Forsaken

We have been lied to, cheated on, and taken advantage of so many times since we started down this path, that I am numb to the inequities and unfairness of our situation. And I will reiterate, Zach is not the problem. Zach is wonderful. People treating our need as if it is something they can take lightly is the problem.

As much as I am grateful for help - I do not like the lack of professionalism I feel that we have been forced to accept because of our situation: there are those who are paid to assist us who show up late, leave early, miss multiple sessions, text during sessions, show up unprepared, don't do what they say they are going to. I have always tried to be fair and understanding. But all this latitude I have afforded people has created much too much a comfortable environment - and people, purposely or not, took advantage of that.

As "smart" as some say I am, and as much as I know what my son's needs are, that just hasn't managed to equal that Zach gets what he needs. Initially I thought it was my stubbornness getting in the way, my difficulty in asking for help after many years of being fiercely independent. Autism has definitely taught me to ask for help. When it turned into pleas for help, I realized that my stubborness was no longer the issue.

I understand that I have a strong personality, and I realize looking back these last few years, that I have tried to compensate for that. I have accepted poor performance and inappropriate conduct to neutralize my particular negative ways. I feel terrible guilt that in an effort to make up for my faults, I may have jeopardized my son's future.

It has been a particularly bad week here. Steve just realized two days ago that our main therapist will be leaving in two weeks. I am not sure how he didn't know this other than there has been so much turnover and confusion, and he has been in the midst of major deadlines at work, that he just didn't hear. Zach is getting bare minimum services right now. And his latest special ed teacher has no experience with kids on the spectrum.

On top of that - we are currently in the process of determining if Zach may have Lyme disease. This has required testing and administration of many rounds of antibiotics which has me growing weary. As discussed in a previous post, hair cuts and dentist appointments are two particularly difficult tasks for some of our ASD kids, for which I can personally attest, and taking 6 doses a day of medication, each one a struggle, pure torture for both me and Zach, is yet another common difficulty for some of us, too.

Yesterday, after an hour of unsuccessful attempts, and the clock ticking as the time to get to an engagement clicked closer and closer, I lost it. For the first time ever, I yelled at Zach. I couldn't calm down. I was so upset, so exhausted, so resentful, I couldn't believe it. But he couldn't help it either. Some of it was his refusal to comply, but I keep in mind that he does not have good receptive language; he does not understand that it is something to do with his health- I cannot get that information across to him, so why would he comply?

In the end I became totally ashamed that those people who I should have been yelling at received my patience, and my beautiful son who deserves nothing but total compassion and every ounce of patience I have, likely received their portion of my frustration.

Trudging through mud again.

This one's for you Aunt Cindy

Haircuts. Yep. Another thing you likely take for granted if you have typical children. When I was still working, Sophia had seen an advertisement at Nana and Nono's house (her surrogate grandparents who watched the kids while I worked) for a place to get a haircut. They had a little jingle that she used to sing it all the time. I remember thinking that my kids were getting exposed to the advertising on TV which since we were diehard PBSers and DVD/VHSers - hasn't managed to make it's way into our house to tell us how inadequate we were at just about everything in life. Like I need reminding, ya know? But you know, not all advertising is about sucking every penny and ounce of selfworth out of you. Sometimes it is just that - letting you know they exist and could be a service to you.

So finally, as a reward for something, I told Sophia we could go to this place called Snip-Its "where a haircut is just fun". And a haricut likely costs a pretty penny too. Here we are a couple of years later, and guess what. We are still going to Snip Its.

Kids on the spectrum (depending on symptoms) frequently have trouble in a couple of places in particular - the dentist and the hairdresser. We managed to hit both of these troublesome places within a week. Hurray for me.

This past Christmas, with time being the biggest constraint, I decided to try Super Cuts for convenience's sake. Aunt Cindy joined us - and likely had no idea how agonizing this venture was for me. I won't go into too many details - here are a few recollections that made this event particularly memorable:

- I walked into the storefront and asked for the bravest hairdresser in the joint. A girl actually volunteered.
- At some point, other children there were making comments like: "Mommy - is she hurting him?"
- Her tip was as big as the cost of the cut itself.

So back to Snip Its we went. And even though it is considerably more expensive, it was worth every dime. Oh yeah - and for April being Autism Awareness Month they actually knocked off $5.'

The reason this placed worked better? I have a few ideas. First off, he's been there before and understand the expectations. Secondly, there are a lot of distractions, fun decorations, a train table, television screens playing animated movies. But a good chunk of it was having a professional who took the time to learn a bit about our kids, accepts them, and has come up with a few tricks to ease some of the issues. One trick was that she let Zach hold the sheers and feel the vibration. The other thing is that she is firm. All in all, I always appreciate these people who go out of their way for all the right reasons.

Isn't he cute?

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.