Tag Archives: autism

Essential Non-Apps for the Special Needs Parent

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Non-Apps?  What?

I like to think of them as the things you do with your kids, away from technology, that will make your life easier (and more fun).  Wouldn’t that be the definition of a non-app?

I recently wrote about an A-ha moment when expressing to The Boy how miserable meltdowns made the rest of us feel helped him to see that being cooperative made the people he loves happy, which is his greatest desire.  If he didn’t have that connection with me, he wouldn’t care. Here are some things that we do that help me connect with my child, which in the long run is my best defense against meltdowns, attitude, whining, etc.

1.  Take walks together.  My kid isn’t all that athletic.  OK, he isn’t athletic at all.  So to get him to get outside and be active is a tough thing when there isn’t a pool or the ocean nearby.  We take a walk almost daily, depending on the weather.  It is usually just a block or two, but it is free from distraction and we have some good talks about the big and the little things.

2.  We cuddle, and smush each other.  My son is 10, and some may think “too old” for this, but he benefits from the deep pressure, and it helps us connect.  He “wres-tles” (pronouncing the “t”) with The Man, which is way more manly, but has the same benefits.  I told him I had to “tackle” the kitchen today, and he said, “Go for the legs!”

3.  Read together.  Every year, we have a reading log sent home, and I am sure the expectation is that The Boy reads to me, but I often read to him.  He is a good reader.  He gets practice all day long at school, and I want to model good, natural reading to him, plus it’s a treat.  He can lay there listening (hopefully getting sleepy), and absorb common inflection and pacing while cuddling next to me.

4.  Being silly together.  I am lucky.  The Boy has an incredible sense of humor.  He loves jokes and word games.  Having private jokes together is another way to connect.

5.  Encouraging his talents.  Some obsessions are a little hard to deal with (like the summer he had to wear the same green shirt every day).  But as he has gotten older, most of his obsessions have become a little more useful.  Writing comics, knowing about every version of Windows that has ever come out, and being able to identify car makes and models even at night are easier to encourage; By not trying to constantly steer him away from the things he loves, I am validating that they have worth and value, and could lead to greater things.

What do you do to connect with your child?  Have you seen the benefits?  Tell us about it.

Reader Highlight: Katrina

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Katrina, who has commented here, is a blogging buddy of mine in our 31 Days Blog Challenge.  I’ve been following her for a little while, and she writes really well about being a special needs mom.  Her post, “The Truth About Being the Perfect Special Needs Parent” is one of her best.

In this post, she writes about the constant feeling of failure, like she isn’t being everything she can be for her kids.

I know this feeling.

Twice this summer, The Boy has had such magnificent, long-lasting meltdowns, that I was the one who ended up pacing the floors, unsure of what to do, unable to pull anything from my bag of tricks because it was completely empty.  I was the one moved to tears because I was tired, emotionally spent, and couldn’t take it for one more second.  I was the one who felt like such an astounding failure.

Katrina ends her post by writing about how important it is to lean on others, accept support, and let others be strong for us, even when it is the last thing we want to do.

I am lucky to have The Man, mind-reader that he is, who (during the second meltdown, as I was pacing, and probably looking like a kicked puppy) said, “You have done all you can do.  There is nothing left.  You are not a failure.”

I urge you to go read Kat’s blog, katscafe.org.  She gives a beautifully written voice to us special needs parents.

Hey Autism Community: Enough Already!

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I am always saddened by the divisive nature of the autism community.  It seems that we parents need to pick sides on plenty of issues, or be ridiculed, or even better “educated” by those who hold differing viewpoints.   For or against vaccines?    Autism Speaks?  Medication?  Jenny McCarthy?  Chelation?  We are even supposed to pick sides on whether the “Trip to Holland” allegory is touching or insulting.

Autism Awareness

Autism Awareness (Photo credit: Wikipedia)

When The Boy was first diagnosed (at age 5), I was handed a brochure, and told to contact the Autism Society of America.  And that was it.  I obviously needed more support than that, and looked to the Internet to join a group in which I could participate to the extent that I wanted to on any given day.  I joined a yahoo group of autism parents, and thought, “This will surely help.”  I couldn’t have been more wrong.  I was confused by all of the differing opinions on things I had never even heard about, and saw actual arguments unfold, in this group of adults whose supposed sole reason for existing was support.  I did not remain a member long.

I think we do our children a great disservice by not recognizing that just like autism is a spectrum disorder, the treatments, causes, documentation, and people attempting to assist us are all a part of a larger spectrum, as well.  There is no one treatment, no one cause, and no one group that can satisfy all of our needs.  If you think that, you are shutting the door to so many other possibilities for your child.

We must trust ourselves to do what is right by our children, as no one knows them as well as we do.  But we must not abuse each other in the process, as no one knows what we go through each day better than another parent of a child with autism.  We must agree to disagree so that we can move forward, creating better treatments, finding causes, and building better organizations for our community.  The divisive nature we have shown thus far is quite possibly holding our cause back, and it will continue to do so, unless we make a change now in how we treat each other.

Me-Time: Free Hour

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English: A Glass of Tea. Français : Une tasse ...

English: A Glass of Tea. Français : Une tasse de thé en verre. (Photo credit: Wikipedia)

In a recent post, I lamented that I had not pre-planned how I should spend my time when The Boy was camping with Fantastic Babysitter.  So I’ve been thinking about some ways I could spend a free hour…

  • Take a 15 minute bike ride (weather permitting)
  • Go shopping (or browsing) for girly underwear
  • Take a nap
  • Crank the music up and dance around the house
  • Sort through some toys to donate
  • Go to the bookstore
  • Go to a café, get a drink or a snack, and read
  • Take my camera somewhere and take some pictures

What would you do if you had a free hour to yourself?

Doctor Visit

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After our less-than-successful dentist visit last week, The Boy and I both had anxiety over today’s doctor appointment.  The obsession with being done by a certain time popped up again, and I had to explain in detail three times that we would likely not be done by 3:46PM, as there was a lot of waiting involved with a doctor appointment.  Each time, he seemed even more anxious. I was expecting to be there for at least an hour and a half, maybe longer, and I was envisioning another meltdown.

We went a bit early because we missed our appointment last summer.  I called to tell them I would be 10 maybe 15 minutes late, and whoever I spoke to on the phone was pretty pedantic with me, repeatedly telling me how important it was to be on time, and that they would have to reschedule our appointment.  I was furious.  Today, I was not going to take the chance of being a minute late, so we arrived about 20 minutes early.

Ideally, you shouldn’t do this, as this is more time for anxiety to fester, but I kept him busy with games of slappy, a new app on my phone, and plenty of cuddles (which must look pretty weird to others, this tall, lanky boy on my lap, but I really don’t give a flying fig – whatever it takes to dispel my son’s anxiety is what I will do).

Wonder of wonders, they were on time.  Took us right in, and the nurse who did the prelim stuff was a PRO.  She made a game out of everything, and The Boy was having fun.  At the doctor’s.

The doctor came in, and she was quick and efficient, answering my questions, and allaying his fears all at once.  And when she was done, The Boy said anxiously, “What time is it?”  I looked at my phone, and it was 3:34PM!  We zipped out of there, sucker in hand, and were home by 3:44PM.

We even discussed how our next two visits would include “pokes”, his biggest fear when going to the doctor.  By the end of the conversation, he was telling me the reasons why “getting pokes” was important, and how brave he would be.

They were such pros.  HE was such a pro. And I am very, very happy.

(Photo attribution: By Bart Everson (Flickr: Doctor’s Office) [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons)