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Archive for the ‘disabilities’ Category

Last month, Ted’s ipad went missing. Since Dan wasn’t working, we couldn’t replace it, until today. I downloaded his stuff on the new one from the icloud thing, and found THREE VIDEOS by the thief (or child of). PLEASE pass this on. The ipad was Ted’s way of communicating (we have an app called TapSpeak). He’s been lost without it. Even though we replaced it, there was plenty of contact info on the ipad. They could have got it back to is. PLEASE help us find this family. IF you’re in Dubuque especially PLEASE PASS THIS ON. The most recent 3 videos are the kid with the ipad. PLEASE HELP US.

With more digging into the ipad, we found an email address for the person who has it, too.  It was obvious it belonged to a child because of the apps on it. There were also apps that had the word AUTISM in the title.  Lastly, besides the communications software, there were other apps that would indicate that it belonged to someone who had some sort of disability or cognitive problems.  The parents of this kid had to know. They knew enough to turn off FIND MY IPHONE, but not enough to realize I had it automatically sending stuff to icloud.

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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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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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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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Using the word “retarded” casually as an insult is highly offensive. People with developmental delays and other disabilities face many forms of discrimination and abuse, and language like that makes it easier for them to be victimized. Those who use the word not only look stupid, but can really hurt their audience.

“Don’t get retarded with me, answer your phone!”

“Why are you giving me detention, that’s retarded!”

“Those shoes make you look like a retard.”

Day in, and day out, people use the word retarded as an insult. The reality is, every day, people have to live with the medical diagnosis of mental retardation (“Intellectual Disability / Mental,” 2005). They deserve more respect than to be reduced to a disparaging term in the streets, on playgrounds, in offices. They are human beings who are the target of much discrimination, and deserve more respect than what they have been given. To use this word in a derogatory manner can be just as harmful as using the word “gay” as an insult – just ask the mothers of two eleven year old boys how harmful that can be, those two boys in two different states, on two different days, that hung themselves when they were called “gay” over and over again (Blow, 2009).

Every day, people with developmental disabilities are denied many rights and privileges we take for granted. We can choose our chores at home, when we can have visitors or get phone calls. Some in group housing don’t get that luxury, according to Caren Durnst, a supervisor in a group-housing setting. We can chose our own job, and work for a decent wage. Those deemed disabled enough to qualify for certain benefits needed to live independently can only work for limited amounts of money, or they loose their support network; in fact, they aren’t even allowed to have more than meager savings(“SS Resources,” 2009). Those who work in ‘sheltered workshops’ can legally be paid less than minimum wage (Fair Labor Standards Act (FLSA), 2009). They can be put into classrooms isolated from their peers, denied access to classes they might enjoy,and discouraged from real academic pursuits (“Program Criteria: Special,” n.d.). In Bertha, MN, a thirteen year old autistic boy was forbidden by the courts to go to Mass at his local Roman Catholic Church. When his mother got in the car to take him, the county Sheriff met her to tell her that she would be arrested if she took her son to Mass (Pabst, 2008). Perhaps the worst of all, some are denied medical care (U.S. Public Health Service, 2001, p. 28). The American College of Obstetricians and Gynecologists even has guidelines as to under what circumstances you can sterilize a disabled person (“Sterilization of Women”, 2007 p. 2).

Despite all this, many people with developmental disabilities and cognitive difficulties live full and independent lives. They work, they play, they love, they marry (Kaufman, 1988/1999 ). They do what they can despite their intellectual limitations. So what do you mean when you call something retarded? It works hard? It struggles and tries its best to overcome obstacles? If you call someone a retard does that mean they are someone who works hard in school even without the support they need? Probably not.

The current campaign, “Change the Conversation” (The R-word, n.d.), makes us all too aware how much those who are mentally retarded understand what is meant when it is used as an insult. They have a voice, and they are speaking clearly. If anyone uses the excuse that “they” don’t care if it is used as an insult, “they” do. For people without cognitive difficulties why is it so hard to understand how people with MR (mental retardation) feel about it? When you use a word like this, you objectify people. “Retards” aren’t people anymore. They’re objects. They are no longer human (Special Olympics and the Center for Social Development and Education, Gallup Organization, Research and Evaluation Services of Northern Ireland, & Center for Survey Research, n.d.). It builds up, and gets easier and easier to toss those words around. The less important you think it is, the more affected you’ve been by that word. The less important we all think it is, the easier it is to discriminate and abuse those who are developmentally disabled. It’s easier to deny them a seat in a science class, or not give them a chance in the workplace. Why? Because we’ve reduced the to sub-human level, and do not have to treat them like we’d treat a ‘normal’ person. The more the “r-word” is used, the more degraded they are, and the more acceptable it is to treat them like so much garbage.

