Turning 18

It is wonderful when our children grow up. They learn new skills, have different likes and activities, and they are becoming men and women. I n the autism world that can be exciting and scary. Things others take for granted can be a source of anxiety for parents on the spectrum.
This year, I have to do many things to prepare my child for adulthood. He has to have a state ID, register for selective service, have a behavior support plan created, visit a psychologist to determine his disability, get as much of his dental care taken care of, and figure out how to be his guardian. The other stuff was a slam dunk. The guardina thing, well, I am still trying to figure that out.
When these times come up, we can look at our children and see the obvious differences between them and other children. do we allow them to move into foster care and have lives of their own? Do we keep them home and continue to try to figure out how to care for them ourselves? What are the resources for adults in our community?
So many questions, so little time.
What to do?

For me, this is a big question. I spend hours worrying over the details of what I percieve as the change of a lifetime. I concern myself with the changes so much that I am in a constant state of worry. as a therapist, you would think I would know better. As a parent, how can you do anything else?
I suppoer there will be answers like anything else. There always are. Fretting and concerning myself with unnecessary things is not productive. as a highly productive person by nature, it is counterintuitive to behave this way.
So for now at least, I will slow down, enjoy the fall that is starting here, relax a bit and try not to borrow too many troubles from tomorrow.

What the heck?

I hear a lot of stories from the autism community where I live. lots of them sad, some of them funny others uplifiting.
One of the great things about being a therapist is getting to hear people’s stories.
I have pursued places for my son to visit without being harassed for many years. One of these places is Mt. Hood Kiwanis camp. This camp, partially funded by the efforts of the kiwanis foundation provides a beautiful and safe place for developmentally disable kids to hang out for a week doing what regular kids do at camp. each child has a counselor assigned to them that has been trained in the area of disability work at Portland State University or surrounding schools. These counselors work with kids all summer and from what I hear have a blast doing it.
Chris had attended the last six summers and has enjoyed every bit of it.
For the first time I get to give something back to these people by way of volunteering at a fundraiser this next saturday. I am very excited to be able to do something to show my appreciation for the love they give my son each year at this phenominal camp. If you have a child on the spectrum ands are concerned that there is noone that can care for your child so you can get a break. Forget it. These people are very well trained and have hearts as big a texas. There is nothing I can say about these people but good things.
So my little story for today is this:
Each year I go to the camp on Sunday with my son. We drive the two hours up mount Hood and drag all of his “necessary” equipment along so he can stay calm while at camp. When we arrive, sometimes we see kids we know and sometimes it is a whole new bunch of characters.
Last year we arrived and after check in something new happened. He took off, waving goodbye walking toward the older kids playing basketball in the lot aside the conference room. Now this may not sound like much to the regular parent but to me it was the first time my son had exerted his independence from me to hang out with other kids. He was insistant that I not embarass him by kissing me goodbye either. Little crap would not even let me hug him. He is usually a big hugger and likes to have me kiss his cheek goodbye when he leaves. I guess at nearly sixteen he was ready to let that go in front of his friends.
I cried most of the way home. Not because he had not wanted to have a goodbye but because he was acting like the nearly sixteen year old he was.
He will be nearly seventeen this year at camp and has grown to a height of 5’9″ and wieghs areound 230lbs. He decided to let his hair grow and it is long enough now to wear the “genie pony tail” he has been working toward. Watching this nearly grown man walk to the bus in the morning is very satisfying. Even if he still takes his blankie with him. Giggle
I guess he doesn’t have to grow up all at once, does he?

excitement

In my town, there are few supports for those with the challenge of autism. In a near by town though, there is a group that embraces the differences and supports the artists among us.
One of these supports is an art show. This weekend there is a juried art show in Eugene Oregon for artists on the spectrum.
How cool is that?
I am going to the show to see if I can bring that type of outrageousness home with me.
I was speaking to my half brother the other day via the facebook and it was curious that he was concerned that he may be on the spectrum. Now he is one of the smartest and well educated as well as successful members of my family.
He was concerned he was different.
How funny that we humans need to find the differences in our process as a failure rather than a success.
If you search hard enough you can find something wrong with yourself. If of course that is what you want. What I propose is that we each search for what is right about ourselves and focus on those things.
Life is fraught with challenges. It is sort of the nature of the game really. We grow more from our challenges than our successes.
I think we need to not only embrace those things that are good about us but strive to be outrageous. “normal” people are not the ones that make the changes in this world, it is the extraordinary that do.
be bigger than life. Push the limits of our beliefs. Change the status quo.
Show the world that every human has value. Pray for guidance when you get weary. Speak up when you know something is wrong.
Remember what Gandhi said: be the change you wish to see in the world.
Goodnight

