Sibling Explosion

That’s what Y is calling it. What is it?

For years it was just Y & J and a half-brother they knew about but weren’t in touch with. The situation was complicated and not an important equation in what’s happening now.

And now it’s Y & J, a half-brother they knew about and two more half-brothers – who they didn’t know about either. Then there’s also their adopted older brother. Like I said, it’s complicated, but in a good way because the end result is Y & J now have four other brothers. There’s also a little girl due soon. Thus the sibling explosion.

This has changed all our lives. It’s a lot for us to take in. It’s especially a lot for Y & J. Both are dealing with it and processing it in their own ways. Both are seeing their therapists. Hell, we're all seeing our therapists.

This has been an incredible change for J and it’s affecting him the most. Life as he knew it ceased to exist. (Both kids have said this) He’s now trying to adjust to the fact he has two older brothers and two younger brothers. He’s excited about it but it’s also stressing him out in a big way.

I mentioned before J has also has tourette’s syndrome. It’s mild and his medications keep his tics under control. They only emerge when he’s really stressed out, which he is right now. So, both tics - physical and vocal – are present. He’s not letting them bother him, though. He keeps telling me they’re out for a good reason – he’s working hard to get used to the fact he has so many brothers now.

J has a hard time with change but this is one he wants to embrace and is working hard to do so.

He’s meeting two of his brothers on Sunday. They live north of the Twin Cities and are going to be in town this weekend. Both Y & J are looking forward to meeting them, as am I.

Their other two brothers live in a close by suburb and we can meet up with them and their mom at any time. Sports and theatre and school are keeping us all busy but we have time to plan something.

Right now the kids are talking to each other as are us moms. I think this is great.

And where’s Dad? He’s here. He’s working with me on slowly getting in touch with the kids and being a part of their lives. I’ll say it again, it’s a complicated situation but that's okay. I don’t dwell on it anymore. It’s the past; I leave it there.

I’m happy Y & J have connected with their siblings.

Worrying too much

J making friends in the neighborhood here has not been easy. He's been teased, ignored, left out, accused of things he didn't do, especially when he wasn't around when said event happened. It's been hard seeing him go through this stuff. He has friends at his old school but he hardly saw them at all this summer. He decided he wanted to make friends around here. Knowing he has to experience the hardships of growing up I've watched him do this through trial and error. And it's been hard for me to hold myself back. I want to protect him from everything.

He's made friends with two kids who are a year older than him and live about two blocks away. He met them through Y and some of her neighborhood friends. They usually hung out over here. Yesterday evening J hung out over there. The moment he left the house I began to freak out and worry about him. I kept telling myself my concerns were bordering on irrational. I think I was so afraid of him being teased and such. I had to keep reminding myself this is what he wants; what I want for him. I had to tell myself, "Cut the apron strings, Mom."

He came home later and told me he had a great time.

All my worries were for nothing.

I’m not an Autism Mom; I’m not an Autism Parent.

I am a mom to an autistic person (my son); I am a mom to a person with autistic traits (my daughter). That is my role; that is my “title” if you will. The only way I’d become an Autism Mom is if I were diagnosed autistic myself or found out I had traits. But then I’d be an Autistic Mom and a mom with autistic traits. As far as I’m concerned that still wouldn’t make me an Autism Mom.

Autism Mom. Two words put together to create a phrase, a title – and that’s what it is - that I really don’t like. It’s the same thing with Autism Dad and Autism Parent. Capitalized or not, I don’t like them. I don’t like what it stands for and I especially don’t like how it takes the focus off the person who actually is autistic and places it on the parent.

Seriously, whenever I hear that phrase – Autism Mom – the first thing I think of is the parent. I don’t think about the autistic individual(s). My thoughts go directly to the parent who somehow, in some way, by using this phrase has suddenly become more important than the autistic person.

This is wrong, so very wrong. When we talk about autism we need to be talking about the people who live with it. And by that I mean those who live, eat, breath, sleep it every single day. Those who are autistic. Parent’s live with it second hand. That doesn’t give them a right to claim autism as theirs. And I feel this happens when Autism Mom and related phrases are used. To put it plain and simple, they’ve hijacked autism.

I know there are parents who use the phrase and talk about understanding and acceptance and the need for more services, but I still feel when they refer to themselves as Autism Moms, etc. they’re taking the focus off of where it belongs. Using that phrase, that title, has become easy and convenient.

