Posts Tagged ‘autism’

Autism Awareness

Wednesday, April 3rd, 2013 by by

It’s Autism Awareness Day. Facebook is covered with images and statements – “I love someone with autism!” “Light it up blue for autism!” “Autism is seeing the world differently!” As a mom with a kid somewhere on the spectrum, I should probably be jumping right in, but none of it feels like it really raises much awareness. We live in a time where, fortunately, you’d have to live under a rock to not know “autism.” Autism isn’t like a number of other conditions out there that are practically unknown. (CMV, anyone?) I’d venture to say it’s reached the same level that breast cancer has for awareness; everyone knows the name and knows we should raise awareness for it, but no one really knows how to help or what it’s like to live with until it affects one of their own.

So today, I’m going to open up a little about the truth of autism in our home. Autism is different for every person and every family, which is what makes it so hard to understand sometimes. In some families, autism shows itself in the form of strong obsessions or extreme disinterest, echoing everyone’s speech or not speaking at all, stim behaviors like spinning or hand flapping or biting or scratching or beating heads against the wall. We walk right down the middle – Danny is neither a high functioning Aspergers child nor a low functioning child with classic Autism. As in all things, he makes his own path.

For us, autism means spending a lot more time at home. Going out with Danny (more…)

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The A Word

Friday, October 19th, 2012 by by

Autism. I’ve studiously avoided the word for years; from about a year and a half to two years old, it’s been on my mind for Danny, but we never made it official. For a while, there was a bit of “maybe it’s just…” going on. Maybe it’s just his hearing loss. Maybe it’s just out parenting early in life because we never knew how well he heard or understood. Maybe it’s just something he’ll outgrow.

I think many parents think these things.

The fact is, it’s a reality for Danny and our family. We recently met with a neurologist who isn’t a big fan of the diagnosis, but he said that most professionals would agree that he’s got it. The fact I’d run into a while ago online, one the neurologist reiterated, is that autism rates are higher than average among CMV kids. At its core, it may not be the same autism as those kids born with it with no trauma or spurring factor, but the results are the same…or as “the same” as any two kids with autism are.

It’s so broad that it really doesn’t explain much.

A part of me wondered if I would react at all when a professional finally (sort of) agreed with our suspicion, confirmed it and made it real. I didn’t. It doesn’t change anything, except I no longer have to dance around it. No more “well, he has autistic tendencies” or “we think he may have autism,” he just has it. It’s no shock; in a way, I’ve known it for years.

I’m still not one of those autism moms that is lovey about it (more…)

Progress

Monday, December 12th, 2011 by by

Daniel has been very busy this last week or so doing some of his Christmas jobs. Last year, he didn’t do anything himself – I wrote out his cards after a long and unfruitful attempt at getting him to help, and I purchased and wrapped presents “from Daniel.”

This year, he took £15 of his own savings from odd bits of pocket money to get presents for his Nanna, Daddy, and me. He decided where he wanted to go (Asda) and chose a calendar for his Nanna and a tin of chocolates for his Daddy from the selection available in store. I had to choose my own chocolates in the end since he’d lost interest by then!

He then “helped” with wrapping those along with his present for my partner (which I gave to him to wrap from my January sales collection) by choosing the paper, tags, and star for each person and writing his name on the tags himself.

I was even more impressed this Wednesday when he wrote out his Christmas cards to all the children in his class. OK, I wrote THEIR names, and I wrote out the envelopes, but Daniel put his name and a kiss and did a Christmas stamp in every single card – for 29 children and 5 teachers. Usually his concentration, especially with writing, is pretty poor, so this is a major breakthrough for him!

He’s really looking forward to his own presents and cards now having put time and energy into the ones he is sending. I’m feeling he’s going to understand and enjoy Christmas more this year than ever before.

It’s been a week of progress in more than one way, too! Reading requests are taking off to the point that I had enough money to treat myself to a couple of albums I’ve wanted forever and not had the money to buy (ironically, including “Progressed” by Take That).