monthly paperwork

If you are lucky enough to get services from your state or county, it is time again to file the paperwork. This also comes in time to look over IEP’s and medication logs, bills, schoolwork, and the mirad of things parents do.
I don’t mind too much. I would say I don’t mind at all but that would be a lie. I mind a little.
I am blessed though. I have help. I met a parent the other day that had their child removed from their home because he is a runner. If your child is not one of these count yourself blessed. Mine was. Not sure why he changed but he did thank the lord.
When he was young, he could break out of the house no matter what you did to keep him in. He was amazing. He got the iwndows loose so we put locks on them. He got the doors open (even deadbolts up high) so we installed security doors. He got out the doors when people entered and left. He even got out once and we never figured out how.
He was really good at escaping. Cool thing was I had people around me that understood that I was doing what I neded to do it was just an extroidinary situation.
Not everyone is as lucky.
I remember days and weeks when the sky was grey and could hardly leave my bed. So much grief and loneliness. I had no help. There was noone to turn to for a break. I lost my job and my mind.
I could not understand what was happening to me. I was living in a surreal world and it was as if I was the only one.
In my practice, I work with people that feel that they are the only one. There is such a lack of information about what is in your particular neighborhood that you can feel alone.
I have made up my mind, no more aloneness. I will be starting a support group in my area soon.

Death and Church

I know Death is a taboo subject in our culture but I am so not on the” normal” side of the taboo subject that I will discuss it anyway.
Mainly because I lost someone I cared about this week and something wonderful came of the time I spent with what I consider an extended church family of mine.
Bear in mind, I am hardly the type of person that would be accused of being fundamentalist but my faith is strong.
She was a person that came to me first thing and at my first attendence at this church. She was different and unusual and for some I would imagine scary. Jaye was the kind of person you meet once and never forget. She gave much better than she got and being a raging transexual she definitely pushed boundaries whereever she went. Including the boundary that I had set up without knowing it. The one where” nobody will accept me and my son”. Boy did she challenge that one.
She was the first person to come to me and tell me that my son and I were not only welcome at her church but that she wanted us there. I was so relieved to hear that. I have had some very bad experiences form some well meaning people in church situations. Not this one. My son argued and complained all the way through the meeting. Friends do not have traditional church they have quiet medatative meeting so you can imagine that my very loud son could really have upset the applecart.
Not so. This beautifually open minded set of extra ordinary people made sure we felt at home, and Jaye was the first.
She struggled with many of the same things we all do. Depression, marganilization, feeling like we just don’t belong, different, unloved, unworthy, and the list continues. Jaye never ceased to ask about my son Chris. Whenever I happened by her she never passed up an opportunity to invite him back.
I was going through a very hard time and she was there to help.
This week she lost her battle with life and I will miss her spark.
The incredible things is that I had not taken Chris back to church since the first couple of times we visited a few years ago.
I told Chris we were going to church tonight to say good by to Jaye. He was excited to go. He remembered everyone and enjoyed his time there. We were all grieving but he was celebrating. He knew he was home. What a nice feeling, he felt at home in a church with a family and extended family. It has been a long road to this place.

Dr visits

I was impressed by my son yesterday. He impresses me most days but yesterday was a really great day.
We had to go to the doctor. Not a fun excercise in my house since none of us really likes going and especially not my youngest son.
Most trips to the doctor involve a lot of loud refusing and attempts to negotiate out of a visit. It is nearly impossible for the doctors or for that matter any medical professional to figure out what is going on for him since he is uncooperative.
Not yesterday. I don’t know if it was the doctor ot the fact that I bribed him with what he really really wanted if he was good but all went smoothly. even when the doctor wanted to look in his ears and throat he cooperated. that just never happens.
I was thrilled.
It is on these rare occasions that I actually feel like I might be a good mother. He bahaved, cooperated and made me look good. Unlike the other times when his 5’10″ frame is tantruming he was sedate, happy and in great spirits. I looked good.
Not that that is what it is all about of course but when you deal with a child like ours you get people literally screaming at you for your childs behavior. It can be so frustrating. You are in a never ending loop of advice about how to raise you child because everyone knows what is best for them. It is funny, or rather irritating that they think they know what is best.
On a day like today, my parenting and all of the sacrifice is rewarded by this simple little thing. He behaved! Yeah to the little things that keep us sane and continuing on our path.
May each parent feel the peace that that little behavior change did for me.
Namaste’

Sorry

Sometimes I forget to check spelling before I post and my last posting was like that, Sorry for my impatience.