Friday, April 22, 2011

A Face of Autism

As some of you are aware (and others may not be aware), this month is Autism Awareness Month (April 2nd was National Autism Awareness Day). There are several events taking place online and offline (like the Light it Up Blue Campaign). One great online event is being hosted through SITS.

SITS (The Secret to Success is Support) has been a community I've been involved in since it started. Although I'm not nearly as involved as I once was, I still head on over to the blog (or Blog Frog or Facebook or Twitter) to put my two cents in and contribute via comments. This is a great community for other bloggers; I've met some really wonderful women this way (Tiffany, Lula, Mama Kat, Jen, and Angie - among many others). They host great blogging conferences (that I will forever be trying to win a ticket for) and have wonderful forums on their website - spotlight, women on the move, learn, and food & lifestyle.

Jen, from Buried with Children (one of my favorite blogs!), is hosting a segment called "Faces of Autism." It's a very touching sentiment that friends of mine care about raising awareness for this disorder that affects 1 in 110 children and 1 in 70 boys. Read more about the "Faces of Autism" from Amanda's post, Sunday, Jean, and Jessica's post...

For such a wide-spread disorder, autism (and other pervasive developmental disorders under the umbrella) is so unknown. Perhaps the wide range of symptoms and behaviors on the spectrum allow for so many misconceptions.  
I thought I would stick with the format that SITS was using to help you see into my little guy's face of autism.

What is a typical day like for you?
Moose wakes up around 6-6:30 most days. He goes to school Monday - Thursday so I get up and get him breakfast (cereal usually). He usually eats seconds (and would continue to eat if I'd let him) of a banana (although he'd prefer more cereal). Then he plays with cars and/or listens to music ("When We Were Young" by The Killers is a favorite - thank you Guitar Hero). We may read a book or two, it just depends on how scattered my brain is that morning (I'm not a morning person!). I wake his little brother around 7:40 in order to shuffle us out the door in time for school at 8:00am. I walk Moose in to school and help him hang his coat/backpack up. He gives me a kiss and hug - although he has to be focused on me or else he'll forget we've done that and will cry when I leave.
On non-school mornings, we really don't have much of a routine (except on Sundays when we go to church). We may have errands to run but if it's nice we'll head to a park (on not nice days we'll read books, play, and/or watch movies). The park is my favorite place. It's where he fits in best. Moose isn't really into playing WITH other kids (although he's improved a lot on that front since starting school this semester); he's more of a parallel player. But at the park, most kids just play parallel (meaning beside other kids). He loves to be around other kids; he'll run after them in a tag-a-long position and just smile and have a grand ol' time.
After school, we either play on the playground or to the public gymnasium to play until lunch. He loves when we play "I'm gonna getcha" (basically I run after the boys and tickle them). We head home for lunch and he'll play on his Guitar Hero guitar or with cars until nap time. I know most 3-year-olds (almost 4) have given up naps, but Moose likes his sleep. He will usually sleep from 1-3 or 4. About once every few weeks, he won't nap, so I know it won't last much longer (I'll enjoy the quiet for now).
After nap, the boys usually watch a tv show (Super Why is popular today at the house) or play with cars or trains (do you notice we play much cars?). Then Big A comes home!! We have supper (or they do; I generally hit the gym at this time) and bathtime. Then bedtime. Then it starts all over again!

Are your kids in school? 
Moose started school at our local public school this semester after we moved. His class is a peer mentored special needs classroom. Basically that means most of the kids have IEPs (individualized education plans) while a few select ones get picked out of a lottery of non-IEP kids. It's a very good classroom - his teacher and paraprofessionals are FANTASTIC! Right now there is a 4 to about 10 ratio (teachers:students). 1 teacher, 2 paraprofessionals, 1 student teacher. They work on academic things but for Moose, the real goal of preschool is socialization and speech therapy. He works with a speech therapist 4x a week for 15 minutes a day. I really need to talk to his SPT just to see what all they're working on; I've been more focused on his time in the preschool but need to add a joint focus back to his speech. I do also work on his speech at home using techniques acquired from his previous SPT.
My other son, Squirt, is not in school. He's just a baby yet (yes, I realize that 21 months is not much of a baby but shush).

Is there a part of the day that is more challenging than others?
I don't really think there's a time of the day that's more challenging. For Moose it's mostly transitions that can be hard. But if you give him a heads up: 5 more minutes, 2 more times on the slide, or something to that affect, he does well. I've also made up a visual schedule for him with index cards, so he knows what's coming next. He's not strict with routine which is a blessing to me because it gives us freedom to do various things each day (go shopping, go to the park, stay inside, read books, watch a movie, eat different things). On that note, I would say (in retrospect) that getting ready for school and leaving the house is most difficult. Perhaps because we have a certain time he needs to be there; the rest of our day is so laid-back, the time limit puts a stress on me. But it's not bad because I try to be early to things rather than late.