Even better, I have a lesson observation and interview for a long-term teaching assignment next week! I am so happy to be shortlisted. The job market is so competitive these days and it’s so easy to feel like you’re on the career scrap-heap. No matter what the outcome, I am well-prepared and know I will have tried my best; and I know I was good enough to get an interview out of a large field. It’s given me a real boost.

I guess the moral of all this is perseverance. Perseverance makes progress!

Decisions with extra dimensions

Monday, November 21st, 2011 by by

Every decision I make has to be carefully weighed up against Daniel’s autism.

The biggie at the moment is whether or not to try for a baby with my new partner before it is too late – given that I’m 36 now! There are health issues to consider, as well as I have IBS medication I would have to stop taking.

I think Daniel would be ok with it; I spoke to him briefly about a baby brother or sister in the car today, and he seemed quite amenable, though thoughtful, about it.

Even into the future, I feel like decisions are looming over me such as what to do about high school if he isn’t going to cope at that point. As I’m a teacher, homeschooling may be an option, though I would worry about attempting to teach high school maths and science! Even though I haven’t had another baby yet, I can’t help thinking about the fact that Daniel must be provided for with some sort of care plan, residence, and/or job – whatever he is capable of at that point in the future – before Shaun and I are not here anymore, because I wouldn’t want the responsibility falling on an unsuspecting sibling with a right to a life of their own.

And of course, there is always the worry that if I have another child, that child too might suffer from autism or asperger’s. It’s also completely likely that they won’t. Many doctors have said it’s usually genetic, and only half of Daniel’s genes (my side) would affect another baby, as it wouldn’t be with the same partner. However, I cannot trace autism in my family other than Daniel, and besides, I think it’s quite likely his delays and behaviors could have been caused when he suffered lack of oxygen to the brain at birth due to a collapsed lung. But the worry is always there.

Still, I suppose it pays to be prepared, and then whatever goes better than expected is a bonus!

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Senory Issue Support at Theaters

Friday, November 4th, 2011 by by

I was hesitant to write this post in an effort to respect The Older’s privacy. However, when something like this comes along, I think it’s in part my ‘duty’ to share information in the hopes it helps other parents of kids who have sensory issues/Autism/Asperger syndrome.

My son’s school went on a field trip to the Tampa Theater this week. It’s a great place filled with history and independent films, and I’m thrilled the kids get to experience that with the school. I didn’t even think twice when I signed the form for him to go; it never crossed my mind that there would be any issue. Part of that was because I thought they were seeing a regular movie, and part of it was, well, I just didn’t think ahead.

They saw the show Little Monster Tales, and it was loud. Not only that, but there was a class of younger kids there who were screaming, and because The Older’s class was in the back, the sound bounced off the wall. According to his teacher, The Older, who has been diagnosed with Pervasive Developmental Disorder, ended up curled up in a ball with his hands over his ears and looking like he was in physical pain from the noise. Because his brain can’t process senses like other children his age, noises and the like send him into a panic, and he reacts like he is in pain – because he truly is in pain. His teacher, a wonderful person who was also his teacher last year, covered his ears as well, but the real blessing was the class mom who was with them. She recognized what was happening with The Older right away, and she ran out into the lobby and brought back foam earplugs! They weren’t quite as fancy as the ones shown, but they were similar, and he was able to sit through the show; he was able to enjoy the whole experience with his friends with no further issues at all. I am so happy he was able to see everything and not have to leave!

Since this is all new to me, the news that movie theaters even have these available might be well known. However, if even one parent reads this and can help their child enjoy something that they otherwise would have to miss out on, then I had to share what I learned. Because of this I’m going to buy a pair of earplugs so that he has them with him all the time, just in case we go somewhere and are surprised by something, but I’m thrilled to know that movie theaters have these in case I forget!

Summer School

Monday, July 4th, 2011 by by

Danny’s first half of summer school is over, though the kid doesn’t know it yet! He’s got a whole week off, and I don’t know if he’ll know what to do with himself. I’m going to have to keep them busy, I’m sure!

