Minnesota Autism Mom

I went to the Holland Center on Sat afternoon and I think I benefited most from speaking to the “owner” and some other parents. Once again, I am sadden to hear another devasting story of a child going to Kindergarten for it to be a horrible out come.

I also learned that the Holland Center takes kids ages 3-13. This has sparked my interest because I am not sure when my son will be done with ABA, but after meeting with HC and Autism Matters; I realized that age is not the reason to stop ABA services.

They brought this up during the discussion, as did the parents I talked to as well. The owner explained that we graduate kids at 7 because the state of MN wants services to be done with by that time (ok, because ABA is frickin expensive). And very sadly, the state views it like this – if the child cannot learn all he/she can learn by 7, then they probably won’t learn it anyway. (my heart sinks…is this valid?)

I wanted to see what other info I could find on this topic. I am copying it below…

From – http://rsaffran.tripod.com/faq.html

Is ABA appropriate for older children?

There is a popular misconception that ABA is useful or appropriate only for young children (under age 5). This notion probably comes from the remarkable successes of the UCLA Young Autism Project, in which many young children achieved normal functioning. While it may be true that the greatest benefit results from starting very young, this is of no importance when you are considering your child’s future: however old he may be, you need to be sure you are giving him the best possible future.

The teaching principles of ABA apply to all people at all ages. It is a science of human behavior. It guides us in how best to achieve goals of skill development or independence regardless of age or disability or ability. Within the limits of your child’s potential, intervention based on ABA principles will help him learn as much as he is able. Even if full recovery (normal functioning) may not be an option due to the severity of his disability or, perhaps, his age, there is no teaching method shown to have the same ability to develop his full potential.

A real tragedy is being played out again and again: young children are denied ABA services for years; then the parents advocate for a program, and are told, “Sorry, we won’t pay for that because your child is too old to benefit.”

From  http://autism.lovetoknow.com/ABA_for_Older_Autistic_Children

Availability of ABA for Older Autistic Children

While an impressive body of research supports the benefits of ABA when applied during the early years, comparatively little evidence is published about its effects on older children. However, anecdotal accounts from parents, caregivers, and autism professionals are many in regards to gains in social skills, learning ability, and behavior in older children.

However, anecdotal evidence is not enough for many health insurers, making it difficult for many parents to find coverage that will provide ABA for older autistic children. While some states mandate coverage of behavioral therapy for children with autism up to the ages of 18 or 21, many others cover ABA for only the younger ones, often only until the age of five.

Autism advocates are lobbying to change that lack of coverage. In Virginia, for instance, a state where most insurance companies do not cover ABA at all, legislation has been proposed to make such coverage mandatory. The proposal being discussed would require that health insurers provide autism treatment, including ABA, to any child up to age 21, with a maximum coverage amount set at $36,000 annually. Similar legislation has already been put into place in seven other states, and the autism community is applying pressure on many more state governments to follow suit. These measures would greatly reduce the financial burden on families of autistic children, many of whom pay thousands a year for ABA, and bring ABA therapy within the grasp of those without the resources to pay out of pocket.

Autism Resource Fair

Saturday, April 10, 2010
9:00 am – 1:00 pm
Buffalo Community Middle School
1300 Hwy 25 N. Buffalo, MN

Jill Kuzma, keynote speaker, is a speech-language pathologist who works with students with Asperger Syndrome, PDD-NOS, “high” functioning autism, and other related Social Thinking needs. She’ll be giving a talk on “Building Social Skills” from 10-11:30am. Free admission, Many booths and resources, Kid friendly activities, Food available for purchase.

Local Girl Scouts (5th/6th grade) will assist with semi-structured games & activities for youth. Parents/Guardians will be expected to remain in the building & responsible for their children. Contact Brandy with questions at 763-682-7941. Sponsored by the Wright County Autism Task Force.

Understanding Guardianship for People with Developmental Disabilities

Tuesday, April 22, 2010
TWO SESSONS: 1:30PM- 4:30PM OR 5:30PM- 8:30PM
SHERBURNE COUNTY GOVERNMENT CENTER
13880 HIGHWAY 10
ELK RIVER, MN 55330

Also included: PROVIDING FOR THEIR FINANCIAL FUTURES THROUGH WILLS AND SPECIAL NEEDS TRUSTS. Pizza will be provided at 5PM for those who register. PLEASE RSVP FOR THIS TRAINING BY CONTACTING MARY BETH BRUFLODT AT (320) 493-1231. Please leave name, phone number, and session attending. You may also email mbruflodt@dungarvin.com

Autism Awareness Day with the MN Twins!

