Autism Watch: 2007

Posts Tagged ‘church

Next week, dd graduates from 8th grade (a big deal here apparently) and she completes confirmation. Her schedule rivals that of an executive’s right now, and I’m tired of just thinking of getting her everywhere she needs to be, though I am relieved that all the shopping is completed. Now, to choose a bible verse for the ceremony…

Because of the upcoming events, we decided to have a relaxed weekend, one without a lot of plans. We had the pleasure of attending a birthday party for a 98-year-old neighbor, and spent the rest of the time doing things around the house, with the most strenuous being washing the two cars and the truck. How did we get uninterrupted time to do that? Dd took BB out to see Star Trek, and he loved it! Aside from extreme adhd behavior, and a last-minute “I have to go potty NOW” trip five minutes before the movie ended…oh, and the insistence that he had to have sour candy during the movie…he did really well. I think the movie was a bit over his head, resulting in his inability to sit completely still, but he enjoyed it and it was a good time with his sister, so we’ll call it a success. He also played outside during the birthday party, and had no incidents!

I’d be remiss if I didn’t mention a HUGE achievement for him — he played baseball with another family for about an hour, and did great! He’s not a team sports person, yet. Dh tries to get him to play, but he doesn’t respond often. I guess the key is playing with someone else, so now he wants to practice. I can’t tell you how awesome it was to watch him play, with other kids, with a smile on his face. (I did give him a ‘the bat is not a weapon’ speech after, and he did the “Mo-om, I know that” (duh) reply.) Can’t wait to see if he follows through and keeps up the interest!

Recently, we’re in flux a bit about our worship situation, so we didn’t attend yesterday. We’re not sure ds is getting what he needs, yet we weren’t sure how he’d react if we didn’t go, as it’s routine for him — if we are home on Sunday, we go to church. I told him and he sighed in relief. So much for worrying about him reacting if we stop going, which more solidifies my concerns that he’s no longer happy there. Sad but definitely something for us to think about.

Pretty boring blog entry, I know, but sometimes, boring is good, right? Eight more days of school left, and summer is here. He’s got summer camp, an experiment, and I have high hopes he’ll do well. (If not, I’m not out too much money at least.) No VBS this year — dates were changed and it coincides with camp, so he can’t go. Good thing that when I told him, he gave another sigh of relief. One less battle.

I’ll try not to be boring next time. 😉

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Do you? Or don’t you?

And in case I’m not clear, I mean forcing your child to engage in certain social events or activities.

My son was in our church’s Christmas program last night. To say he participated under duress is an understatement. We forced him. He didn’t want to stand and sing, or even pretend to, and he didn’t want to say any lines. Problem was, I did.

I know, you’re thinking “why.” Ten minutes after we arrived last night, I was wondering why, too.

My thoughts were/are that we have to not give up on him in any way, and that we always need to try and provide the same activities neurotypical kids have. If we never make him do things he’s uncomfortable with, will he ever be able to do those things? Of course, there are limitations to where you’d test this theory, but we felt safe with this one. At this point, if I had to decide on next year’s play already, I’d probably say no.

Ds doesn’t take direction well. He wants things his way. He wants routine, sameness, and control. Being in a group activity means he’s going to have to take direction, and he did. Well, he had adults giving needed direction, but I’m not sure he really ‘took’ it. He flashed daggers, shoved away from the group, shoved through the group, argued with a couple kids, and may have told one adult he wanted to kill him. (Thank God, that guy had both a sense of humor and a lot of compassion…and he knew about ds.) He didn’t even make it through the final dress rehearsal/practice. Two minutes before showtime, dh and I were summoned. Ds had another issue with another kid, and it led to a total meltdown. It took dh 20 minutes or so in a quiet room before he was ready to go on-stage, and none too soon — his lines were due in about two minutes. I got him on stage, minus his cap, and he happily said his lines. Total transformation.

Not so fast.

As soon as his lines were done, he started shadowing the child standing in front of him. Every time the boy would move, so would ds. Soon, another adult close by quietly reminded him to stop, which was fine — ds needed to hear that he can’t ruin someone else’s performance and that he’s part of a group — but ds shut down. He moped, dragged, and moved away. It was heartbreaking. I was already nauseaous, it’s painful to watch, and this just made it worse. Then, miraculously, the play was over. Good to go, right?

Ha.

The kids all went to a back room to take off their costumes. Candy was handed out, but when ds didn’t get a ‘big’ candy like the ‘big’ kids (“But I AM big!”) he threw what he was given. That resulted in hysterical crying, and dh carrying him out. We understood his upset and wanted him away from everyone before it got worse, for others and for him. We know he doesn’t want to be seen this way, he hates the stares and whispers, and I hate it as well. So many people came up to us to tell us how good he did, how he at least said his lines, etc. True, true…but nonetheless, it took me a bit to decide if I could eat dinner or not.

I looked through the photos later, and saw his sullen, angry glances. Sure, he may have learned something from this, but how many lessons does it take? How many times do we have to try this? And how often before people start thinking ‘enough, already!’ At what point do the lessons my son learns and the importance/fairness of him participating becomes unfair to others? Or do we continue to ignore that aspect as long as he’s not hurting anyone else? Luckily, the only visible issues last night were not during the show, except for those last few minutes.