Autism Mom has developed its own identity within the autism community and I feel it’s one that overshadows and distorts what autism is about.

So, I’ll say it again. I’m not an Autism Mom. I’m a mom to an autistic person, and I’m a mom to a person with autistic traits.

What sparked this is I mentioned on my Facebook how the end of spring quarter I saw a bumper sticker that said, “Jenny McCarthy does NOT speak for this Autism Mom”. I thought it was pretty cool and was hoping to meet the person who had it and find out where they got it. But as time has passed I realized that while I like the message I don’t like the last two words.

Making a new start

For about a year and a half J was seeing a great therapist. Then last April it stopped. Actually, we decided to put it on hold because the last several sessions between the two weren't productive. J wouldn't talk to the therapist unless I was in the room and even then J wanted me to do all the talking for him. I couldn't do that and the truth of the matter is it made the sessions real awkward. So the therapist and I decided to put J's therapy on hiatus until fall. He wanted to see how he would do at the new school and through the summer.

I met with him earlier this week to bring him up to date on things and the fact that J still appears to be "stuck". As our conversation went on he more or less confirmed with me what feared I had been doing for the past year or so, being over-protective and over-accommodating of J. I've been so afraid of him getting teased or hurt or taken advantage of or people not understanding him that I've built this bubble around him to keep him safe and out of harm's way. As a result he's become so comfortable with all that I've done. At least that's how it appears to me and to a certain degree I think J thinks so too because of that day when he told me he will not compromise.

I'm this way with J but I'm not with Y. I've pushed her so much to do things and face the world head on while I seem to have done the opposite with J. The therapist told me that has to stop. He told me I have to learn to let go a bit so J can experience those ups and downs of life and formulate his own ideas of how he wants to fit in the world. His therapist believes J will be able to live on his own - though he's convinced J will need constant assistance and accommodations. I don' t know how he can say that now when J is only twelve years old. There's still six more years to go before J turns eighteen and become a legal adult. A lot can happen during that time, and J is already looking at and working on what he can and needs to do for himself in order to achieve his goal. That's an entirely separate post that'll be coming soon.

I look at J and I firmly believe he can achieve his dreams and that he'll be a productive part of society. I also know it has to be on his terms, at his pace and on his own time. I can't force it or rush it, nor can I hold him back. I have to let him experience live to the best of his ability and shape the person he's going to be. What scares me is that means going through experiences that can be painful and he might not fully understand. But then Y did too. Yeah, yeah, she's not autistic (though she has traits) so her experiences are different, but the point is what she went through shaped the person she is today. And she went through some pretty nasty and painful stuff that no one regardless of their neurological makeup should ever experience. I know for J there's the chance of it being harder or worse and so I'll be there to help him but I know I can't keep being over-protective and over-accommodating

And what I mean by over-accommodating is giving him everything he asks for to the point of going above and beyond and not really finding a happy medium or compromise that makes it comfortable for the three of us. Looking back, I can' t help but believe that's what I was doing when I wasn't trying to.

Since being done at Prairie St. John's (though they want him to come back) and talking to his therapist J and I have had a lot of conversations about his future. They've gone very well and he's told me that maybe I have over-accommodated him and have been over-protective. Maybe, he's not sure. I feel I have but the only way to really find out is to make this new start together and watch my brilliant boy grow into a successful young man, in whatever that may be and at the pace that works best for him.

Get over yourself Parent, autism is not about you!

Changing my tone from the last post because of something I've read about and cannot stand. Parents who make autism all about them and what they want, what they need. Making themselves the "oh pity me, look how hard my life is" martyr. My words to them is get over yourself! Autism is not about you and what you want and what you feel you need or deserve! It's about your child! Who is the one that's autistic , or has autism, or however the hell you address it. Your child who lives every single day of their lives being autistic. You don't live life being autistic; you live with it, second hand as the parent. This doesn't make you an expert and it doesn't give you the right to play the martyr. I can't say it enough it isn't about you, the parent, it's about the child.

I can't tell you the number of times I read about all the treatments parents have subjected their child to. And every time I read what the parent wants, what the parent did, what the parent thought or felt or what autism was doing to them. I never read about the child and what that child wanted or did or thought or felt. What I do see about the child is how the parent describes them - as toxic or not human and in many other degrading dehumananizing ways. They quite literally disassociate themselves from their own child and not see them as theirs. This is sad and beyond cruel. I don't understand how parents can do this.

