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Archive for the ‘kids’ Category

Grover

Image via Wikipedia

One of the first apps I got on my son’s iPad was something I wanted for myself. The Monster at the End of This Book was one of my favorite books growing up.  When I saw it was at the iPad store, and it still had Grover, and not Elmo (which they had when my daughter was the age for this), I had to download it!

It keeps true to story, and is interactive in a seamless, appropriate manner.  It encourages the child to be involved in the story, in subtle ways. If they still don’t get what to do on a page, Grover will hint, building up the hints until the work is done.  He does it in a way, though, that suits the story. “Whatever you do, don’t touch that. Not that corner over there. That will make the page turn. You don’t want to turn the page!” Things like that, and maybe a bit of a flicker or flash to show where the child should touch.

My son is completely non-verbal, and can’t really read much at all.  He’s never been interested in reading, either.  He’ll look at I Spy books, or flip through something with a character he likes, but not much more than that.  After a while, though, Ted would read along with the book, running his finger under each word as it was said. Each word comes on the page one at a time as Grover says it, and he’s really starting to learn the relationship between what is said and what the word looks like. That interaction is probably helping him read more than the constant drilling we’ve done over the years in school, in therapy, and in the home.  He reads it every night before going to bed.  He also is engaged with it more than most other apps, without perseverating on it, reading it over and over for hours on end.  It’s also made a great reward for his educators and his therapists, because he will work for enough stars to have time with this app.

I’ve seen a number of children’s e-books, and apps based on children’s books. This is probably our favorite, and save for a handful of others, one of the better crafted ones. You can tell that not only did the software developers know what they were doing, educators and other professionals who know about development of literacy skills and children were involved. All the little touches not only make this app more enjoyable, but are a great way to help an emerging reader.

This award-winning app is $3.99 at the Apple App  store.

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We finally got Ted an iPad, primarily for use as an AAC device, but we knew there were other apps out there that might be useful.  We’ve found autism related apps, educational apps, some really fun apps for rewards, and lots of communication apps.  We also found a fantastic case for it, too!

It’s a shame that insurance does not cover these. An AAC device starts at around 3k.  An iPad with a good case, good AAC software, and some other apps? About 1k.  But the insurance would rather pay 3k and up, because those devices are for communication only.  Heaven forbid someone has something that can be used for things other than the intended purpose. They’d rather throw money away. No wonder premiums are so high.  Insurance companies will not use common sense when it comes to deciding what to pay, and what not to pay.

I hope to be reviewing some of the apps we’re using.  The whole experience is a real game changer. It’s made an impressive difference in my son’s life.

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If you’re a parent with a child on the spectrum, you’ve probably responded to the same annoying remarks and questions a thousand times. Here’s a handy list of responses that…you’ll probably never use out loud (but are fun to imagine using)!

via Top 10 snappy answers to annoying comments about autism | Autism Support Network.

I need to memorize these…

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I made this video today, based on actual conversations over the years.

http://www.xtranormal.com/site_media/players/jwplayer.swfhttp://www.xtranormal.com/site_media/players/embedded-xnl-stats.swf

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I posted this on Facebook after watching my wall explode with opinions all over the place, very heated. Just wanted my opinion out there. This just happens to be a day that my husband is working on the Memorial downtown. I want to say that when we took my kids down there once when he was working on another site down there, fixing it, rebuilding one of the damaged buildings not too long after 9/11. My son was a bit concerned, because what was happening, what was that big hole in the ground? I told him what happened that people like his dad were rebuilding it, and making things better. I pointed to the workers on the building, fixing it, making it whole again.

So here’s what I had to say on FB:

I am somewhat bemused that as Facebook is exploding with Muslim Mosque hysteria, my husband is at this moment building the memorial to the victims of 9/11. Put your money where your mouth is, and help REBUILD our nation, instead of tearing each other down. I think his actually being in the dirt and heat and sweating does more honor to the victims and our nation than whining about a building expanding blocks away. Ask why the site is STILL not finished. Where is the glory? The honor? Instead, there are squabbles like filthy animals in the muck. Is THAT the America you want to be?

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My son started Camp Bee A Friend this week. This camp pairs off children on the autism spectrum with their typically developing peers, sharing the camp experience together. It’s not about therapy, academics, things like that, it is camp. Real camp with camp activities. Fishing and swimming and crafts and lunch and songs and games and sports and all the typical day camp stuff — something that kids on the spectrum, particularly ones like mine, don’t really get to experience.

Now, one of my fears with Ted is that he’d be alone when we were gone. That the only people who would be with him would be obligated to. Family members, and people who work with him. Maybe a roommate in an apartment or group home. It’s one of the things that makes me sad, the thought my son may never have a partner, a family, a social life. He’s still non verbal, and he doesn’t really notice other people a lot. He doesn’t interact, usually. And since there are a lot of things he doesn’t understand, what could he bring to the table, friendship-wise? This breaks my heart on a regular basis. I try not to think about it, because it makes me want to die inside.

Well, when he got on the bus to go to camp, another kid came by. He looked at the open doors, looked over the seats, and said, “I want to sit next to Ted!” I smiled, I made a pleasant remark to one of the staff members standing there (as well as continued to discuss how Ted doesn’t eat lunch) and left.

And then proceeded to cry the entire drive home.

