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Old 06-11-2011, 09:35 AM   #1
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Seeking thoughts about my daughter

Hi. I posted this on the "Austim Spectrum" Board, but did not get much response. I am, as most of us are, desperate for some thoughts and feedback. Thanks for reading...

"I don't really know where else to go -- but I'm here because there is no stone I will leave unturned to try to help my daughter... and I've hit brick walls at every turn. The medical community I'm in has been no help, and dismiss me as an overprotective mother, or crazy, or worse.

I have known for years that something is "off" with my daughter, who is now eight. When she was four we discussed Aspergers syndrome, but it was eventually dismissed because of one positive interaction with a boy with whom she tossed a ball back and forth. She tests within normal range for all developmental issues, except walking and talking. The late walking was attributed to her arthritis. The late talking was never really dealt with, as she eventually "caught up". During this time, she was eating sand. After a blood test, we discovered that her iron was low, and so all odd behavior was attributed to that. Iron supplements ended the sand eating, and everyone moved on -- but me.

She also exhibited peculiar behavior as a baby and toddler. She avoided social interaction, would leave the room often to be by herself. She identified everything through shapes -- it was hard for her to see past the shaped (doors were rectangles... windows were squares, cheerios were circles), etc. She would also become obsessed with certain topics. She lined up her toys instead of playing with them. She has always (and still does) think literally. When driving home, if for some reason I took a different way she had trouble coping and exhibited lots of crying and screaming. She has always, and still does walk on her toes. Expressions and sarcasm are things she has to work to understand. She knew all her numbers and colors by 18 months, and could recite books. She is generally the last person to line up in her classroom, as she is often in her own world.

The school system, as I'm learning, does not pay attention to children who are not disruptive. If she was causing problems, I would be sure to hear about it. But since she is quiet and happy and makes good grades, she isn't on anyone's radar. She reads on a 4th grade level She makes good grades, honor and banner roll all year, and enjoys school academically.

Now, at eight years old, she has very peculiar social behavior. It is hard for her to have friends because she does not interact "properly". She has no social boundaries, and is socially unaware and awkward. She is often made fun of, and left out. This breaks my heart in ways that I believe only a parent can understand. For years, I have gone through spells of thinking she's making progress, thinking she'll grow out of it, ignoring it, or trying to find out what's going on. The more children I had -- and the more they grow, the more I realize that Jordan's behavior was definitely abnormal. Since she was my first child, I just thought she was quirky and cute and brilliant, not that there was a potential problem.

She is a happy girl, but I feel like I'm watching a peaceful train that will eventually crash. One day, she will realize that she does not fit in. One day, she will catch on. I can't bear the thought of that. If there is something I could do to help her, I have to find it. If there is nothing, I need to know that too. Not sure if that makes sense. I think of little else these days. I've prayed and prayed that if this does not matter, that God help me to let it go, but my concern continues to grow.

So.... I've read and read and read everything I can get my hands on. I was thinking PDD-NOS or slight Aspergers. I'm running out of answers, questions, and I fear, time. I just started her on a gluten free diet to see if that lifts the "fog" she seems to live in. We're only on day five though.

It's so subtle... it's easy to dismiss. As her mother, I see it clearly. Does this sound like anything any of you have seen before? Thanks in advance for any thoughts.... "

 
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Old 06-13-2011, 08:13 PM   #2
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Re: Seeking thoughts about my daughter

The biggest thing that I can reccomend is that your little girl see a specialist. Someone who is qualified to make a confirmed diagnoses. My son was re diagnosed at age 15 as having autism. We had sevices from our local REgional Center, and the case manager set up a evaluation . He was seen by a child neuropsycholigist, and this DR. did numerous tests. I talked to the Dr. first , then the Dr. evaluated my son. It took some time. After the Dr. was through with the evaluation he talked to me again , stating that my son had autism , and cognitive delays. I already knew he had autism and heard that he had delays too. I was sent in the mail a large packet from the Dr. It was very detailed.
My son was 4 yrs old the first time he was evaluated, and was always in special day classrooms. He did start talking in sentences after age 5. And is verbal. That is why I say he is high functioning. Since he had the language delays he did not meet the Asperger's diagnoses and also the delays in cognitive functioning.
It is important to have your child see a specialist to obtain the right diagnoses so the school will offer services to your child. Just because she is high dunctioning does not mean that she does not need any help. I do know that before services are offered the child has to have a confirmed diagnoses.

 
Old 06-14-2011, 02:01 AM   #3
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Re: Seeking thoughts about my daughter

sounds like autism spectrum disorder...that can exhibit a wide and varios range of symptoms, esp not interpreting social boundaries, and not interacting with people and objects in a normal fashion. take her to see a psychologist for a diagnosis.

 
Old 06-15-2011, 01:31 PM   #4
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Re: Seeking thoughts about my daughter

My 8 year old boy has Asperger's and my 5 year old has PDD-NOS.

Much of what you describe sounds consistent with a ASD issue, likely Asperger's.

When my oldest boy was having huge problems in Kindergarten, and we began to suspect Asperger's (it runs in my wife's family), we made the decision to homeschool both children. I gave up a career in Academia in order to earn more money so my family could do this: best decision I ever made.

