Recent Posts
Topic: RE: Today really SUCKS!
Both of my sons have Aspergers. One is pretty high functioning, the other...well, maybe moderate at best. Looking back, I don't know how I got through it. They started off really as more classically autistic being called plain PDD (not even with an nos added), yet no one back then ever would say the dreaded "A" word. Son #1 was in services by the age of 10 months, son #2 by the age of 5 months, so in one sense the services we got them I feel "graduated" them from autism to Asperger dxes later on.
This was way back when (sons were born in 90 and 92. We didn't even know about stuff like ABA. We did OT, PT, social skills groups, sensory integration stuff, even chiropractic care, developmental preschool, plus both had very lare summer birthdays so they were 6 or close to 6 when they started K. They got on IEPs right away and continued services in school.
In Jan 1999 at the U in Seattle, we were one of the first families in a study with 2 or more kids with any form of autism. It was in this study that they said to me, oh by the way after all this testing (they tested both my husband and me as well), did you know *you* have Asperger Syndrome too? I am half considering doing one of the studies they have going right now for adults with AS that involves doing an MRI of the brain and facial recognition (an aside).
Btw, when my sons were little, we lived in Kent and their therapy was at the Children's Therapy Center there.
Topic: RE: A little Rant/Rave
Jenn,
I am a respite care provider for PDD children. I have worked in many classrooms over the years and all I wanted to say was..do what works for you and your child. I am not a big believer in ABA but for some kids it works well. HAve you ever heard of Developmental Therapy? Floortime is also a great example of what I find "works." Do you children use PECS to help them with their communication? I found that using the PECS program was really beneficial. I still use PECS a lot with the children I work for privately....as well as expectant waiting.
I admire you and your husband for all your strength and courage. Sounds like you are a very busy mom
Best of luck to you on your upcoming surgery!
It's ok to rant and rave from time to time- we all do it!
Take care,
Christine
Topic: RE: Undiagnosed Autism Spectrum Disorder
Hi, I have an 11 yr. old with Asperger's Syndrome who is high functioning but we have had many ups and downs. The Families Helping Families and the Autism Society have been tremendous support networks for us. I alos joined the Louisiana Disability site which provides lots of information. I just received an email about a video for younger children helping them with social skills and thought I'd share it with this board. It sounds interesting. The following is the email:
I have found a very cool little product I think you
might enjoy hearing about!
It's called Model Me Kids and it's a video based way
for kids to learn social skills. Most children with autism are
exceptional imitators. Particular of things they see on TV or in
videos. This product takes that trait and turns it to your
advantage as it provides your child with video models of the vital
social skills they need to survive and thrive in our social world.
Created by autism experts, this tool is truly designed
for your visual learner.
You can learn more about video modeling and watch
excerpts from the Model Me Kids videos on their website:
http://clicks.aweber.com/z/ct/?L85dWplzLzE7_ljDNjReMw
Hope this helps someone,
Anne
254/175/1??
Topic: RE: Today really SUCKS!
Jenn,
first let me say I'm sorry that you are going thru this. I only have one little girl and she has asperger. She wasn't dx'd until she was 7 or 8. Before that all they would tell us was that she was adhd. So we lost all the early intervention. Thank God you have that on your side. Some days with her are wonderful, almost normal then others are a totaly nightmare. All I can say is stay strong and when you can't ask for help. I keep reminding my self that if it is this hard on me I can only imajine how it must be for them. Pam
Topic: RE: A little Rant/Rave
I totally understand what you mean. We are just now fine tuning my daughter's help as well. Our biggest hurdle has been family thinking that we just need to beat her normal. Pam
Topic: RE: Cool Forum
Hello KD,
I am so glad to meet you. I have an 11 yo daughter with as. I am so glad to see an adult with this condition. I needed to know that there is a chance for her to grow up, get married, and even have children of her own.
Welcome to this board. Come here a lot. I check in about every two days since there is not a whole lot of activity. I will see your post eventually though and will respond. Pam
Topic: RE: Today really SUCKS!
Just remember, you will have good days that out weights the bad.
Therapy is all you can do at this time .
