Temple Grandin had a mother too you know

Not really sure who my audience is but if you are involved with someone with autism, you likely know who Temple Grandin is. For those of you who are not in the know, Temple, or should I say Dr. Grandin, is probably one of autism's most famous celebrities. An HBO movie about her life won 7 Emmy Awards. She is a sought after speaker, has written several books, and has a career as an animal scientist. She made it into Time Magazine's annual list of the 100 most influential people in the world. Diagnosed fairly young back in the 1950s, prior to anyone having much knowledge about autism, Temple is one of those success stories that a lot of us parents cling to. Not only did she gain speech late, she went on to college, and even completed a PhD. She is far from the most "high functioning" (uughh I hate this terminology - perhaps a later post?) person with autism you have met - but she is probably one of the most accomplished.

But I am not here to talk about her. I read the books, saw movies, watched videos, read commentary. You can do the same. I had a picture of who she was, and one painted by herself inher own words. What I never knew was what helped to create this very admirable person? Who was this person's parents?

I had the opportunity last Friday to find out for myself. Eustacia Cutler - the announcement came out that she was coming to the area to speak, Temple's mom. "Temple is now 63 " years old herself - one of the other mothers who I mentioned the conference said to me. "Her mother has to be about 90!" went on my friend. As if a person of that age might not be able to impart some wisdom. *sigh*

I'd be lying if I said I hadn't thought about her age. And she knew it too - when I use the cliche sharp as a tac - I don't mean for an 84 year old. This woman had game. She knew we were all thinking about her age too - that's how I know how old she is - she said very early on in her presentation "let's just get this out of the way, I'm 84". This woman was articulate, bright, engaging. She did not paint a picture of sticky sweet scenarios. She told of the difficulties - then and even a few now. She did not complain, she just cited the hurdles. She still, regardless of all that she and her family achieved, stays on top of the most current research. She was incredibly real. She did not give false hope. But she did, in her own way, talk about the power of determination and persistence.

So many families I know whose children "lose their diagnosis" or become very high functioning turn their backs on the rest of the community. This is one group (the autism universe of those affected by ASD) that as happy you are to have them to help you through, a lot of people are more than happy to no longer need to be a part of. And that is a bit of a shame.

I am looking at purchasing Ms. Cutler's book to add into the ol' library. I do not expect it to give me answers, just add in some perspective. People are always looking for heroes to save them from lives woes, and I can include some families I have met on the ASD journey. They rely on the system; doctors, specialists, teachers, therapists to make the difference. Is it bad that I am trying to be my children's own hero? But like anyone who accomplishes anything knows - that needs to be with the help, and in this case with all those previously mentioned folks.

Take a look at Temple at last years TED:

Sophia's Spring Line

Here is the preview of Sophia's spring line of clothing choices ... While you may think I am being a braggart by showing off my beautiful child, this is actually an example of creative parenting. Sophia has hypotonia (low muscle tone, note: not weak muscles) and fine motor skill issues making disrobing and dressing difficult for her. On top of that-she has these sensory issues, she is very sensitive to noise and sounds - going to a store with loudspeakers, screaming children, and the flicker of fluorescent lights puts her on overload mode. Getting her to try clothes on in this environment, let alone at home, has always been a challenge. So what do I do? I appeal to her vanity. :) We had music playing and I had the camera out snapping away. Mind you - we don't have cable so how she would know what a catwalk is - I just don't know! Seriously - it was just a really fun and goofy thing to do - and she loved the attention Zach, Steve and I gave her (that she deserved I might add.) She tried on every single piece of clothing! HURRAY! And now without further ado, I present to you Sophia's Spring Lineup....

Let's Go Ride a Bike

Like a butterfly coming out of their chrysalis, here is my son, finding his wings.

Color His Word

Zach cannot learn his color names. He is not color blind. He can match colors. He can sort colors. He has been doing this (matching and sorting colors) since he was 18 months.

If you were to ask Zach to touch the yellow crayon he would have no idea which one to touch. However, if you were to put out a series of cards in front of Zach that had color names and ask him to touch the yellow one, he could do it. We have been struggling to get Zach to learn his color names.

We have asked some experts for help on this. Much of the advice has not been helpful. Here is where we are now.

I Never Knew....

I never knew that exhaustion and inebriation looked so much alike. But after reading my last post, I can confirm that indeed they do.

A death in the family is always a hard thing. When it is for a family that is out of town, it adds that degree of difficulty. When that family has been plagued with misfortune, the sadness is just that much more. Some deaths, while still sad, are not as much tragic as they are just filled with loss. Grandma S. dying at 97, sad. Grandma M. dying at 78, sad. Being killed by a drunken driver, tragic. A child's death, tragic. Death by a broken heart, also tragic. I feel that our family's death this week, although upon autopsy would reveal a specific condition, was fueled entirely by a broken heart. Not the type of broken heart in romance novels, mind you, but the type that comes from the inability to make sense of someone else that you love's own tragedy.

Probably best that we had the iPad presentation - it would be too easy to dwell in the unpleasantness of this situation for too long. The presentation snapped us back into the land of the living. Although totally unrelated, this instance may have even inspired me more to stay steady the course in our work to reach out to others who I believe are in need.