He’s doing very well at school. Drop off can still be questionable sometimes; he doesn’t cry so much as just stall as long as possible going into the classroom many days. The odd day, he’ll head right in and wave goodbye, but more often he tries to go straight to the playground and ignores the need (and requests) to go hang his backpack up first. I’ve been getting a lot of awesome reports of him being “on fire” and having an “awesome day,” though, and he’s doing a lot of good work for them!

I’m seeing some subtle changes in him at home that are probably partly a sign of his progress and partly just him growing up. He’s learned to say the “f” sound, which is adorable as he does it and watches you, waiting for you to do it back. He waves goodbye and says something or other (“ma ma,” “ah aye,” something to that effect) to go with it. He’s gotten better lately at (more…)

Danny and the iPod – Learning Through Play

Monday, May 23rd, 2011 by by

Since the day Danny got his hands on my iPod (aka, the day I finally gave in), Danny has adored the thing. Now, this is not overly strange in any way… Both of my kids are very technologically inclined, and honestly, they both love to play on it. The thing that makes it worth noting with Danny, though, is that it’s almost like a security blanket to him.

At first, it was like my dirty little secret. I mean, when it comes to parenting most kids, as far as I’m concerned, things like the computer, ipod, etc, should be limited. It certainly should be embraced – it’s a part of the technology that defines our society these days – but it shouldn’t be an hours and hours on end kind of thing. Eric self-limits himself even further than we limit him a lot of the time; he is allowed a certain amount of time each evening on the computer, and often he shuts it off halfway through. Danny… Well, Danny would go all day long, probably, if we let him.

The thing about it is, though, is that he’s actually getting something out of it. He carries the iPod around sometimes with the clock running, and instead of doing other sensory seeking stuff like tearing his ears off and rolling around on the floor, he just looks at it now and then. The numbers scrolling by give him whatever it is he needs, and he goes back to playing or whatever else it was he was doing. He won’t be actively engaged with the iPod, but (more…)

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Trick or Treating with an Autistic Child

Friday, November 5th, 2010 by by


So, I’m done asking the question “is he really…” I’m done answering it to. People ask me, almost constantly, “Since he has been diagnosed with 22q deletion, is he *really* autistic?” The quick answer is: We don’t know. He could outgrow the tendencies he is showing, he could learn to control certain behaviors and sensory issues. We don’t know. But, my child has been, for the time, diagnosed with autism. And, he responds very well to the therapy and techniques that are used with autistic children.

The thing about “autism” is that it is almost purely diagnosed based on a set of behaviors. It is not like an illness where certain germs can be tested for, or like an ailment where physical abnormalities like swelling etc can be seen. It is a list of behaviors and mindsets. And my son has those behaviors and mindsets. He is autistic. (more…)

What’s the Deal with Jonah

Wednesday, July 7th, 2010 by by


I was 38 weeks pregnant with Evie when Jonah and I made our way to the county hospital lab. I was emotionally numb from the evaluation we had just left. It was in a fog that I navigated the stroller through the sterile-smelling hallways, only halfway reading the signs that were directing me to our next destination. We were getting too familiar with blue signs and grey lettering telling us which way to go- almost like we aren’t in control of our own paths anymore.

“They said he wasn’t” I whispered, disbelieving, under my breath. “Everyone has said that he wasn’t- he isn’t…” I stopped for a second to ponder which direction to turn. Did we miss it? No, I see the signs ahead LAB. “Should we get a second opinion?… I should get a second opinion..” I rolled the stroller in front of a receptionist’s window and (more…)

Monsters Under Mommy’s Bed

Wednesday, March 31st, 2010 by by

I never really had a problem as a kid with being scared of the dark or monsters in my closet. I did have an awful episode once after watching Nature on snakes and then screaming myself to sleep because I could feel them crawling all over me.

My parents were kind enough to put me in their bed for that one. It was horrific.

But regular old monsters were regulated to reading Calvin and Hobbes with my dad and laughing…nothing I ever considered within my safe little reality.

It’s funny though…how the idea of a “monster under the bed” for a child really kind of stays with you as an adult. When you’re lying in bed, waiting to fall asleep, it’s easy for those “monsters” to creep out and attack you, despite all logical, rational thinking and (more…)

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