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!

The End is Bittersweet

The primary thing on my mind these days is the big move of services to the new MAC center. With all of the change and planning taking place I am now realizing the bittersweet nature of this farewell.  I will miss the day to day contact with all the staff, snack time, and seeing how proud and excited the kids get when they finally "get it" during programming. I think I forgot how lucky I have been to be so greatly involved in each aspect of their life every single day. 

I will miss so many of the therapists that have become a part of our family in a way. The company has specific rules in place to try and avoid boundary issues, but it is hard to not become attached. One member of the team has been with us since the beginning and I cannot imagine going a day without connecting with her. Others have been with us for years and even work with both kiddos. Of course not all therapists have made such an impact, but the vast majority have been amazing. They come to work and try so very hard to get the most from Max and Avery and do so well even on the "off" days. I am so blessed to have had so many wonderful, compassionate and dedicated individuals come through our home. The smiles on the kids' faces speak volumes when it is time to work. I am sure the ones that will be with us in the future are going to be equally great, but the reality is that they have some seriously big shoes to fill. The current staff is great! In fact it is the best group we have ever had in place. There isn't one dud in the bunch! :) I will miss them all dearly and if Max and Avery cold put their feelings into words I am sure they would concur. This is truly a bittersweet goodbye!

Back to work?

With Max and Avery going to the center soon and Zoe heading into 2nd grade next year the option of my working again has finally come. I am excited about this opportunity as my professional aspirations have always been high. I have not worked full time since I was pregnant with Avery and even that was short lived. I love every minute of the time I have spent home with my angels and wouldn't change a thing. You only get one chance to watch your kids grow up and although it was out of necessity that I stay home full time, it has been the best decision. I always figured I would work part time while the kids are small and go back to work when they are ready.  Autism and the journey we have embarked on changed those plans drastically.

I have been looking into part time jobs and full time jobs. It seems scary to enter the job world again and I know I would not be picking up where I left off.  I left a very rewarding profession and although I didn't get enough time to truly be established (in my eyes), it made a big impact on my life. The surreal part for me is that as a special education teacher, my work so closely resembles my life. That makes for an entire new set of challenges, but on the other hand, I have more to offer. I look forward to the future, but will cherish the time spent home. Who knows maybe I will be busier than I think and I will continue to run this ship from home. We shall see...

This summer though,  I am spending quality time with my sweet Zoe as she has taken the back seat too many times with the crazy home life we took on for the past three years. I look forward to a little freedom in our schedule and lots of fun times!