Sunday, June 13, 2010
1:10pm game
Target Field

Twins vs Atlanta Braves. Home plate view tickets $24 value, selling for $18 ($5 handling fee will be charged). Event put on by Twins Baseball, AuSM and RT Autism Awareness Foundation. R.S.V.P. with Todd Krulewich at 612-659-3577 or email ToddKrulewich@twinsbaseball.com

One of the hardest parts of doing this type of blog, is that I feel I am setting myself up to be attacked. As time goes on, I think I will learn how to and when to respond to comments that are trying to annoy me. I am so used to being un-read and read only by those that support me (even if I have never personally met the person). My purpose is to reach out to others that are in my similar situation, not to have arguments. I am not comfortable with biomedical approaches and I am explaining how I came to this conclusion. Feel to not agree, but I am not sure if I really need to hear the other side anymore. The other side gets 1000x more media coverage than the pt of view I take. I feel I have heard it enough, but if you really think you can enlighten me or explain something better….well, then of course I am all ears.

Anyway, on a completly different topic. Coping, emotions, first diagnosis. I am not sure if this is the hardest time or not as I feel we are still at the beginning stages of being parents. Something inside tells me there will be lots of good times and bad times too. Is getting the initial diagnosis one of the hardest for the parent?

I recently responded to a parent at mampedia because no one else was writing her back in a way that I felt was really answering the question. Of course you should find the child therapy and if you want you can try biomedical therapies too, but she was asking about the grieving process. So I gave it some thought and come up with this. If you have more ideas, please comment below so that maybe this entry could help someone in the same situation. I am personally coming out of a dark hole of self-pity. I was tired of playing the victim and I will share a previous blog entry in the future on how I finally snapped out of that.

Suggestions for coping with a new diagnosis (copying my own answer and tailoring it to work in my blog)

How do you cope? I think it takes time. I got my son’s dx last April and I have come a million miles from the place I was back then. There are many stages of grieving and I am guessing you are in shock and you will be angry, amongst other feelings in the next year. It’s ok and you are not alone.You are not the first person to feel this way, but it is probably about finding other people like yourself that have been there. A support group would be a quick and easy way to find other parents with special needs children.

I have not found my support group to be a place to cry or anything like that, but it’s a group (of mostly women) who all know what it feels like. There is no pity, there is only understanding and this could be very valuable for you to find one and make time and actually go. In addition, a support group will help you possibly make friends, play dates for your child, and most likely connect you to resources in your community to make life easier.

Another consideration and resource is going to a therapist so you have someone to REALLY talk to. I would try to find one that has worked with people in our situations or at least is specialized in grief counseling. I have not done this myself, but I found our marriage counselor didn’t seem particularly competent is this aspect of our life and basically lost us as a client because I was looking for much more support in our grieving process than what he was offering.

There are also very good books about ASD. My favorite, but you might have trouble getting thru it until you are actually done grieving, is called “Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability”. I, myself, have not finished because when I was given it, I didn’t know if he had ASD or not (my son is 2.5, has mild-moderate autism). I could not decide if this book was meant for me (oh silly me), but I remember it outlining the emotions really well and will re-visit it as I can get to it.
http://www.autismspeaks.org/howtocope/strategies.php – Is a good read, I recommend getting the 100 day kit (www.autismspeaks.org/community/family_services/100_day_ki…) . It’s free and someone sent me to this site and I really appreciated the binder that was sent to me shortly after I asked for it. It has a nice wealth of info to get you started in helping your son/family.

There is probably more I could tell you, but support group, a therapist, and if you can…go to the library. There is a million things online you can read, but also know it makes it really hard to navigate and know what is right for you. I have found the internet to be a blessing and a curse.

I know you’ll be ok, he’ll be fine. remember right now YOU are dealing with this. He is not. He does not know (I assume he is young). Find supportive loving people. Drop the a-holes and I am sure with some time you will be in a healthier, less devastated place. I wish you the best.

+++My son just woke up from his nap. I will come back and spend more time on this entry later!+++