Using this kind of language is poor English, period. Those who use that word risk the look of looking uneducated, lower class, cruel, and unsophisticated (Bendersky, 2009 ). Studies show that even children look down upon peers who use the word, even if they are not willing to speak out(Harris Interactive, Special Olympics Global Collaborating Center at the University of Massachusetts Boston, & Special Olympics, n.d.). Using those words makes a bad impression. Those words used in the wrong context hurt a lot of people. First of all, the person being called retarded, whether or not they are, knows what the name-caller means by it. Those who are experiencing those disabilities can feel hurt too (The R-word, n.d.) . There is also pain to those who love them, who feel protective of their family and friends. Doesn’t everyone feel protective of those they love? Those that use the word become bullies, picking on those who they perceive as inferior to them. They can only see their privileged world view where the only way to live is as a ‘normal’ person with no disabilities, no problems (Byrne, 2000, pp. 45-72). To them, the only life worth living is one without “being retarded”.

There are plenty of reasons not to use “the R-Word”. Think for a minute of one very simple one. Every time that word is used in front of me, personally, I die a little inside. I am wounded by the words of people who think my son, the light of my life, is a person of less value than anyone else. So please, don’t use words that describe very real people as insults.

References

Bendersky, A. (2009, April 1). That’s retarded. You’re so gay. Is either ok? Message posted to http://hottopics.gay.com/2009/03/thats-retarded-youre-so-gay-is-either-ok.html Blow, C. M. (2009, April 24).

Two little boys. Message posted to http://blow.blogs.nytimes.com/2009/04/24/two-little-boys/

Byrne, P. (2000). Philosophical and ethical problems in mental handicap. Basingstoke, UK: Palgrave Macmillan.

Fair Labor Standards Act (FLSA), 29 U.S.C. § 8 (2009), http://www.dol.gov/elaws/esa/flsa/14c/.

Harris Interactive, Special Olympics Global Collaborating Center at the University of Massachusetts Boston,, & Special Olympics. (n.d.). R-Word campaign [Survey Results]. Retrieved April 23, 2009, from University of Massachusetts, Center for Social Development & Education (CSDE) Web site: http://www.csde.umb.edu/rs_r_word.html

Intellectual disability / mental retardation. (2005, October 29). Developmental disabilities [Article]. Retrieved April 29, 2009, from Department of Health and Human Services, Center for Disease Control and Prevention Web site: http://www.cdc.gov/ncbddd/dd/ddmr.htm

Kaufman, S. Z. (1999). Retarded isn’t stupid, Mom! (2nd ed.). Baltimore: Paul H. Brookes. (Original work published 1988) Pabst, L. (2008, May 19).

After warning, family of autistic teen attends different church. Star Tribune. Retrieved April 29, 2009, from http://www.startribune.com/lifestyle/faith/19059069.html

Program criteria: Special class programs, secondary, and vocational rehabilitation. (n.d.). Self-contained special education classes [Criteria for placement]. Retrieved April 25, 2009, from Newark Public Schools Web site: http://www.nps.k12.nj.us/Special%20Education/Training%20Modules/Spe.%20Ed%20Programs/Self%20Contained%20Classes.htm

The r-word [Campaign to end use of “The R-Word”]. (n.d.). Retrieved April 22, 2009, from The Special Olympics/ Joseph P. Kennedy, Jr. Foundation Web site: http://www.r-word.org/

Special Olympics and the Center for Social Development and Education, Gallup Organization, Research and Evaluation Services of Northern Ireland, & Center for Survey Research. (n.d.). Multinational study of attitudes toward individuals with intellectual disabilities [Research results]. Retrieved April 22, 2009, from Special Olympics Web site: http://info.specialolympics.org/Special+Olympics+Public+Website/English/Initiatives/Research/Attitude_Research/Multinational+Study.htm

SS resources. (2009, April 28). Understanding supplemental security income [Fact Sheet]. Retrieved April 29, 2009, from Social Security Administration Web site: http://www.ssa.gov/ssi/text-resources-ussi.htm

Sterilization of women, including those with mental disabilities [Monograph]. (2007). ACOG Committee Opinion, (Serial No. 371). U.S. Public Health Service. (2001, February).

Closing the gap : a national blueprint to improve the health of persons with mental retardation (D. Alexander, Ed.). Rockville, MD.

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