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.....

Acceptance

According to the Merriam Webster Dictionary, to accept (in various contexts of course) means to receive willingly; to give approval for; to endure without protest or reaction; to regard as proper, normal, or inevitable; and to recognize as true.   

Interestingly enough, I think I have officially come to a place of acceptance with autism. At least according to this definition.  I may not like most of what autism has to offer my children and acceptance has taken a while to find.  I do willingly accept the challenge on both good days and bad. I approve of the diagnosis. I am never in doubt that my children have autism. I endure the path parenting has taken me, although  I do protest at times.  I am not a saint! I don't know how normal autism is, but who is normal anyway? For us, ASD is our normal and I can certainly accept that!

Siblings and the Spectrum

I read an article this morning regarding the emotional impact having a sibling on the spectrum can create.  There was nothing really extraordinary about the article's contents or sources, it all seemed pretty basic and obvious. Nothing I have not read before.  There are a lot of resources available to aid parents in explaining autism to their neuro-typical children.  I question the validity of these resources as much as I do any parenting book and magazine. I am not sure these kind of "how-to" books really help at all. You cannot tell people how to parent by writing a book, only experience can dictate that path as far as I am concerned. In terms of autism, how can any read encapsulate all of the emotional maturity needed by a sibling of a child with any disability. I know parenting books are meant to be used as guides, but I have never been a  big fan.

I worry as much about Zoe's future as I do Max and Avery's. The fact that it is more likely my children with autism will outlive me is staggering at times. I worry about the quality of therapists and caregivers when I am right here at home, the thought of who will be their primary caregiver after I am gone takes my breath away EVERY time it crosses my mind.  Not only do I worry about who will properly care for Max and Avery, but the burden this puts on Zoe. She will have a healthy responsibility on her hands and I feel bad for putting that on her as the only sibling. There isn't even anyone to share in the duties. Of course I do not know what the future brings and where Max and Avery will work and grow up, but one things is for sure they will need to be looked over directly or indirectly and after I take my last breath I guess Zoe gets to take over. Scary and sad at times.

On the other hand, all of the stress and sacrifice that Zoe endures will also make her a more caring and compassionate individual. She has already had to deal with more in her 7 years than many children will ever have to handle.  She struggles with why her brother and sister have autism and how that changes her world, but overall her heart is big and her smile wide. She gets mad and angry at what she has to give up, but she will be the first to tell you why her brother cannot handle loud noise and bright lights or why her sister sometimes says the same thing over and over. You certainly cannot learn those life lessons in Parents magazine or any book that is for sure!