new to group... looking for information

May 12, 2010

Hi, I am new and am trying to find out more information on aspergers, and

thought there is no better place to get info than from parents who have

experience with it. Im not exactly sure where to start, my daughter has a long

medical history first off. She was a preemie twin at 29 weeks, had cancer at 2

months and underwent surgery and chemo for it and has since been in remission.

As an infant all of her delays were blamed on her being a preemie and having to

endure chemo so young. But now as she gets older there are so many more issues

she has that her twin doesnt that makes me wonder if she may have something else

going on, and have had several people with experience ask me if she had autism

or aspergers. She was delayed in all her milestones... crawled at 13 months,

walked at about 2 years with help from pt. She didnt do any fingerpointing until

age 3(she is now 4. Her speech was very delayed and did not speak first words

until age 2, but her doctors keep saying that was due to her having a hearing

loss from chemo but her hearing loss was not that significant according to the

audiologist. She has been diagnosed with a sensory processing disorder, and has

OT once every two weeks to work on her fine motor skills because she still has a

lot of issues with them. She has issues playing with her twin, will often just

start kicking or play rough and not realize it even when the other kid is

crying, has really bad tantrums that can last hours, has issues when we deviate

from out routine or have to navigate away from what we were doing (like one day

I forgot to tell her I had to stop at the post office before the store so she

had a meltdown because we had to go straight to the store). Does daily hand

flapping, hand wringing, spinning, or will pinch her hands when she seems to be

getting overstimulated with anything, walks on her toes a lot and has issues

with running.... sorry so long, but thats all I can think of right now. Mostly I

am just looking for advice, opinions, and what a good starting point would be

with all of this...thanks for reading

May 13, 2010

It seems like you have already had our daughter evaluated and she is getting some therapy now, that's a good start. She should probably go back to the doctor who gave her the sensory processing disorder diagnosis and discuss your other concerns. Some people have mentioned taking a video tape of some the of behaviors you see on a daily basis - the hand flapping, spinning, toe-walking etc. This way the doctor can see them even if it doesn't show up in the time you are in the office with your daughter. Getting an additional diagnosis can help your daughter get more services. So if I were you, that would be what I would do next.

Good luck. If you have more questions, there are very knowledgeable people on this list, who can help.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: speed_angel84 <speed_angel84@...>Subject: ( ) new to group... looking for information Date: Wednesday, May 12, 2010, 3:30 PM

Hi, I am new and am trying to find out more information on aspergers, and thought there is no better place to get info than from parents who have experience with it. Im not exactly sure where to start, my daughter has a long medical history first off. She was a preemie twin at 29 weeks, had cancer at 2 months and underwent surgery and chemo for it and has since been in remission. As an infant all of her delays were blamed on her being a preemie and having to endure chemo so young. But now as she gets older there are so many more issues she has that her twin doesnt that makes me wonder if she may have something else going on, and have had several people with experience ask me if she had autism or aspergers. She was delayed in all her milestones... crawled at 13 months, walked at about 2 years with help from pt. She didnt do any fingerpointing until age 3(she is now 4. Her speech was very delayed and did not speak first words until age 2, but her

doctors keep saying that was due to her having a hearing loss from chemo but her hearing loss was not that significant according to the audiologist. She has been diagnosed with a sensory processing disorder, and has OT once every two weeks to work on her fine motor skills because she still has a lot of issues with them. She has issues playing with her twin, will often just start kicking or play rough and not realize it even when the other kid is crying, has really bad tantrums that can last hours, has issues when we deviate from out routine or have to navigate away from what we were doing (like one day I forgot to tell her I had to stop at the post office before the store so she had a meltdown because we had to go straight to the store). Does daily hand flapping, hand wringing, spinning, or will pinch her hands when she seems to be getting overstimulated with anything, walks on her toes a lot and has issues with running.... sorry so long, but thats all

I can think of right now. Mostly I am just looking for advice, opinions, and what a good starting point would be with all of this...thanks for reading

May 13, 2010

Your little daughter has been through alot and so has your family.

Many kids with health issues have symptoms similiar to autism.

Take a look at this web site. It lists all the health issues

that have common autism type neurological issues (sometimes

called NLD but this is not a common term used much anymore).

http://www.nld-bprourke.ca/NLDAndNeurologicalDisease.html

I have noticed that in some books on autism it is being

recommended more and more to have a genetic test done when

there is autism or autism like issues. Has your daughter had

a chromosome study done? My daughter did at age 10 and it

explained a lot of issues. My daughter had many health issues

early I don't know why it was not recommended to do a genetic

test earlier. I don't think this is a standard practice yet.

Regardless, you want to figure out how to help your little

daughter cope better. I think I figured out on my own what

helped my daughter stay calmer. It was once she got to

preschool that I lost control and things went downhill. I would

focus on getting your daughter classified under a pervasive

developmental disorder, or a genetic disorder if it turns

out she has one that may explain the cancer and developmental

issues, or Asperger's. You really need the school to be ready

to support her.

The central problem with autism is that kids can't cope well

with things not being a certain way unless it has been rehearsed.

Coping with change is a critical life skill. My daughter is 12 I still have

things rehearsed with her and keep life predictable.

But finally we are able to talk about the outbursts and other ways to cope with

change.

My daughter's outbursts were really bad since she was 2 years old.

We spent so much money trying to learn different techniques.

Definately any kind of punishment is going to escalate the

problem. You have to just stay put and stay calm and wait for

the storm to pass without engaging too much. You don't want

to reinforce outbursts but they are hard to avoid. My daughter's

outbursts were greatly reduced at age 11 with the introduction of

zoloft. My daughter suffered so much with anxiety.

I thought of all the money we spent that taking Yale University's

Parent and Child Conduct Clinic training was very helpful

in shaping better behaviors. I got so much bad advice from

therapists. So much escalataion of problems. Yale's program

can be done over the phone.

These three things were the most important interventions,

Yale's parenting program to lower outbursts, medication for

anxiety eventually and special services in school.

best of luck,

Pam

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> Hi, I am new and am trying to find out more information on aspergers, and