We use Applied Behavioral Analysis and an intense, yet flexible, homeschool curriculum. Lots of self-directed learning and emphasis on social skills. We meet with other families with children during the day so the kids get socialized. After struggling in kindergarten, my oldest now excels academically, and he loves to learn new things. He reads at a high school level, and his math is a couple grades ahead as well. He has improved greatly in the social area as well, although we still have work to do.

It is my firm belief that kids with Asperger's cannot be altered in such a way as to fit the school system: the education needs to be adapted to fit them. My kids do not look at school as "work" or a "chore"--they love it.

 
Old 06-19-2011, 06:34 AM   #5
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Re: Seeking thoughts about my daughter

Hi and you are awesome to suspect something is up. Always listen to your inner voice because most of the time you will find it to be correct.

My daughter was recently diagnosed with aspergers. I suspected for years but sadly the public school said ADHD. She rocked a lot as a baby to sooth herself to sleep and she had many eating preferences (very picky eater) and texture/clothes preferences. Socially she is off in a whacky kind of way - she has friends but not close friendships and cycles through friends when they tell her things she does not want to hear...lol. Because of her ability to hold a friendship the school said she was not on the PDD. Funny, Aspergers runs in my family - both my mom and my dad had aspergers and I have aspergers.

I had to take my daughter to a neuropsychologist to get a diagnosis. The psychologists were focusing more on the anxiety and less on the social issues. The neuropsych caught this right away...

You may also find that food causes the weird behaviors to be heightened - I had to watch my daughter's milk and wheat intake. When I reduced her milk and wheat, it seemed she did better in school.

 
Old 07-12-2011, 02:02 PM   #6
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Re: Seeking thoughts about my daughter

I feel your frustrations. My daughter has always been what I called a difficult, intense child with a strong personality. This started when she was a baby. She never slept well, seemed to always want to nurse. Needed to be constantly held, though didn't like swaddling. After 45 minutes of being in a store would start screaming. Nothing soothed her. She specially disliked being in target. I could get 10 minutes into the store before she started getting upset. She started screaming after fifteen minutes in the car as well. Only comforted by me, if that could even be done. When she was six months I noticed she wouldn't make eye contact with strangers but would with us. Her pediatrician said it was just her personality. By 18 months she started soothing by pinching my elbow constantly. My elbows would be raw. She still will do this in certain social situations. By three, she would completely undress; have major tantrums, biting hitting, etc. She even got very upset if I went a different way when we left the house. She liked to line up her toys all the time. We took her to a behavioral specialist at 4 who told us she was non compliant and high anxiety. So we started behavioral management therapy. That didn't seem to work.
We relocated to Florida when she was 4 1/2.We noticed her doing a lot of hand wringing and tippy toing.We were staying with family so she didn't talk much, outside of her immediate family. She has always disliked hugging, kisses and preferred extremely hot water temps.I have no idea if any of this is beneficial to you but it's my personal story.
We put her in prek and they said she was a wonderful student. Always followed instructions, quite and shy. They did not see the daughter that we did. It always felt like we were walking on eggshells around her. Anything could set her off. She'd have meltdowns in the middle of aisles. If she was hungry that would trigger her.
By kindergarten, when I picked her up she would have immediate meltdowns in the car, everyday. Things were not getting any better. Changes in routine would set her off. in social gatherings, she would turn inside herself. Her own bday parties were uncomfortable for her. The only thing her teacher noticed was a lack of participation in class. She was also bullied by another student, which I reported. The teacher suggested self esteem class with the guidance counselor, which my daughter completed. At this age she would only eat about ten different food items and drink water most of time. She used to say the cold water helped her calm down.
I finally took her to a psychologist at 6 because we couldn't figure out what was going on. She did a couple of diagnostic questionnaires and came back that our daughter was on the autism spectrum. Possibly high functioning autism or aspergers.Also depression and/or anxiety. So we started reading up on it and scheduled a meeting with school behavioral specialist, psychologist, guidance counselor and teacher. I was not prepared to feel so humiliated by the school system. They saw no problem with my daughter. She was above level intelligence (school testes) and did well academically. No class disruptions so they saw no need for intervention services, IEPís etc.I left there crying and frustrated.

With help from her psychologist we have worked on some of our behavioral issues and discussed further intervention services. I'm having a hard time with insurance and finding places that will see her for further assessments. I want a concrete medical diagnosis on paper so that I'm prepared to enter the next school year and fight for services. We have also taken her to a psychiatrist for the mood disorders. He has prescribed Celexa. At this point she's only taken a week of it so we don't know the effectiveness. He thinks we should wait or school to do the formal assessment/diagnosis.
I can totally relate to your story. I'm desperately looking for help as well. Or at least knowledge that other parents are in similar situations. Please feel free to contact me. I am not familiar with board etiquette, for this is my first post.

 
Old 08-22-2011, 04:05 PM   #7
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Re: Seeking thoughts about my daughter

The only thing I can offer that others haven't is that happy childhoods often provide a resilience that others whom were not loved as children will never have.

 
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