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Thursday, April 22, 2010

Making tough decisions

Lately I've been realizing there is just so much I can do in life, and sometimes I have to just preserve my sanity by not doing things I just feel like I can't do. I won't get into all the details, but I had made plans to do something for a friend, and just felt like I'd hit a wall and couldn't take doing it---it would have involved a long car trip and a weekend away and I knew it would be hell on wheels with Janey upset the whole weekend and me exhausted (I was sick on and off for a month) and I just drew the line. I am not sure if it was the right thing to do, as I know I hurt the friend very much, but I am not going to be a good mother to Janey if I am not able to function. It is hard as I know that no-one without a child like Janey really, REALLY gets it! (Thanks for being out there, Michelle!) Even days she seems happy and cheery and sweet, it can all turn in a second. The picture here is from today---we went into the city to a free concert by There Might Be Giants. Janey enjoyed the concert overall---she jumped up and down non-stop and didn't cry, but I had to hold her hand EVERY second as if we let go even for a second, she bolted into the huge crowd and someone had to run as fast as possible to grab her. She's a fast runner. And I was on edge every second, hoping she would stay in a good mood, not freak out, not get lost, not ruin everyone's day. I can't say it was enjoyable for me. But probably no-one there would have guessed that---I am not going to be grouchy at all times and not smile and remind everyone how hard my life is, and they can't read my mind, so I think sometimes since I am the one responsible for her and no-one else ultimately (when Tony isn't there), it is just impossible for them to really, really understand. Actually, Janey has been great lately a lot of the time. She actually sat through TWO meals out and allowed us to enjoy our meals. But when I say she's been great lately, I edit out the at least hour or two each day probably she spends crying, either off and on or non-stop. And I edit out all the things we don't do or have to do to keep her happy---all the times the boys don't get attention, or we don't go someplace we'd like to, or I am just vigilent making sure she isn't running away or eating things that aren't food or exploring the contents of her diaper or taking off her shoes and socks outside or taking toys from other kids or so on and so on and so on. I sound like one big run-on complaint here, but I decided when I started this blog that here was my place to vent, because so much of the time I am concealing how I'm really feeling.

Anyway, after all that rambling, I worry I've really lost a close friend by drawing the line about what I felt I could do. I don't want to lose friends, but I guess my family has to come first, and because Janey is the one in the family that has the most needs and needs me most, I can say Janey has to come first. And to be able to be there for Janey, sometimes I have to put my own needs first. And that's the hardest part.

Friday, April 2, 2010

Autism Awareness Day

It's Autism Awareness Day, and I am thinking about how little awareness really does for anyone. It's great to be aware autism exists, but hey, I'm aware lots of things exist, and that doesn't do a bit of good to people dealing with them. Fire exists, cancer exists, poisonous snakes exist, floods exist....and so on. What I wish---there was a Help People Dealing with Autism Day. Here's some ideas....

1. Offer to watch a child with autism. It's not as hard as you think. Their parents do it almost every hour of the day. Yes, they might cry. Yes, they might show strange behaviors. Yes, it might not be all fun and games. But it might be---our kids can be a lot of fun sometimes. And even if it isn't, think about how much just a few hours of freedom means to the parents. It might save a marriage or save someone's sanity.

2. Really get to know a child with autism. If you are around them, and I'm talking here not babysitting, but with the parents around, sit down with them. Play with them. Don't do this trying to teach them things, or quizzing them to see if they know things. Follow THEIR lead. If they want to hear the same book 50 times, read it to them 50 times. You aren't their therapist or teacher---you can just be their friend.

3. Do something for the sibling of a child with autism. They, like the parents, live with autism all the time, but unlike the parents, they didn't choose to have the child. They love their siblings with all their might, but it's not an easy life for them either.

4. Ask a parents of an autistic child what supplies/books/materials/treats their child might really like. Little things can be so helpful---you don't have to spend much to get something that might be a huge treat for the child, if it's something they are really into.

5. Support public funds being spent on SUPPORT for autistic people---after school funds, recreational programs, housing for adults, respite care and much more.

6. Say something nice about the autistic child. Don't act like they are a tragedy. They aren't. Every parent likes to hear nice things about their kids.

7. Don't,don't, don't,don't, don't offer us information about a "cure". You are not telling us anything we haven't already thought about, and it's hurtful to many of us.

8. Be a friend to the parent---just a regular old friend. Nothing refreshes a parent like doing something fun with a friend.

9. Include the child in events like birthdays or other parties, but understand if the parent decides it won't work out. Most of us parents are very sensitive to how a child will really do at various events, and we will always appreciate the invitation, but we might not accept.

10. Don't assume our child will have special abilities, or that our child is a genius inside, or the child is slow, or anything about the child's abilities. Ask the parents if you are close with them. All kids have special abilities in their own way, but most children with autism are developmentally delayed. We parents know that. We can offer the best assessment of what our child is capable of.

11. If you see a child in public that you think is autistic, and they are having a meltdown, don't stare, or comment, or look disapproving. If there is a simple way you can help, you can try to, or you can just ignore the whole scene, or you can give the parent a sympathetic smile. We've all been there, even with our "normal" kids.

12. Know how any help at all is EXTREMELY appreciated by the parents. You can make a huge difference in their life by helping.

And if you got this far, thanks for caring enough to read this!