Monthly Archives: April 2013

Possible ASD Link with Placenta

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I read this article today.  Out of the most recent studies I have heard of or read about that involves prenatal care of brand new babies, this one seems the most intriguing to me (The others I personally dismiss because I had 2 pregnancies that were treated the same way in regards to vitamins, dopplers, and ultrasounds).  Maybe my doctor will take a closer peek for this next delivery…..hmmm……

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One Year Later

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It’s pretty weird to think that today it has been a full year since the educational diagnosis.  Like I’ve said before, it really didn’t change anything at the time.  We expected the diagnosis.  We had already been working on things and trying new tactics because of EI.  But then the EI stopped about a week or so later (because of his 3rd birthday).  So that was a little weird.  But, we kept moving right along as normal and pretty much ignored that anything had happened til school started in August.

My husband and I were just talking recently about if we think things are really that different from where we were a year ago.  I was inclined to say no.  But he was able to list many many things that have progressed or improved.  Maybe I’m just “too close” to the project.  Of course, I agreed with the things he was saying, but I really wasn’t able to come up with it on my own.  Here are some great progressions in the last 365 days:

  • much more talking/vocabulary/labeling/sentences/requesting with words, especially in the last few weeks.  I can just give a “look” now when he only uses one word, and he will automatically rephrase in the form of a full sentence/question.
  • much less rigid.  Any changes to routine used to throw him off or send him into a tailspin (i.e. leaving fun places, having to go certain places, not getting something he wants right away).  The best example is going somewhere like the park.  He used to get super-pissed to leave.  But now, complies right away or initiates leaving himself.  
  • along with being less rigid, he’s also able to adapt to several routines.  It took a long time to get used to school (which is obviously SO different from home), but he has done so well.  They have even changed the way they do things a few times this year because of more and more students joining, and he has gone with the flow every time. 

So, there have been changes for the better, which I need to remind myself of.  It’s very easy to get so caught up in daily life anyway, so I have to remember to enjoy these victories, no matter how teeny.  I also have to remind myself that each of these improvements have taken TIME.

We had his IEP meeting yesterday and are so happy with the goals laid out for next school year.  Everyone who works with him had lots of positives to share and we know will work diligently to get him as ready as possible for kindergarten.  Thank goodness we have another year with all of this strong support!!  We were also really excited to learn that based on his progress, their recommendation was to stick with his same teacher.  I wouldn’t agree with that in older grades, but for right now, it is absolutely the best decision.  Good plans are in place which we hope will really set him up for great successes this last month of school and next school year.

Emotion #12: Worry

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I had a nice piece of my morning filled with worry today.  Something was just “off” when the little guy got up this morning.  He didn’t have his usual spunk, wanted to lay in our bed for a bit, and asked to drink WATER instead of milk (gasp!).  But, he pepped up a little bit, so we got ready for school like always.  He was happy to ride in the car and be on our way.

However, when it was drop off time, he was not having it.  He refused to get out of the car, which meant I had to climb to the back of the van and basically drag him out.  He was crying, I was trying to calm him, and his class’ aide was trying to help get him in tune with their daily routine.  I finally had to pick him up to get him to stop crying.  And he did.  Briefly.  He wanted me to go in with him, which was obviously not going to happen, so I set him down and the crying resumed.  Since I knew for sure that he wanted me to go in, I just said goodbye and drove away, windows down, listening to my baby crying.  😦

I couldn’t fully leave, so I did a quick loop and “hid” among other cars in the lot.  I watched as not 1 but 3 other adults from the school came out to try and help.  I could still hear him crying from as far away as I was, and just kept willing him with ESP to get it together.  It took several minutes, and I’m sure LOTS of talk about what they would be doing inside, but he finally got up and went in with the teachers.  It was at that time I was starting to get upset myself, and the director of the program totally peeped me out and gave me a thumbs up, signaling that things were on the up and up.

But of course, I’m a mom and I worry.  While on the phone with my husband, I managed a full crying breakdown about how sad it was to drive away and not be able to stay and help, and the worry about how his school day would go from this point.

So….I worried.  For the next solid hour.  My phone rang and I immediately recognized the school’s phone number.  Luckily, my worry was put to rest by his teacher kindly calling to tell me that he had completely recovered and was happily going about the regular day with the rest of his class.  She said he’d even been greeted by a classmate with a hug AND he hugged back!  Such a relief!  We were once again reminded of how lucky we are for him to be in an environment with such a caring and hardworking staff!