Indeed I know I did that. A father approached us at the end of the presentation. He told us of his multiply disabled 24 year old daughter. He was a tall professional looking man. He was pleasant, but there was this sadness in his eyes I cannot describe. He spoke briefly of the difficulties with raising their daughter, who at age 24, has yet to communicate a sentiment to them. I knew our iPad presentation was probably unable to offer him a way to meet their needs. I so wanted to be able to give him some answer, some recommendation. The best I could muster up was to encourage him to stay hopeful. He thanked us for our time, knowing how difficult it is when you have a special needs child yourself to take time to share. After 24 years this man is still attending sessions - looking for something that can help give them the connection they likely so long for.

I came home to our babysitter with a smile on her face, excited to share with us that Zach had successfully #2'ed on the potty totally self initiated during her stay. Sophie was already in bed. She told the sitter she was "exhausted", got dressed, washed up, and put herself to bed. She can be so mature!!! I went up stairs and kissed her goodnight. I came back downstairs. Zach took me by the hand and said "Momma come". I followed him up the stairs. He b-lined into my bedroom. I decided to not fight him, and dressed for bed. I got into bed with him, and lay my head on my pillow. He scooched himself over and lay his head on the same pillow staring into my eyes, and then smiled. Connection. Lots of them. Not the kind that others may require - no calling me "Mommy" no saying "I love you" hell no even saying "good night". I don't take that for granted, that ability to connect. I know plenty of people who can say everything they want, can express their feelings freely, and frequently do, usually in the form of disappointment or anger, but they haven't managed to connect with others. How blessed I am to have the ability to read my son and him me. Connection.

I kinda like who I am

Phew - it's over. The first presentation for the iPad is now done. Betcha Uncle Ron doesn't realize what a beast he created when he bought that iPad for Zach almost a year ago. We presented to around 60 people tonight sponsored by two terrific agencies in the area on the benefits of the iPad for people with ASD. It was even opening night for our new website/blog that, although still a work in progress, is informative and looks great because of the skill and caring of a talented young man.

I am a terrible public speaker which may surprise some of you who know me or have spoken to me. One of the reasons I didn't pursue a music career is that you mention the word competition or recital around me and the dry heaves set in within seconds. And let me tell you, there were plenty of them growing up, so it wasn't because I didn't have the opportunity. One of the things I used to like was accompanying on the piano. The chorus was nice - but I really loved playing with the orchestra - just no concertos please. A few bars to myself was fine, but I was more than pleased to do harmony and background support. All in all, what I really wanted was to be the conductor. Still do.

I am not sure if it is the age or the events of my life or a combination of both, but I am in this place where I can do things I never thought I could before. I know I have public speaking issues, I know I am not the world's most imaginative presenter, but I know tonight's presentation was good in that I reached a few people, I shared, and I may have done something to help someone. I know that although I might not have been the most titillating, the content of the presentation was top notch. Perfect, nope. Exciting, likely not. I can work on that - or more importantly, find people to help me with that. A friend almost has me convinced to do Toast Masters....

I love what I am doing right now. I haven't seen Steve so energized in a very long time, either. When you are in the right place, doing what you are supposed to be doing, that is what happens. It's still a lot of hard work, but it doesn't totally drain you.

I like that I recognize my flaws, but don't beat myself up over them. I love that I have learned how to ask for help and more importantly that I have managed to find some terrific people who care and want to help. This place where I am at - well, I found that I am much more accepting of people (with their flaws and all!) than I ever was before. And there are tons of benefits to that.

I still do/say stupid things. And I am blessed with people in my life who love me anyhow. I try to make sure to put in more than I take out. I think I have accomplished that.

I also realize that I may be too involved in my son's life. We have spent quite a bit of time lately together - and he is really getting that potty training thing pretty well. Every day he refines it just a little more - he totally self initiates his toileting.

What was most impressive to me was his ride around the block on his bike with training wheels. The kid ate it up! Overall, Zach is doing fair right now, although I am not thrilled with his progress by any means.

Our program is still in a state of turmoil - and there is very little guidance with getting appropriate staff members.

Between taking training, doing training, and working on Zach's program - there has not been a lot of time to sit down and hit the keys for another entry into the blog - and I lost a bit of my own personal therapy.

He still has that smile though. And his general health is good. But that speech... uugghh.. that speech is still so limited. I think after being hit hard with his unfavorable eval from Yale where they flat out told us that he should be doing more than he is, I really was down, I took it personally - as if I, and I alone, were solely responsible for the lack of progress.

Talk about too much self-importance! It's taken years, and I am far from who I would like to be, but I can honestly say that I like who I am right now. I still have all those pesky faults.

And so does Zach. But he's got dimples. You can always get away with so much more with dimples!

We lost Aunt Ronnie this week. Lots of training including our own presentation this week. I am pretty much exhausted. Sorry about the negligence of the blog.

Looking forward to better weather.

Yup

Within a 10 minute span: 1) He spelled the word funny on his iPad. 2) I found him with a serrated knife in his mouth. 3) He said to me "Want bless you", paused and then said "Achooooooo!", I said "God Bless You" and he laughed . 4) He managed to break the Tiffany lamp in my front hall. Wow.
Love him. Life is crazy.