Do these parents have any idea what message they're sending to their children? They're telling them they're not good enough, that they won't be loved enough because they're autistic. They're telling them because their parents see them as flawed they can never accept them. The child is getting the message their parent hates them for who and what they are. What a horrible thing to make a child think and come to believe if such an attitude of hatred persists in their life.

I could never ever do such a thing to J. I could never live with myself if I did or realized I was making him feel such a way. I remember when he told me he was autistic, he didn't "have autism." I used to use People First Language up to that point. He was nine at the time and I asked him if he thought of himself as autistic or having autism. He told me he's autistic. He also told me I didn't know what it was like to be autistic, only he did. I had never thought of autism in a negative way and when he explained it to me in his own way I took a good hard look at myself to see if I had done anything to put my needs and desires before his. Unfortunately, I had, but changed that. I started listening to J more and seeking out blogs of adult autistics. I put J's needs before my own because I fully realized this isn't about me, this is about J.

I wish parents who look on their child with scorn could see that. This isn't about them, it's about their child. It's about learning to accept them for who they are.

All these treatments these kids are put through aren't for the child or to better them, they're for the parent who just can't accept the child they have and want to have the unrealistic perfect child they envisioned themselves having who would go on to achieve grand and great things beyond the normal expectation of any child. These goals the parents have set up for their kids. And that's the thing, these are the parent's goals for their kids, the child's' future they have mapped out for them with no regard to the child at all. They want the child to do all these things and when something happens that they don't their plans for the child is ruined in their eyes.

But again, I say, this isn't about the parent, this is about the child. We all want to see our child grow up and be successful, but it has to be their success, not the parents. I can say this from my own experience growing up. I didn't follow the path my parents set for me and do what they wanted me to do. Because it wasn't what I wanted to do. Now, I don't want to hear about not being autistic or not raising an autistic child. I deal with my own mental health issues - which I don't see autism as - that have been crippling to me in the past. And I'm raising an autistic son. I've learned from my experiences. I'm letting J follow his own path to his goals - which right now is learning to understand why he reacts in certain ways to his emotions and how to control them. Yes, we're seeking therapy but I'm not looking to change him so he fits some design I have for him. And his greater goal is to be either a zookeeper or Lego designer. That's in his future. Right now he's focused, and I'm focused with him, on present goals.

But, it's not about me. It's about him.

So, how is holding a child down for a chelation treatment while they kick and scream and cry for their parents to stop supposed to tell the child their parents loves them? How can that possibly send a message of love? The message it sends is the parents love them but only under certain terms and conditions - after they've gone through a treatment that the parent feels will bring their child to a standard they want and will only accept. This is putting conditions and limitations and restrictions on love for a child and that's not right. That's cruel and selfish and completly unacceptable. What happens to the child if they can't achieve the parent's standard? What message is that sending them? Do the parents ever think about this, what they're doing to their child and how they're making them feel?

Unfortunately, no I don't think they think about that at all or care. After all, it all about them as far as they're concerned. It stopped being about the child longer beforehand. All they know is what it's like for them and they turn it into a problem that they just can't and don't want to deal with. Heaven forbid it doesn't fit into their perfect little bubble of a world. Well, *newsflash*, NOTHING in this world is perfect no matter how hard we want it to be.

So I say again, Get over yourself Parents, Stop playing the martyr. This isn't about you, it's about your child.

Where to go from here

Well, it turns out Prairie St. John's wasn't what J thought it would be. In fact, he said it did nothing for him. He doesn't feel it helped him understand what's causing him to react so strongly about something or to an emotion he's feeling and find a way to deal with and work through it. He feels the only thing he got out of it was a med change which he started there but we've ended up finishing here at home.

We've finished it here at home because J was having a hard time being in PSt.J's program and he was becoming disruptive and aggressive with other patients and staff. So much so that he was sent to the hospital last Friday. PStJ wanted him admitted but the staff at the hospital felt there was no reason to. He had de-escalated and was able to explain what happened that led to his hospital visit. He was fine for the five hours we were there. The staff felt he was just going through a rough patch during the med change and felt he would be fine finishing it at home under PStJ's staff supervision.

That's what we've done and all has been fine. One thing I can say is I saw and was reminded what J was like when his hyperness and impulsiveness isn't under control. Both are very disruptive for him to the point where they cause problems. I witnessed this firsthand for several days before he became stablized on his new medication. Which, btw, is Seroquel. His hyperness and impulsiveness are under control again and he's doing great.

