist to diagnosis this. Please push forward for the sake of your daughter. My best

Hi,
Thanks for your response. I keep trying to talk to the school and really am not getting any response. I called on Friday and the school pycologist said she will call me back by 1:00pm but have never heard back from her. My daughter is going to be taking a psycoeducational test at the end of the month that I will be paying for out of pocket. Will that test tell me everything that i need to know? As far a dianosis and what the best ways to help her are. Should i be going to others also. I already tried the occupational therapy thing and I think it was the wrong type. It was more for people with injuries. So confused. Please let me know what you think.

Hi again,
It is really difficult to make the connections to have the proper evaluations done. I know in Mass. McLane's Hospital specializes in Aspergers. I have emailed professionals there for names of professionals in my area to help me. Perhaps you might try that. I did this through the internet. Large medical centers can be helpful. You just need to make sure they specialize or are very familar with asp. It sounds as if maybe you saw a physical therapist rather than an occupational therapist. What you need is called a sensory profile. write back.