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.

Just finished applying for an elem. job in Mpls.

Just finished emailing a provider about an eval. My son is at the top of the list for a program that I am wishy-washy about. Well, I am wishy-washy about all of them. I am so tired of not knowing where our son should go to “school”. We decided to move forward with one and keep the one he goes to to make a full time program. It sucks for 2 reasons. 1 – medical transportation…but, I would get over it. 2 – 2 totally different approaches to ASD not sure if this will confuse him or me more. oh! And 3 – now they are telling me they don’t think MA will cover both programs as they bill similarly.

Which is so confusing! They just told me over a week ago that they are pretty sure that it will be fine. A part of me just wants to be like F@# it. It’s probably going to be a problem because you can’t figure it out. It’s like the real answer is, we need to find out before we’ll know for sure. Bottom line – not my problem. I learned that if an MA provider doesn’t want to do the leg work, then they are out the money – not me. They have to figure it out because they cannot send you a bill if they are an MA provider. So, hm?

Maybe we just need to send him to MAC? I want to send him to Autism Matters, but they don’t take MA yet for ABA services. I hope they will sooner than later. I just don’t know if I am comfortable with DT/ABA. I think VB just makes more sense to me and that is what he gets now.

My Nutrisystem food is on it’s way. It doesn’t look very good. No one on Facebook responded to my cry for advice on this topic. I am sure it’s not much of a win-win weight loss solution. It’s not helping me get more exercise or showing me really what foods I should prepare and eat one day, but this is not why I chose it either. I am hoping it will help me lose some weight initially to motivate me back to the gym or at the minimum maybe I can mimic the portion sizes and types of food. I plan on counting the calories, even though it doesn’t mention that…so I can see how restricted my caloric intake is and then hopefully find a way to do that on my own.

I just saw this blog entry today and thought I would pass it on. I guess it’s not very hopeful and I was surprised that at the end she thinks maybe mainstreaming is just not good for the child. This is a topic, as hard as it is to admit here, that has come up occasionally in education circles. This is why I worry about my child’s education. Do you push to have him mainstreamed to hopefully have him learn from and around his peers? Thus giving him what we perceive a “typical” educational experience? Or do we find a alternative experience…like ABA part-time, school’s like Lionsgate, or homeschooling? I know there is not a one size fits all response, but as much as I worry about what therapy we should do this fall (when I return to work) – I can see that I will con’t to ask myself if his current situation is appropriate. Oh…no simple answers. I guess I’ll go do the dishes now.

{Anyone try a toddler exercise DVD? I don’t know if my son would do it, but I am wondering if anyone else has tried it. I think I will get it from the library if I can find anything…}

Dan Stewart to Present Manifestation Determination Workshop on March 16
Dan Stewart, supervising attorney at the Minnesota Disability Law
Center, will present Manifestation Determination: What Parents Need to
Know, a free PACER workshop for parents of children with disabilities
and for professionals. Before a child in special education can be
expelled, suspended for more than 10 days, or placed in a different
school because of behaviors, the school must hold a manifestation
determination meeting to find out if the behavior is strongly related to
the childs disability and if the behavior was caused by the schools
failure to implement the childs Individualized Education Program (IEP).
The answers to these questions determine what happens next. This
important workshop is Tuesday, March 16, 2010, from 7 to 9 p.m., at
PACER Center. Advance registration is requested. To register, call PACER
at 952-838-9000 or 952-838-0190 (TTY). In Greater Minnesota, call
800-537-2237 (toll free) or visit PACER.org .

Holland Center ABA/VB: Program for Meaningful & Lasting Change:
Presentation will discuss the importance of selecting “impact” responses from the beginning regardless of age or pervasiveness of the disability. Once you establish and generalize those “impact” responses, you can more effectively, appropriately, and systematically addre…ss additional responses. Discussion will also include importance of using appropriate tools to establish precise “operant levels” and clearly identify barriers that significantly influence treatment effectiveness. Additionally, the importance of social validity should have on the selection, prioritization & evaluation will be discussed.

For more information, please call 952-401-9359.

I just finished up a lovely dinner b-day party for the husband. Son woke up confused with odd people in his home and happy, but more confused when Grandma and Grandpa showed up too. It took awhile, but he eventually warmed to the company and luckily hubby kept him out of the kitchen so I could make dinner.

We decided for me to not take the position. The money was crap. The money would be fine, but working at a school is not 12 months worth of work…so I had to say no. Just not worth it with daycare and MA expenses going up. My goal is to find a job teaching art…nothing else, unless something exciting jumps out at me. It might mean we will be living on only my hubby’s money for a few months. My thoughts – oh well, I need to get back into my career…not take a huge step backwards for the sake of ANY job. Not yet at least, hopefully not ever.