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Sick

Does it sound wrong for a mom to want her child to be ill?

If he was sick, then there would be a reason for what’s going on now. The crying, the screaming, the agitation, the misery, the sheer hopeless attitude he has right now.

If he isn’t sick, then it’s that random autism who knows what the hell is wrong now, and then it is back to specialists again. Psychiatrists and psychologists and developmental pediatricians and behaviorists and neurologists and it just goes to “I guess it’s the autism”. Which isn’t much of an answer at all, it might as well be, “I guess it’s because the sun is hot and water is wet and it is Sunday.”

So I hope he has a bug. Nothing bad, just maybe an upset stomach or stuffed nose or sore throat or something that will go away, and he’ll be back to his usual happy self again. Of course, since he is ‘non verbal’, I don’t know what hurts. His head, his heart, his eyes, his nose, his throat, his tummy, his ears, who knows?

No one WANTS their child sick, of course, but in our case, it beats the alternative.

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Dear Ma,
I’m sorry when we talk I only ask for more stuff,
I’m sorry I don’t tell you how much I love you enough.
I’m sorry I don’t call when I plan to come home late,
I’m sorry I take it out on you, when I’m not feeling great.
I’m sorry I’m so lazy, it couldnt’ hurt to do another chore,
I’m sorry that although you give me all you can, I always ask for more.
I’m sorry.

But,
Thank you for putting up with me and my bratty attitude,
Thanks for understanding and asking what’s wrong when I’m in a terrible mood.
Thanks for being so very strong when dad’s a thousand miles away,
Thanks for asking “How was school?” at the end of every day.
Thanks for suffering through child labor in a hospital for hours,
Thanks for paying the gas, electric, & water bill — it’s nice to have hot showers. [:
Thank you.

And,
I love you even though we sometimes fight and argue,
I love you cause I need you and life wouldn’t be the same without you.
I love you cause I can tell you everything, you’re my very best friend,
I loved you when I was a little baby, and I’ll still love you ’til the end.
I love you, cause Ma, without you, I wouldn’t even be here.
I love you not just on Mother’s Day but every day of every year.
I love ya!

Happy Mother’s Day.

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Since last year’s annual meeting with the Department of Human Services Case Management, the terminology has changed for one of the services my son gets.

In the past, he was on the “MR Waiver”.  MR = Mental Retardation Waiver. In other words, it was medicaid eligibility based not on income, but on his diagnosis, and all the support services that comes with it.  (They also have a Brain Injury Waiver, an Ill and Handicapped Child Waiver, and others.)

He now has the “ID Waiver” which stands for intellectual disability. This, to me, has less of a stigma. It also is more hopeful, I think.  It also should open up services for those who have significant difficulties but score higher on IQ tests.  Before, your child had to score low on standardized tests.  This hopefully will open the door to more people who need services getting what they need.

So even the government understands the issues around using the word ‘retarded’.  Now if only more people could be sensitive about it, too.

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I read today about the Roman Catholic church denying First Communion to disabled, as policy, when I was looking up the story of the Roman Catholic Parish that got a judge to ban a family from attending Mass — to the point where a sheriff was waiting outside the home to arrest a family if they tried to attend.

I compared this to my own small Quaker worship group, which has been very inviting to my seven year old, non verbal child with PDD-NOS.

It makes me wonder what other policies are out there. A faith that insists that you understand the host is the body of Christ is going to be less inclined to give a child communion. In the case of the child denied, he had ‘oral defensiveness’ and could put the host in his mouth, but his father had to finish it. (My own son was unable to eat from birth — so it is a matter of medicine, not being ‘difficult’.) What would a different church do? I know of another child who is facing a possibility of being barred from his first communion for his disabilities, involving his ability to cope with large crowds. What about Bar Mitzvahs? Are those only for those who can read, memorize, perform in front of others?

As our children are out of institutions, and in our communities, our faiths need to decide what role they will ‘allow’ our children to have in their churches, temples, meetinghouses, places of worship.

Understand, though, as parents, if we feel that you are rejecting our children for their disabilities, we may very well reject you. It makes me sad to know that this is ok, and perhaps even desirable with some religions. But we’re not going away. Our children aren’t locked up any more, and we want them to be full members of our communities.

Will our religions step up to the plate? Or will they turn their backs on us.

I’m glad my group of Friends stepped up. I’m sad to read about others (primarily the Catholic Church) that said no. These people need to be members of the faith community, not just recipients of social services from them. (But then, as members of the community, they may not have much to donate, if they can’t work. However, Catholic Charities and the like DO make money off the government offering various services to the disabled.)

When it comes to communion, I can understand not taking it because you’re not in a state of grace, or whatever (I, personally will not take whereas other ‘lapsed (Roman) Catholics will), because that is a religious barrier, one that has to do with you at that moment in time. But when you are taking people who may be born with an inability to ever do it, or who for whatever reason have to stop later on, for medical reasons, then that isn’t very fair, and to me, not very loving. Does God care to what extent you can vocalize the meaning of the act to you? Or does God know your heart, and approve?

I would go so far as to say it is morally wrong to deny someone communion for those reasons, as you are taking God’s most vulnerable and denying them Him on that level. Do we, as “able bodied” adults have a responsibility to make sure that others partake in His rituals as much as possible? I think so.

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