Tell us what is your biggest challenge in raising a child with autism?
Once I wrapped my head around how high functioning my son is, a lot of the stress associated with him being autistic faded. I know my son is smart, I know that he's learning really good skills at school to help him socialize (which is one of his biggest deficits), and I know that he is an overall great kid.
I have a few challenges with him, however. One being his speech - sometimes he doesn't have the words (or I can't understand the words to express) himself. Last night he wanted to sing, "nice Betsy," and I had no idea what he was talking about (CJ Once Upon a Rhyme - "Naughty Betsy" apparently). It's frustrating not to understand your own child. It's a challenge to discipline because sometimes he just doesn't understand what I want him to do - not that he tries to be disobedient. For instance, he's been very sassy lately; saying the opposite of whatever I tell him. I don't know if he's just being a brat or if he just is trying out opposites? Hard to say.
My other challenge is spending enough time with my younger son, Squirt. Squirt sometimes falls short on the attention because I spend a lot of time with Moose. It's gotten better now that Moose is in school because I have 3 hours uninterrupted (mostly) to spend with little brother. But last night when I was trying to figure out the song, Squirt kept shoving a book in my face. "Hold on, I need to help Moose" - I hate having to put my baby on the back burner, but I've come to realize that I do that very often (I think part of it is because I had bonding issues with Squirt when he was newborn...I think it creeps up on me still). I just need to adapt and sometimes make Moose wait his turn (and I do this, I truly do, I just realize more often it's little brother waits). It's good for Moose, too, he has my patience (which can be very lacking). I don't think this problem is unique to having an autistic son, though; I think when you have more than 1 child, sometimes someone is left waiting (can you tell I'm a middle child myself??).

What do you want people to know about autism?
1) I want people to realize that just because they know someone (who knows someone who knows someone) with autism/Asperger's, doesn't mean they know my son. My son is unique. He doesn't have many of the stereotypical challenges/symptoms of an autistic child. And neither do many other kids on the spectrum! They all have their own quirks and difficulties! Don't put them in this little box, thinking that they're all the same. They aren't - no more than you are like everyone else.

2) When my son is having a meltdown, tantrum, or is just plain crying, please let me handle it - whether you're a family member or a friend. Don't try to talk to him or comfort him (or say, let so-and-so help him). He doesn't want you or anyone else, he doesn't want to talk to you. He wants me and he wants a hug. I'm sorry that probably hurts your feelings (I know it hurts his dad's feelings sometimes too). I didn't ask to be the only boo-boo kisser, but I am. And it's stressful when you try to help - which sounds awful but if left to sort it out (5-10 minutes), things will go back to peaceful quicker. If you really want to help when these incidents occur (and it doesn't happen often; I'm actually adding this post to my original after reading the first SITS post on "Faces of Autism" again), please help me by entertaining Squirt for those 5-10 minutes. And if I say, "I got it," trust that I do. 

3) Also, autism is a disorder under the umbrella of PDD (pervasive developmental disorders). You can look above at the graphic I found. There are other disorders under this umbrella. They are each on "the spectrum," if you will. They are not the same disorders. Asperger's is NOT a higher functioning form of autism. Autism is NOT a higher functioning form of Rett's or PDD-NOS. There are both high and low functioning children within each category (hence, the spectrum). It hurts my feelings when people say that one of these is higher functioning than the other because my son may have autism but that does not mean he's stupid or low functioning or weird or crazy. My son is a high functioning child with autism disorder - he's smart, funny, affectionate, loyal, and a big ol' sweetheart!

4) There is a wonderful article written on SFGate about "How to be a Friend to an Autism Mom" - I want everyone to read this article! It's very poignant and has some great common sense ways to be sensitive to a mom (or dad) who is going through what can be a very trying time in their lives.

Thanks Jen and the SITS community for hosting "Faces of Autism." It's been wonderful for me to read about other moms who may not be going through the same things exactly as me (who is?) but that I now share in a community with.


Softball mom said...

Thank you. I now it's hard and I keep trying to understand. Sometimes you have to remind me and I'm sorry if you feel you where not heard. I love you

Karen V. said...

I completely understand what you are saying in this post. My son has autism - it is mild but he engages in a lot of echolalia (repeating phrases from books and TV). He dances and plays and is a very happy child, mostly. He also has his moments of meltdown when only I can soothe him (and this is hard on us moms because it is an intense burden to absorb like a sponge- it goes out of them and we become shock absorbers). Your sons are beautiful. Glad to have found you! :)

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