I’m really relieved it’s over with. I love children’s performances. I love helping — the laughing, the funny mistakes, the whole organization of it all. But, the stress of trying to get him to go along with the plans? Not priceless.

At least today is the first day of the official Christmas vacation for him, two and a half weeks of him around here, and I’m THRILLED. And no, that’s not sarcasm. He thrives on one-on-one attention, and I had kids so I could be around them. What better time of year than Christmas. Speaking of which, time to go. I need to dig out my gingerbread cookie dough recipe and get that mixed and refrigerated. Tomorrow’s cooking decorating day.

I’m still seeing so much in the press and on the net about Weiner. The articles that agree with his inaccurate and harmful information are frequently agreeing with the theory that parents just want to medicate their kids for their behavior, and all will be good. Thing is, if he knew anything about autism, or if anyone who agreed with him actually did their research, they’d know their is no magic pill for autism. Or is there? If there is, why have I been paying out-of-pocket for therapies? Why am I fighting for services? Why is my son on waiting lists for things that will help him? Heck, sign me up for the ‘cure the behavior’ pill and I’ll take a look.

Oh, that’s right…more misinformation and ridiculous theories or “knowledge” based on other misinformation…probably based on more misinformation.

There is no pill/medication for autism. Yes, there are some medications that may help — for example, when your child is pullling out his fingernails, hurting himself or others seriously, or scraping his face every five minutes, to the point of blood, we can try Risperdal or Clonidine…and we can hope it makes a difference. If they are older and/or suicidal, and therapies aren’t working, we can hope an available medication may work. But no pill out there…NO pill…actually ‘fixes’ autism or its behaviors enough for any parent to chase it down. ADHD may be helped by a medication, but ADHD is NOT autism. Some autistic kids are ADHD, but that’s just a by-product. If you know so much, get your diagnoses correct.

Non-verbal kids’ parents probably wish there was a pill to help their child speak. I’d venture to guess many parents of autistic children wish there was something as easy as a pill, but the fact remains, a pill is a band-aid, and a pill won’t fix things permanently.

Mind boggling that we’re ‘after medication.’ Buy a clue, people. If Weiner had said “99% of <insert race/sexual orientation/gender/descriptive word> were all <insert derogatory word>,” the general public would be all over it. But why not, autistic children have been kicked out of school/class, thrown off of airplanes, legally restricted from church, and told to leave restaurants. Easy targets I suppose. And illegal if it was anyone else. Hell in a handbasket if it continues…and people wonder why parents of autistic children speak up so much. Wouldn’t you, if your rights and your child’s rights were disappearing by the second??

Has St. Joseph’s catholic church in Bertha, Minn. read that part of the bible? “Let the little children come to me, and do not hinder them..” Anyone at St. Joseph’s familiar with this bible verse? Or the Catholic credo that you are supposed to come to mass? Oh, I get it — more mandates by humans, “Go to church, just not MY church.”

It’s a sad day in the autism community, or any community, when you can be kicked out of church for a disability. I thought that was illegal? Maybe I don’t know my ADA regulations well enough, or maybe the church doesn’t, but so far, they appear to be getting away with it.

A church is place people go to help grow their faith. Sure, we can read our bibles at home but we can’t minister to ourselves the way a priest/pastor can. This family, just like everyone else and maybe moreso, deserves the comfort and ministry of a church, yet they are being denied it because their son’s severe autism behaviors are just too much for the church to handle. One blog I read said that the boy, a 13 year old boy but still a child, has urinary incontinence. It also said that he ran out of church so quickly one day that he knocked an elderly person over. (Wow, maybe no children should be allowed in church then — I see neurotypical children barreling into people left and right every Sunday.) I also read somewhere that the boy flails his arms and legs, and this was deemed dangerous, and that he spits, though the family supposedly said that part isn’t true. In the end, I don’t know the real story — I don’t know what he does, and what he doesn’t do, but I can clearly see what the church didn’t do, and that’s help this family. Maybe they really did offer a different place in church for him to hear the sermon, maybe not, and maybe the place they offered was unsatisfactory. Who knows. But in the end, a church got a restraining order to keep a severely disabled 13 year old boy out. Does that not give everyone pause? If not, it should!

Discriminating is illegal. Sure, keeping other parishioners safe is definitely a job of the church but there has to be a middle ground here. I have so many thoughts on this, I can’t cover them all without rambling but I want to know why major autism groups aren’t behind this family. Where is the ACLU or a famous attorney when it comes to a disabled white boy? Where is the press, and why aren’t they up in arms? Why aren’t all of us?

I know, truly, that there is another side to this story. But I also know that even in the most accepting of churches, in the kindliest of congregations, even a ‘high functioning’ autistic child can not always be treated as he should. And these are children we’re talking about, children of families who are using their faith to get through a tribulation. Needy families. Disabled people. Shutting doors to them can’t be how churches are supposed to act. I don’t know what else to say, but I hope that this church and those who complained about the boy are ashamed of themselves.


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