Minnesota Autism Mom

I recently ran into this website – OT Plan. It’s silly that I didn’t think of OT’s having a site like this when there are similar in education. My son doesn’t see an OT despite needing one. This site is great because it gives you OT activity ideas.

I don’t mean to be rude or calious, but in all of the times he went to see one, I didn’t get what they were bringing to the table. I mean, what was she doing? This last summer, he was getting pushed in a swing (which I was encouraged to get for the house) while he played with toys. ???? I can’t figure out if there are so many shitty parents out there, that this service would be significant for some children or what. Don’t get me wrong, I heard her reasons for playing with him the way she did. But, mostly it was  no different than what him and I did together. They could have said encourage him to do X, Y, and Z and we could have done that at home. (I kept him in just so someone else would play with him for an hour, yes, seriously (and sadly)).

So as I play with the idea of getting him some OT time…I just can’t make a decision, is it worth it? He’s in therapy 4 hours a day. Now we have added another 2 hours of speech. What will the OT really do?

So do you have strong feelings about OT time? My child has been seeing one from about 14 months – 27 months. He has ASD. I am sure certain disabilities make this a more essential therapy than others. Thoughts?

BTW, major milestone hit in the last week or 2 – He can walk down the stairs!

This is becoming a hole to no where. I can’t fully enjoy quiet journally to myself because I know I put the link of facebook (amongst a few other places). I also know a few people have said, I read your blog, I just don’t have to time to comment. (which is fine, of course, I just don’t know who my audience is (if any!))

Hint, hint – just say hi in the comments if you just read this. thanks

As a personal update, I think I finally made a decision for my son’s programming. I am so tired of asking myself where to send him this fall. There is one place that is FT, but it’s not verbal behavior (VB/ABA), so we don’t know if we like that. Then there are 2 places I am quite interested in, but neither takes MA/TEFRA and I am not getting MCHA when there are other options for day treatment. (Plus, both places are working on getting MA, so that’s a wait-and-see thing).

The reason we didn’t want to send him to the place he goes right now all day, was the lack of outdoor facilities, but it finally clicked in my little head – but, he doesn’t need to go outside in the winter! So I think, for now, our plan is to take him where he is FT this school year and see how it goes. Then in the summers, I am hoping he can go less or back to PT so we can still have a normalness.

I am so happy to have made a decision. If the school doesn’t like this idea, then we are back to where we started. But, still…I think we’re good now.

Plus, school has been incredibly receptive to making changes.

I have some links I want to share. To go along with this random post…

Finding therapies in MN

Minnesota Yellow Pages for Kids – great site with lots of therapy, etc options in MN. Much broader than what I have posted before.

Minnesota On-Line Special Needs Directory

Speech therapy related Links

http://mommyspeechtherapy.com/

http://asktheslp.blogspot.com/2009_02_01_archive.html

http://www.speechtherapyweb.com/

http://teachmetotalk.com/2008/07/15/discover-the-best-approach-proven-to-teach-your-toddler-to-talk/

http://www.speakingofspeech.com/

http://www.talktools.net/

PECS – free pictures

http://trainland.tripod.com/pecs.htm

http://www.dotolearn.com/

http://abaresources.com/free3.htm

http://books.google.com/books?id=Dhp67nHdUs8C&dq=ideas+teaching+teacher+about+a+special+needs+child&printsec=frontcover&source=in&hl=en&ei=JBqQS_STGYG6NfaFyZ4N&sa=X&oi=book_result&ct=result&resnum=12&ved=0CD0Q6AEwCw#v=onepage&q=&f=false

Random good stuff to look at

http://sites.google.com/site/autismgames/home

http://www.tinsnips.org/index.html

If you are interested in a half day therapy program for your PreK child (with ASD), you may want to go to their open house. I am very impressed with their warmth and facilities, but have never sent my child there for anything. Have you? Would love to hear about your experiences. Open House is on March 15th.

Going back to an earlier entry about dealing with the diagnosis (as a parent), I believe therapy for you as an individual or couple might be a necessary component if it feels like it’s too much to handle. If you are looking for someone locally, check out Project Aspire. Bad news, she doesn’t appear to take insurance, but I think it’s worth looking at because she offers a variety of services.

And on that note, I highly, highly recommend “Married with Special-Needs Children – A couples guide to keeping connected”. I don’t think I’ll ever sell or lend out my copy, as I think this is a book I will re-visit over and over. The authors advice address issues that affect all marriages, but I really appreciated the direct information about the special needs children. They do not ignore the dynamic of adding children to your life, let alone the intensity when you have have children with special needs. It’s a great use of $14 if you aren’t getting counseling and need support.

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

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

ABA Therapy (what is ABA???)

Behavioral Dimensions
415 Blake Road
Suite 240
Hopkins, MN 55343
952 814 0207
www.behavioraldimensions.com
office@behavioraldimensions.com

LIFE Midwest Treatment Headquarters
2925 Dean Parkway
Suite 300
Minneapolis, MN 55416
612 925 8365
612 281 8331
Nebraska Office 402 328 0283
Fax: 612 925 8366
www.lovaas.com
Contact: Kristy Oldham
koldham@lovaas.com

MAC – Minnesota Autism Center
5710 Baker Road
Minnetonka, MN 55345
952 767 4200
Fax: 952 767 4211
www.mnautism.org
The Minnesota Autism Center’s Mission is to promote and provide intensive home, school and center-based behavioral therapy to children, youth and families affected by Autism Spectrum Disorders. MAC currently services children and youth ages 2 to 21 throughout the state of Minnesota through a variety of programs.
info@mnautism.org

PIE Partners In Excellence
14301 Ewing Avenue
Burnsville, MN 55306
952 746 5350
Fax: 952 746 6131
pieofmn.com
We are a provider for ABA and Verbal Behavior Services. We have 2 sites and serve children 1 -10 years old. Some insurance companies pay for services.
Contact: Deb Thomas
dthomas@pieofmn.com

PIE Partners In Excellence
2344 Helen Street N
North St. Paul, MN 55109
651 773 5988
Fax: 651 773 5978
pieofmn.com
We are a provider for ABA and Verbal Behavior Services. We have 2 sites and serve children 1 -10 years old. Some insurance companies pay for services.

Lazarus Project

3021 Harbor Lane N

Suite LL105

Plymouth, MN 55447

Fax: 763-519-1198

Floortime/DIR (What is Floortime?)

RDI

Leanne Mairs, MSW, LICSW
Crossroads: Solutions for Life, L.L.C.
Maplewood, MN
612 812 0493
www.crossroads-solutions.net
leanne@crossroads-solutions.net

Mariko Ortner, B.A.
Creating Connections, Inc.
Bloomington, MN 55425
952 854 5665
Also speaks Japanese.
mortner@comcast.net

Fraser Autism Program
Fraser Child & Family Center
3333 University Ave SE
Minneapolis, MN 55414
612 331 9413
Fax: 612 728 5301
www.fraser.org
Each year, Fraser works with thousands of families affected by autism spectrum disorders. Fraser provides evaluation, direct services, information, and support for children, adults, and their families. Our programs are nationally recognized for their high quality and innovation, and our staff is skilled and caring.
fcfc@fraser.org

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!