Monday, September 23, 2013

Allergies for the Older Kids

So I was thinking about Baby Girl's milk allergy and how it affects the skin on her legs (they always feel rough).  Acroboy has similar feeling skin on his legs.  I decided to take his older brother and him into the allergist to see if they too had milk allergies.  Surprise!  No allergies of any sort for Acroboy.  (Not even the oats we have been avoiding for years).  The allergist said Acroboy must have outgrown it.

I was expecting Whirlwind to have a dairy allergy because of some other problems he faces.  Nope!  Tomatoes though.  He is allergic to tomatoes--which makes sense to me because I've noticed for a long time how much more hyper he becomes after eating a tomato product like pizza or spaghetti sauce.  He is not happy about the tomato allergy.

We eat a lot of tomatoes in our diet (tacos, taco soup, spaghetti, lasagna --pretty much any Italian food, Indian food, sandwiches, etc).  I am going to have to make an effort to bring in more tomato free dishes for this boy. 

Wednesday, September 18, 2013

Response to Canadian Neighbors

You may have heard about the mom of an ASD boy, Max, who about a month ago received an anonymous and extremely hateful letter.

I was pretty shocked when I first read about it.  I was also upset, a bit angry and dismayed that someone could write something so cruel.  It also reminded me of how far we have to go in creating awareness and understanding. 

As I thought about this, my anger turned to pity.  Don't get me wrong, I don't condone the letter writer's actions, but I feel pity for her that her ignorance and fear is standing in the way of her getting to know and learn from some amazing people.  I feel sorry for her children who, if they are indeed terrified of Max, learned this attitude from their mother.  I'm sorry that their mother is teaching hate and fear instead of patience and kindness.

I am also sorry to say that while I haven't received a nasty letter telling me to euthanize my children, we have had a few run ins of our own with ignorance. 

My kids are a HUGE blessing to me.  We definitely have our struggles.  (Motivation and controlling  impulses are just two).  My kids have taught me to look below the surface though, because they are so much more than their impulsive behaviors, stimming, and inabilities to pick up on social situations.  They are more than their social gaffes.  My kids have big hearts.  They want to do good things.  They have goals and dreams and they have triumphs and disappointments and tender feelings.

My kids have suffered the indignity of getting so excited some neighborhood boys were inviting them to play basketball, only to get there and have the boys mock and tease them for their inability to catch a basketball pass.  The neighbor boys repeatedly threw the ball at my boys and laughed as it hit them and as my boys got more and more upset.  This happened repeatedly until I realized what was going on and I stepped in.

My boys have been excited to have cousins come to our side of the country, only to be told they wouldn't actually see their cousins that much.  I didn't have the heart to tell them that their female cousins don't feel comfortable around them due to a misunderstanding from the prior year.  (The boys hugged their cousins a few seconds longer than the cousins were comfortable with and the boys didn't pick up on it.  Even though it was a somewhat innocent, the "damage" was done).  We've made huge strides with my family since then, but the "non-visit" proves we still have a long way to go.

We've also recently have had family friends stop talking to us after they were in town and we met up for a day outing.  Acroboy and Whirlwind were having particularly hard time of it, and while I haven't be defriended on Facebook, they haven't responded to any messages from me, and their travel photo album left out all traces of our outing.

I've had stares at restaurants and in lines and glares.  I've had people tell me I need to control my screaming five year old better while I'm trying juggle an also screaming newborn.  I smile politely and explain we are an Autism family, and inside I'm thinking, "Thanks for your concern and for your non-existent offer to help the newborn while I deal with the five-year-old."  At the one place we caught a break, Disney World, we got glares from neurotypical families because we used a pass that allowed my children to wait in a shorter line.  Would they have really rather witnessed a complete sensory meltdown?  Even that small advantage to my kids is going away.


Families like mine and Max's do not think we deserve special treatment.  We are asking for courtesy and kindness and an opportunity for our kids to grow and soar.  We hope our kids will become independent with jobs and that they marry and have the joy of a family.  We hope if there is a problem with something our child(ren), that someone will let us know and we can address it.  I can't fix the problem if I don't know there is a problem.

I've since read Max's mother's response here.  Despite the hurtful letter, she has pretty much expressed the same sentiments as mine (only more eloquently).  She is polite and civil and reminds us all that we ought to be helping one another.

I hope they find the woman who wrote the letter.  I don't hope this so she has to face criminal charges of any kind. I hope this so that she can sit down face to face with Karla or other moms of ASD kids and she can learn to be unafraid.  I want her to have the opportunity to ask questions, to learn of her misconceptions and to get a glimpse into the very unique world of a child with Autism.  I want her to learn of the trials and the joys we face and how she might make things better for all of us all around. 

Honestly, when I think about it--I hope that is something that every neurotypical family does. The world would be a better place.

Am I dreaming too much? 

Sunday, September 1, 2013

Are We Heading Down the Autism Road?

Back in July I wrote how I took BabyGirl into our favorite Autism medical center for her sibling study evaluation.  She excels at gross motor skills (we knew she did), but she is a bit more behind in expressive speech.  It's been over a month, and I've yet to see any real progress with her expressive speech.  (She demonstrates understanding or receptive language much more than she communicates).

We've decided that rather than wait until the 18 month evaluation, we're going to contact the Early Education program in our area and have her evaluated.  I know from our previous experience with Acroboy it can take a while to get the evaluations set up.  By the time I had Acroboy evaluated, he started talking A LOT.  He still had a verbal delay, but it wasn't significant enough to warrant him receiving services.

Baby Girl is non-verbal (Mama, Dada, baba, and uh-oh make up the sum of her vocabulary).  She is also showing more and more pickiness with foods and textures.  I've noticed her getting picky about the temperature of the water when we wash her hands too.  There is a limited range at which we wash, or she starts crying.

She is retreating more and more into herself when she gets overwhelmed.  It reminds me very much of how her oldest brother was.  Back then I thought it was just "cute".

We have the first of the evaluations set up in a couple of weeks.  I am not sure if I am jumping the gun.  Am I worrying unnecessarily?  Friends have regaled me with stories of family members who didn't talk much until they were 3 and then went on the lead "normal" lives.  What if I wait like I did with her brother, will she become verbal and then not qualify because she's not "enough" behind?  It's a tough conundrum for us.  In the end we decided we would start the process and see where it leads.  She may or may not qualify for services.  Either way I'll continue to work with her the best way I know how, and I'll know I've been doing all I can to give my baby the best start possible.