However, now there's a new concern and I'm not sure exactly where this generates from. I'm dealing with a tween who during the past two weeks has become incredibly rigid in his thinking and is refusing to compromise in any way. He's told me he won't compromise anymore and he wants everything to be done his way and for him. Well, to put it plain and simple I can't and won't do that. I have another child to think about here, as well as myself, and we've always found ways to make compromises with things for all of us.

In fact, over the past two weeks I'm looking at the fact I might have compromised for J too much over the past year. I think I might have gone overboard in accommodating him to the point I might have enabled him to act and react of his emotions and situations in very specific ways. I'm not positive about this, but looking back I see how with several things that I accommodated him for to help him deal with something after a while it wasn't enough or good enough anymore. So, I'd add another accommodation. I kept adding them to help him cope with certain things hoping he'd be able to deal with them better, but looking back, he never did. Certain issues and circumstances only got worse. Looking back I think I might have put him in a protective bubble of sorts without realizing it. That wasn't my intention.

And, actually when I look back I can pinpoint when all this started. When he began the summer school program for his previous school. It was the start of the biggest change of his life and he didn't like it. I think instead of helping him through it, like I thought I was, I began trying to shield him from everything, forgetting the world is a rough place. Hell, I struggle through it every day with my own personal mental and health issues - and some days are absolute hell for me. I was so afraid of J struggling that I did various things to try and keep that from happening.

Now yes, what happened at Central was horrible. The autism program there is crap. I've talked to other parents who had serious problems there too. But the things is several of his actions, reactions, and yes, behaviors presented themselves also at 916 (his current school) and at PStJ's. All these reared up when he was in a situation where he had to compromise and he didn't want to. He got angry and aggressive and refused to cooperate. It was during these times that, at 916, he'd go after other students.

PStJ's was working with him on his compromising skills and he didn't like it. I think J became so comfortable with me accommodating him that he doesn't want to change it at all. And when PStJ started working on that he wasn't going to have any of it. And I think that's why he's said he won't compromise at all anymore.

And yet, he said he wanted to understand why he was acting certain ways and how to control them so they don't become worse as he gets older.

J says he's done with PStJ's, and to a certain degree I agree. Looking at everything I don't know if he would benefit from being there. See, the staff wants him to come back once he's stablized on the Seroquel. He is, but he doesn't want to go back, and I'm afraid he won't want to work with the staff.

Now, during all this, I got him enrolled in Fraser Center's "Life Skills Training Program". Fraser's focus is exclusively autism and it has an excellent reputation. The staff there are pretty sure they can help J develop compromising skills - as well as coping strategies, better social skills (he has so sense of boundaries and limits with other people) and skills to help him reach his goals for his future. J is excited to begin this, but then he was excited to begin at PStJ's also. I really don't want to see him become defiant with this program too.

Two things that will be starting is we - the three of us - will start family counseling here at home. We all have to learn now to learn how to compromise properly. Another is it was recommended that I get J involved in a type of play therapy appropriate for his age. It was pointed out to me that J did better with the PStJ therapists when he was able to play with Legos and things like that. I was told that maybe if he's allowed to build and play while in session he can explain better how he feels about things, or tell a story about how he feels with whatever he's playing with. So, I'm waiting to get the resources for that, as well as looking on my own.

A lot has happened the past two weeks. And yet in all this I wonder if I'm doing the right thing. I wonder if all this will help J. It's hard because, like I've said before, I don't want to change him. That's the last thing I want to do. I love him the way he is. But I fear if some "changes" aren't made he'll have a much harder time when he's older.

I'm asking people who read this post to give me an honest opinion about this. I feel we're heading into uncharted territory and I don't want fail my son. But yet, ultimately, I know it has to be about what J wants because it's his life and future.

Am I making any sense?

One more thing. J told me that what he's going through with starting into puberty what he feels hurts him. He said it's not physical but mental and emotional pain. When he's stressed it hurts, when he has to do something he doesn't want to or go through a transition it hurts. This has been on my mind a lot since he told me and I want so badly to understand how this affects him.

An article on autistic adults

My dad emailed me this article today.

http://www.azcentral.com/news/articles/2009/07/12/20090712autism0712.html

It's in the Arizona Republic newspaper. It's called ""Children of Autism Approach Adult World".

It's not a bad article. It discusses autistic adults and how they need a place in the workforce and to be accepted into society. Overall, it's a good and positive piece but there are places where the tone and some of the language used make me cringe.