Emotion #11: Pride

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This is more about me than it is my son, and my own pride for a job well done.  As summer quickly approaches and we get closer to being out of school with no support services, we have been thinking a lot about what we will be doing to keep up (and hopefully expand!) on skills learned this year.  After attending the local Autism Expo a few weeks back, I came home with dozens of flyers and handouts on autism and ABA treatment centers I didn’t even know existed.  That was decently encouraging, knowing that there actually are places in the area that offer services.  I had no idea.

I contacted a few places to see what kinds of programs were available, the skills we were hoping to keep intact, and their costs, and waited.  Here is the response I got back that was most interesting:

I wanted to respond to your email. Sorry for not responding sooner, but I must say I’ve read your email over and over again and it got me thinking this is something I’ve always wanted to do!  With that said, I spoke with our Autism Coordinator and our Summer Camp Manager and we are very interested in offering this type of service this summer.  We provide ABA therapy services, and we could offer this to you as part of insurance billable services in an ABA format.  Or provide this service as a summer enrichment program.  Our two gals are working very hard to put something together and share with you and others.  We would limit the session sizes to no more than 7 to 9 kids.

I’ll be in touch later this week, and thanks so much for sharing.  This is why we started our summer camp program nine years ago, because parents were asking.

Now, while I didn’t know at the time what they’d come up with, I was glad to know that the closest possible location was able to offer something.  Turns out that this organization CREATED a program for preschool-aged kids that was specifically aligned with all of the skills I had referenced.  Wow.  Just because I asked.

This in itself was enough for us to be happy.  Close, affordable, covers a good chunk of the summer weeks off, newer facility….the positives could go on.  But, at this point, we are the only people signed up.  They said they’d need at least 3 to make it functional.  So, in a mostly selfish (but slightly altruistic for other desperate parents) move, I passed on flyers of the summer program and their upcoming open house to my son’s teacher/school.  The director of the school stopped me yesterday to thank me for passing on that information, saying that they are always asked for programs for kids 3-5.  She finished with “Way to advocate for your child!”

I really hadn’t thought of it that way, but I guess I did!  It makes me proud that I was able to do something to make a difference. All we were thinking about was the best way to keep our child engaged this summer while out of school and about to welcome a 3rd child.  Bottom line: It never hurts to ask.

Now, while we have no idea how our son will respond to this program, the instructor(s), a new routine, etc…that’s still ok for now because at least we have made plans to try something!

Dipping Our Toes in the GF Water

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Oh my, am I overwhelmed!  We’ve been toying with the idea of GFCF (Gluten Free, Casein Free) for a while.  We have pretty much determined that we don’t think a casein/dairy elimination would make a huge difference, but that the GF would be easier to try out first.  

“Easy” obviously needed to be in quotes.  I started by making a list of all the items my son actually does eat that contain gluten.  Next, I started some light researching to see if I could find substitutes for all of those favorite things.  So far, I haven’t found good subs for all of them, which makes me a tad nervous.

I found GF food lists online for stores like Trader Joe’s and Whole Foods, and thought I should actually set foot in those stores to see what’s what.  Holy smokes!  This is going to be a crazy expensive transition.  I definitely need to search out more and even check our “regular” stores since so many do offer specialty items now.  But for the meantime, I grabbed a few things to have the kids test out.  We’ll see how it all goes!

Why We (I) Chose Not to Share

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This has been heavily debated in our house over the last year.  I have always felt very strongly about not sharing our son’s autism diagnosis.  And it’s not for any one cut and dry reason.  There are so many factors that go into each and every day of being an autism parent, and so just flat out telling people seemed like it would have way more outcomes that I felt ready to handle.

First and foremost, I don’t feel that it’s necessarily anyone’s business.  I know that sounds snippy and defensive, but it’s true.  I mean, does every single person who ever gets some kind of medical diagnosis or illness immediately share with the world?  No.  If you had genital warts, are you going to broadcast that?  Doubt it.  There’s definitely a right to medical privacy.  With that said, I know that this isn’t the same, and that having autism creeps into daily life, so it automatically becomes more relevant to share sometimes.

The second big thing, and this encompasses pretty much every other reason, is fear.  I am afraid of a lot of things in regards to this life.  If people know, will they judge my son?  Will they judge him more than maybe they already do because they know he has some delays/shortcomings/doesn’t act the way many kids his age act?  Will he ever get invited to things (because my kids are already not included in a lot of playdates/parties that I know my other friends have had)?  What if he freaks out in a social setting and people don’t understand?  That “what if?” list could go on for miles….or days….whichever seems longer.

