Two Kids and Too Many Decisions

With the recent transition to center based services and too much time commuting to get there it has been challenging to make decisions about how long we will continue. Avery needs to get to school eventually and frankly so does Max. Our system of checks and balances is being seriously pushed to it's limits. I am drowning in choices and there is no definitive way to decide what is best without sacrificing something for everyone in the family.

I love the center and the therapists there, but this insane commute is almost too much and who knows what a harsh Minnesota winter will do. Also, how long can these kids really stay in ABA with a complete absence of other services. Both kids need to find their place in the world without a 1:1 therapist guiding their way, but when do we make this transition and even more importantly- HOW? Financially, I need to be working again and this presents a new dilemma.

It was so much easier when we just had to make decisions for one child on the spectrum.  With two, I feel like my head is going to explode some days. I want to make sure I make the right choice for everyone in the family and now we are at a fork in the road where no matter what we do someone sacrifices something. I guess that is part of being a family. Maybe we have just been lucky in the last 5 years or maybe these choices just become harder as the kids get older.

I should just be grateful that we have so many options and good ones too. I have to trust my motherly instincts and go for it. Nothing is forever and I suppose if we could handle the diagnostic turmoil and heartache, we can handle a bunch of tough choices. This is going to be a year of changes for our family that is for sure!

Home schooling

About a year ago I participated in a study regarding home schooling children on the autism spectrum. The individual who was doing the research recently contacted me to let me know her article was picked up. I am thrilled that this topic is getting more attention. There are so many creative ways to teach our children and home schooling has received a "bad rap" in the past mostly because people are ill informed.  Home schooling has been so successful for Max and I am sure I will continue to supplement his therapy services with home schooling for years to come. It is time consuming, but so can endless IEP meetings and a school system that is unable to provide a true, quality education that is individualized for Max's needs. Avery will most likely not need a home school curriculum, but if she does, I am happy to accommodate. Thanks to the researchers who are giving home schooling children with ASD the positive attention and respect it deserves! I will post the article when it is published.

Animals and Autism

I have been reading "Cowboy and Wills-A Love Story" by Monica Holloway. It has quickly become one of my all time favorite reads and has renewed my faith in the power of animals and children with disabilities. We have been wanting to add a furry new addition for some time now, but finding the right fit is challenging. There is a lot of information out there regarding the connection between pets and children on the autism spectrum. I have a friend who has a trained service dog to assist her children, but I am not sure that is what Max and Avery need right now. Also, that is an enormous expense that we cannot take on at this time. 

We found and adopted a 3 year old dog named Reggie. Everything about him seems perfect. My first impression of him reminded me of another dog we had (Amos) who loved the kids. It is amazing how Reggie is not be at all scared when Max is screaming and throwing a tantrum, which can be very loud and shocking even to adults who are familiar with Maxwell and his behaviors. For example, the other day when Max was upset, Reggie waited until he was calm and gently laid his head in his lap. Max's demeanor quickly changed to the happy sweet boy he typifies. The scene was beautiful. It takes a long time for him to get used to most people, but after just one short week, Max knows Reggie is his friend.  As for Avery, she enjoys the typical horseplay all children do with dogs. She kisses and hugs him, but also has already tried to ride him like a horse. Reggie is unconditionally patient and has not barked or snipped at any of the children. It has been about 5 years since we have had a pet and I am so glad we found this fabulous new addition to the Lewis house! Oh yah, he is great on runs with mom as well. YEAH REGGIE!

Kids will be kids

Zoe recently had her first experience with other children teasing Max. A group of neighbor kids were playing in our backyard enjoying this amazing weather and one of the kids made fun of Max's long hair.  Interestingly enough it wasn't the behaviors associated with ASD that were the target. Instead, the child said, "Ha, ha, Max looks like a girl with that long hair!" This is really very innocuous and so typical of children, but Zoe laid into him like the kid punched Max or something. She said, "That's my brother, don't talk about him mean!" She was so mad, but I was so proud. Somewhere in her mind she knows that Max cannot stick up for himself and she has made it her own special mission to be his protector. I don't want her flipping out every time another kid makes fun of Max, but I was beaming with pride that she wasn't going to let anything slide.

We have talked to her about how others react to Max and Avery and she has witnessed plenty on her own. We have explained to her that it is alright to stick up for the kids when others are mean, but not to ever be physical or mean herself. She is a smart child well beyond her years and I am so glad she doesn't even blink before reacting to others. It is that kind of passion she will need in years to come when kids only become more cruel. A few years ago she used to explain to the staring eyes of Target and Cub Foods, "My brother has autism and his brain is broken." Now she just goes in there as a fierce protector. Atta Girl Zoe! Mommy is so very proud of what a big and bold heart you possess.

One Week Down

Well the kids are one week into their new surroundings and the first stages of transition have been successful.  They were smiling when I picked them up each day and that speaks volumes. I am so proud of them! It is the same sticky sweet feeling I had when Zoe hopped on the Kindergarten bus for the first time.  I am still uncertain of what the future will bring, but it is nice to have options and change is always positive. Summer 2010 is going to be a milestone!

Philanthropy

April is over and so is autism awareness month.  I have been thinking a lot about philanthropy and the many non-profits out there that support autism spectrum disorders. In the past, I have not been all that educated about non-profit organizations or how they operate, but I have learned a great deal in the last year and for the most part it saddens me. So many people assume that every walk, run, picnic, or any other event sponsored by a non-profit is meant to raise money that goes directly to the cause.  This is not the case for so many organizations.

Autism Speaks is the one that bothers me the most. They promote themselves like crazy and have the money to do so since the Wright family is part of the higher ups at NBC. Ever wonder why the TODAY show has so many autism stories? There is your reason, which is not a bad thing at all.  The part that is irritating is that they travel the country each year sponsoring these big walks to raise a ton of money that DOES NOT  go back into our local autism community! They take that money back to New York and continue with rampant celebrity endorsements.  On top of that, they did a massive cut back on grants and research funding.  They claim it is due to the poor economy, but every member of their board has a 3 to 4 figure salary and are not lacking in raises either. This really puts a bad taste in my mouth when I know so many people who work hard to raise money for their local walk and their efforts do absolutely nothing for their children. This is just one example...

I realize that all businesses have overhead and that they have costs to cover for any event, but non-profit organizations are not meant to pad their pocketbooks! The very term non-profit explains that!  I guess I hate to see people so blindly put their name on anything autism related. It is in fact not always for a good cause. There is a lot of business involved that is not altruistic in nature. I wish more people looked into local organizations and tried to raise money that will actually help our local autism community.

I am a staunch advocate for autism and am determined to only support events that help my autism community that I am so proud to be a part of! I am running this weekend to aid a local center in raising funds. My kids don't go there, but their program is amazing and the dollars actually go back into it! That is philanthropy at it's best! 

It's Over!

Well we just said a tearful good bye to our last in home therapists and yesterday we had Avery's last day of school!  Max and Avery are not aware of the big changes ahead, but I am certain they know something is going on. I am so proud of how far they have come and what I am sure will be great future success. This has been the wildest of rides, but I would do it again in a heartbeat.

Thank you to all of the hardworking therapists and teachers who have put forth a tremendous effort to help my precious angels.  We are blessed to have had such a great group be part of our team.  Here we go.....