Some articles I am reading…

Occupational Therapy for Autism

Connection between ASD and GI tract?

Daycare.com

Pivotal Response Treatment

I don’t know if I was being discriminated against or I made this man nervous, either way, the way I was responded to was hard to handle as I walked out of the Children’s Workshop in Plymouth this afternoon. I was nearly in tears and totally pissed. I imagined myself calling headquarters or writing a nasty letter. But, I am in no mood.

Basically he could have said that they simply do not take children on a part-time basis, but he kept stuttering over himself trying to explain it to me. Then he finishes with, “I am not sure what your son’s “label” is, but we have never dealt with that and would not know how to deal with that”. He put label in quotes. I didn’t really get that since I was completely upfront about my son’s diagnosis and what I was looking for in a childcare center. I wish I would have responded in a fashion that showed him that he hurt my feelings. I wish I wouldn’t have been so nice about it all. But, I also didn’t know what to say. I guess he didn’t either since he couldn’t stop talking

Anyway, I am currently waiting for a phone call to tell me if I got a new job and how much it pays. I really hope it’s what I think and works out. I went there this morning to observe. I feel good about it, but they weren’t clear about the purpose of this morning’s meeting so I was feeling sort of confused. I really like when people can be clear and direct. I don’t know why they wanted to call me this afternoon. Are there other candidates? You know, I just don’t know.

On a different note: This is what I am currently reading…

Common questions for an ABA therapist

Teens with autism

This has weighed heavily on my mind lately. Never a clear answer. Constantly trying to think about what does MY son need and what exists. Even if you know your options (ABA/RDI/public preschool/private/daycare/etc)…then it’s a matter of openings. In the past week, I have had 2 places call with openings. I was on the waiting list since last April (so basically a year). The place my son goes is only half day and they had openings after 6 months.

Today I ran into this about.com article. Which might be a good place to start if you are in a similar situation. Once you know the options, then it becomes impossible to try to figure out what you pursue. But, if you are like me, you will just get on as many waiting lists as possible and more or less take the first one that calls.

Apart of the reason I started this blog, was to find others that are utilizing these PreK options so we can discuss our likes and dislikes of the programs. I only think we can make intelligent choices if we talk, rather than always talking to the provider.

Another conversation I have had lately with friends with children entering Kindergarten is the similar transition to K. Again, about.com has written up a great article to possibly help w/ this transition as well.

I also found these links doing a quick Google search.

http://www.education.com/reference/article/Ref_Living_Autism_Moving/

http://www.iidc.indiana.edu/irca/education/Kindergarten.html

http://en.allexperts.com/q/Autism-1010/Transitioning-Kindergarten.htm

http://www.questia.com/googleScholar.qst;jsessionid=Ln6hwn7RR26P3Y3Vh12QY8rLjTnRVrS7Fz8Vmp85zjp2GyLz2mYX!2144018255!1093128662?docId=5002101290

http://www.brighthub.com/education/special/articles/22295.aspx

http://www.post-gazette.com/pg/07234/811045-114.stm

What is it?

How do I choose a provider?

We have had our son in ABA therapy since Sept of 09. I didn’t understand it at all until I started to “YouTube” the word “ABA” and found that it was interesting and I was curious. There are numerous sites and books on the topic. Our son has made nice progress, but like anything, there is not magic wand. I am impressed that he is moving forward, but I will never know how to credit anything for his progress. I do attempt to be scientific about evaulating. He is not doing any other therapies and we do not have him on any biomedical therapies either. I hope by trying things individually that I can see clearly what is working and how well.

I would be happy to discuss privately our son’s current provider, but am not comfortable at this time of using names. Please contact me if you would like to discuss, as I am interested in other people’s opinions on their child’s ABA program too.

At this pt in time, I would not do anything else other than ABA. I believe until other types of therapies can prove that they are helpful, that I can’t waste my son’s time on anything that isn’t proven to work. On the other hand, I have an open mind and do not want to sound ridiculous. I just believe he needs to do ABA at least 20 hours a week. It’s a mode of teaching that seems very successful and has hard evidence of being so for about 50% of children with ASD.

Living with PDD-NOS - an excellent blog on one mom’s in home ABA therapy

I just finished reading “Autism’s False Prophets” and I would highly recommend reading it, even if you didn’t have a child w/ ASD. I believe everyone is bias and he clearly is a dr that sees his pt of view and is arguing it strongly and clearly.