I have my son in Boy Scouts ,and it forces him to be more outgoing, but I was always at the meetings with him.
Kim
Topic: RE: HOW DO YOU HANDLE THE STRESS?
I heard a speaker once who said that parents who lose a child, go through the grieving process and get on with their lives as best they can. Parents with a disabled child go through the grieving process over and over and never make it through it. I totally understand your frustration. One on the things I have the most problem with is not participating in normal "family" activities like attending weddings. celebrating an event together at a restaurant, etc. I have tried and tried over the years to make our family seem as normal as possible but then we end up with a disappointing result as you did with the wedding. My husband has finally convinced me that we might as well avoid some events if we don't have arrangements made for Jacob. It made me very sad to have to plan my oldest son's wedding on a weekend that Jacob could have respite care. It didn't seem right that he should be excluded but none of us would have enjoyed ourselves. It doesn't seem at all fair and it isn't!
We are getting to the point of looking for group home placement. Part of me feels like I am abandoning him but the saner part knows that he loves the structure and activities provided for him at a group home. He loves his weekend respites and cannot wait to go again. Our weekends with him bore him.
Our situation is the opposite. I have more patience with Jacob than my husband but then he has evolved into the primary caregiver which I assume is probably your role with your daughter. I think it is normal to be more frustrated when you are the one directing their activities and taking care of their hygiene needs etc. I don't think anyone could answer your question now about your daughter's future. All we can do is take it one day at a time. Some things get better but then new challenges develop. There is a lot of focus out there now on autism. The resources available now are so much more extensive than ten years ago so who knows what they will come up with in the next 10 years.
My sanity has been preserved only through my friendship with other mothers of autistic children. Family members, no matter how sympathetic, just don't have a clue what we go through on a daily basis. The older my child has become the more my family would just soon avoid being with him or hearing about our challenges. Deep down I know they are thankful it is us and not them and then there is some guilt that they don't know how or want to help.
Don't know if that helps. Email me anytime. [email protected]
Jan
Topic: Today really SUCKS!
Hi Everyone...
Well let me start out by saying I haven't had a good day. Tuesday I found out that my daughter (the oldest twin) has moderate to severe autism. Well TODAY I found out her sister does too, a milder form, but in fact has it. My 3 year old son was diagnosed with severe autism when he was 18 months. Thank GOD we have had all 3 of our kids in therapy at such a young age. I'm hoping all the early intervention will help them out later in life, but right now I'm feeling extremely overwhelmed!!!!
If anyone has more than one child, sibling, etc with Autism I'd love to hear your perspective on how you may have handled it. At this point I don't know what else to do except for therapy.
Thanks for listening!!!
Jenn
Topic: RE: A little Rant/Rave
Robin -- Thanks so much for the kind words and prayers!!! BTW, I am by no means a superwoman. I am so fortunate that my husband is so involved with our kids too. We just do what needs to done.
Kim -- ABA is "Applied Behavioral Analysis". Think of Palov's Dog experiment. A lot of parents swear by it. Basically you pay a therapist lots of cash to sit with your child and in my opinion do "drills". They call it a discreet trial. It requires a lot of time, and a huge commitment. When my son was doing ABA it was very difficult for him to stay focused. Toys as motivation didn't keep his attention either. We tried many tactics to keep him engaged, but he would tire out too easily. Most of my son's success has been due to floortime and music therapy. According to an Autism Specialist here in Seattle, the most important thing I can do for him is to make sure he gets as many socialization experiences as possible. This way he can learn from others and learn by example. In his spec. ed preschool they have "peer models" which is a wonderful tool for him and others in his classroom with special needs.
My daughter (twin A) was officially diagnosed yesterday with Autism. We are planning on trying all the therapies that we did with my son. We'll try ABA with her as well, even though I don't like it. Tomorrow we get the results for her twin sister. I don't think she's on the spectrum. Her only real issue at this point is a communication delay.
As a parent, I feel I need to be open-minded about various therapies. However, frustration rears its ugly head when parents say that only one type of therapy will "cure" your child. ABAers are notorious for those kind of comments. Each family has to decide what to try, what works best and what they can afford. It's as simple as that.
Jenn