I am scared of people judging my child.  Yes, he is different.  No, he doesn’t talk as much as an almost 4 year old should, and he’s not going to necessarily react when someone says hi to him or asks him a question that most kids could answer easily.  He needs more time to process before he speaks, he usually only speaks when he really cares about something, and if he doesn’t know someone, he’s highly unlikely to branch out.  But he’s incredibly smart, funny, caring, and affectionate.  I’m afraid once this label is “out there” that people will miss all of the wonderful things because they are so focused on the autism.

I’m also afraid of people judging me.  I’m sure there will be a lot of judgmental thoughts or comments behind my back about my not sharing something like this for over a year, but honestly it doesn’t matter, because I did what I felt was best for my family.  Parents judge other parents whether they like to admit it or not.  I’m guilty of it as well.  It starts immediately when a baby is born and comparisons are made to any and every other baby that’s ever lived.  Parents take pride on their kids hitting life milestones (especially before others’ kids who are close in age)….I get it.  However, I do not take criticism well, and especially do not care for parenting advice.  There are only two other people I know (one my age, one with grown children) who have a child with autism that could possibly know what this life is like.  And even our situations are completely different from each other.  So advice has to go out the window unless it was asked for.  My child isn’t a typically developing child, so milestones, benchmarks and other things that parents pride themselves on are totally skewed for us.

My last large fear is the unknown.  There is so much that isn’t known about autism and there’s so much that the general population doesn’t know about autism that it makes it that much scarier for parents.  I have spent the last year devouring books and articles, trying ideas, programs or activities, following up with my son’s teachers and therapists, but that’s just how we do things.  I have been researching and I still have so much to learn, so how am I supposed to help people who have never been exposed to this understand all of the ins and outs?  Scary.

This probably makes me sound like I live every day in constant, paralyzing fear, which is really not the case, but these are the things I think about.  Not all the time, but certainly if a new behavior starts, or we see any kind of backslide in progress made.  I don’t live under a rock, but I am and will continue to be incredibly protective of my son and family.

My wonderful husband has let me take the lead on all things related to our son, his education, therapies, home activities, and has gone along with my wishes.  But even 10 years in the education world didn’t make me slightly educated on this until I had to be.  I think when people hear “Autism Awareness” they think, “yeah, I’m aware it exists.”  But there’s SO much more going on that unless you are forced to face it, you’d probably never have any idea.  Here are the big things we KNOW about autism (that really barely scratches the surface):

  • 1 in 88 children are diagnosed with autism.
  • 1 in 54 for boys.
  • if you already have one autistic child, the chances that a subsequent child will also be on the spectrum is greatly increased.  As high as about 25%.  This study from 2011 concluded that if it’s a boy, it could be a 1 in 4 chance.  A girl around 1 in 9 (Makes things a little extra frightening when you’re 6 months pregnant with a baby, doesn’t it?).
  • A new study shows that there’s a 1 in 50 prevalence among school-aged children.
  • Diagnosing can happen long before age 2, whereas in the past, a lot of things like ASD or ADHD didn’t get diagnosed til kids were school age.
  • If you’ve met one child with autism, you’ve met ONE child with autism.  Each and every case is SO different and they really can’t be compared.

And here are the things we KNOW about our son:

  • He is not broken.  He processes differently and likes different things than kids his age.
  • He is not a label.  He’s a little kid.  Everyone has challenges, but his just might be a little more noticeable to others.
  • If he is in an overwhelming situation, he might get upset and resort to crying, having what looks like a tantrum, cover his ears, and/or need to leave right away.  This is called sensory overload and happens easily with kids on the spectrum because they can be much more sensitive or not sensitive enough to sensory input.  That makes things easy, right?
  • He DOES make eye contact if he’s interested and he DOES give hugs, kisses, and seek out people he wants to be around.
  • He probably won’t talk to people who try to initiate conversations with him.  He is a very deliberate speaker and seems to know exactly how much (or how little talking) he can get away with to get his point across.
  • He is incredibly smart and seems like he may be a whiz with numbers.  He has known all of his letter sounds for months, recognizes some words already.  He can figure out how to get into pretty much anything/escape from anywhere.  He’s unbelievably resourceful when it comes to getting what he wants.
  • Bottom line: he is HAPPY.  He may have occasional meltdowns and lots of challenges ahead, but my baby is a really happy little kid.  And while we hope for progress and big gains and lessening this burden that he’ll have for his whole life, if he is happy, that’s what matters the most.  He may not openly say “I love you” to us, but we feel it 100 times over when he comes up and says “10 kisses, Momma?”  or something like it.