Prior to having my son, I was told to consider spacing out vaccinations by co-workers (who happen to be teachers). Everyone said that they think vaccs are important, but also scary and shouldn’t be done all at once. The ASD scare was clear to me. I did the same. I did no research on the topic and was then was scared too by the amount of inoculations they wanted to put in my baby boy. I spaced them out. Did them when I wanted to and my son has autism today. I have no way to prove this, but I do not believe shots caused ASD in my child. I think he had a rough start and continues to be delayed today. Shots or no shots, I think my son would be the same.

So the first time I walked into the Autism Shop in Hopkins (the day after he was diagnosed), I was surprised and taken back by the woman in the store.  Her first question…”do you believe he has asd from shots?” Ummm…no, he didn’t have a traditional imm. schedule and blah, blah…Anyway, she dropped it. She moved on the GCFC diet.  She explained it wasn’t that hard to do and her daughter now goes to college..is cured or whatever. I was a little annoyed with her. I told her we just got the dx and were there to shop. She really wanted to discuss this and I felt overwhelmed by her need to educate me on the spot. She did this again the 2nd time Iwent in a few months later. I could not order certain products online, so I went to her store again. Same old crap and I couldn’t believe she was dying to bring this up again. I am not sure I will ever make a pt to go there again.

It seems like everyone is fearful of the all might shot these days. I see in newsletters put out by TACA, recommending to not give the flu shot or any other shot if your child has a dx of ASD. This makes being a parent very confusing. Is there weight to the argument that vaccinations cause ASD? Is it the mercury/thermisoal? I was tired of wondering and have started to read more deeply this week. Read online, read various books and after some serious thought, the most believable conclusion is of Dr Offit’s book. There is no proof mercury causes ASD. None. And Dr Wakefield’s conclusion that MMR/bowel issues are related to ASD has been all over the news lately…again and again disproving his theories. He was too quick to have found a cure and I see the media pointing this out today, but clearly the damage is done. How many people are not vaccinating today because of him? It’s going to take a long time to counter what has happened since the 90’s.

Anyway, I am going to try to conclude now (as I would rather be napping!!). I am not a huge fan of biomedical approaches. I am concerned about the desire to do anything and everything for a child. I worry about the emotional issues of proving you are a good parent by doing everything. I really liked Dr Offit’s comparison to polio. As he reflects on the desperate measures (and sometimes fatal) to cure a child of polio…we can easily see how history is repeating itself. It happens in all medical disorders that are not currently curable. Do you remember the cure for MS using bees?

I am skeptical of the GCFC diet, I think chelation is a horrible idea, and I most definitely do not think people should be scared of big “pharm”, but always cautious of well-intended, but uninformed individuals. In fact, that is a good way to wrap this up. There are A LOT of well-intended, but uneducated people. I am going to be extremely skeptical of the ASD cure until there is some serious evidence over a period of time. I am not going to let my baby be someone’s guinea pig. My new research topic…allergies/ASD/ and the GCFC diet. Where did all of this come from? Any recommendations on where to start?

Science Friday’s

My very first post w/ my very own domain name!!!

Right now, I am going to be anonymous, unless I otherwise feel it suits this blog to be more open about names.

I have been blogging since 2000 or earlier. I have had very public journals, to anonymous ones and even a locked journal on LiveJournal so I can say exactly what I really want. But… this blog…this is something new for me. I am not 100% where I am going with it. I just know I am excited to start a new blog specifically about my experiences here in MN with therapies, programs, relationships, milestones, media, milestones, etc. I am tired of having trouble finding information in regards to this subject matter. I want real opinions and I want to share mine too so I can help others like myself. Don’t get me wrong, there is plenty of info on ASD. Actually, maybe? too much. I hope I can help others by making this a place where I have already gathered a lot of the research together and that others will add to the discussion to make it comprehensive and interesting.

My son is 2.5 today. He is non-verbal, beautiful, curious, and attends only one therapy right now, which is a half day ABA program. I have worked with 3 school districts already and surprisingly a handful of private therapists in town. We have been involved with the school districts since our concerns around his first b-day.

Very, very recently I have given myself a reality check. It’s time to stop feeling sorry for us and this situation. We have many blessings. This may be very hard at times, but there have and will be just as many exciting, positive experiences too despite having a child with ASD.

I plan on going back into my LJ acct and pulling out older entries to give this blog some body and energy. Excuse me as I get this thing going.

Please comment below to say hello if you have gotten this far. I hope I can make this blog into something sooner than later!