Tuesday, March 3, 2015

To Test or Not to Test?

Genetic Testing-Something many parents of kids on the spectrum are faced with. To know or not to know?

Why? Why not? Even as I write this my brain is starting to hurt. It's a simple blood test, right? No major procedure, not much pain. But why would I want to know? What will they test him for? What reasons do I have to even think about genetic testing?

Since our oldest son, Coby, is also on the spectrum but very high functioning, we had an inkling that Liam may be on the spectrum as well. We knew the signs to look for. Unfortunately we were right. Don't get me wrong-I love my kids to the moon and back; they are my heart! But I also don't want them to go through a life time of struggles. We didn't do any genetic testing with Coby. We had no reason to. But Liam is a bit more complex.

Liam has very different issues than Coby had, though they both have very high IQs and academically do very very well. But Liam had reflux as a baby and toddler, which lead to food aversion. To this day he gags at most foods and has certain foods that he'll eat and will not try anything new. He has social issues which is a regular part of autism, whatever regular is-coupled with sensory issues, stimming, etc. But then he is also having trouble toilet training and we think he just does not feel when he goes, which makes it difficult for him to successfully sit and go on the potty. He also just got glasses, which, at age four, is pretty early. Lastly, his ears stick out some, and one of his ears has an interesting fold in it. The Neurologist suggested we test for Fragile X in particular and other genetic anomalies in general. And I've resisted. For a while I just wanted to bury my head in the sand and not know.

The more I think about it, though, the more important it is for Liam to get the genetic testing. There are some conditions which later on in life carry more medical issues which would be beneficial to know about. Also, we would want to know what the chances are of both Liam and Coby of passing anything on to their own kids someday. So much to consider! But it's just a simple blood test, right? Followed by about 6 weeks of waiting. So for the benefit of my kiddos....it is time.

Tuesday, January 13, 2015


Being with Liam at home every day is great! It does, however, mean that I don't necessarily see progress on a daily basis.  People who see him only every once in a while notice the progress a lot more. This morning, however, I received a gift of sorts. Liam's occupational therapist sent me a video she took of him exactly a year ago today. In the video he sings the ABC song. I then recorded him singing the same song this morning. What a difference! So then I went to my YouTube account and found an old video of Liam singing Twinkle Twinkle Little Star. I had him sing it again this morning. Here are the links to the four videos. Watch and see how amazing my little guy is! :)

This is the video the OT took a year ago:

This is the one I took this morning:

This is Twinkle Twinkle from when Liam was about 3:

And this is from this morning:

Friday, January 9, 2015

Routine, Routine, Routine

There are things in life we can all be sure of, right? We all know the sun will rise in the east and set in the west. We all know that chocolate makes everything ok...and we all know that eventually we will all die.

But guess what? There are things in my life I can be sure of because they occur EVERY SINGLE DAY in the same way, same order. Welcome to life with Autism.

I can be sure that every morning Liam will come into our bedroom. If it's the weekend and Brian is home, he will wake Brian up first. "Good morning, daddy! Did you have a good sleep? I want to watch __________ (insert favorite movie or show of the week/month. This week it's been "Monster's Inc.") If it's a weekday and I'm the only one there, it will be pretty much the same thing. Liam comes in, turns off my humidifier, turns on the lights, and says good morning. He also insists, very emphatically, that I put my glasses on. He will then push me over to Brian's side of the bed because he has to have my pillows, on my side. If I try to close my eyes, even for a few more minutes, I'm shaken awake by a loud "WAKE UP, MOMMY!" Every. Single. Day.

Another thing I can be sure of is milk and breakfast. Milk comes first, in a bottle of course. It doesn't matter that Liam is 4.5, or that his teeth are going to be crooked. He wants his milk and he wants it in a bottle. Breakfast is next, and it's ALWAYS toast with cream cheese, cut into four triangles.

I know for a fact that Liam will ask me what I am doing about 30 times- even though he is right there and sees what I'm doing. And I also know that he'll yell " could you call the doooooogggggg!!!" about a million times, even though poor Roxie is nowhere near him.

I can be sure that every night we'll snuggle, laugh, and argue about how many stories daddy or I will read to him. And I can be sure that I'll get a sweet hug, kiss, and "I love you."

The above are just a few examples of the routines we have every day. There are so many more! But you know what? They keep me grounded. And funny enough, as annoying as they can sometimes be, when routines get broken it can be a clear sign that something isn't right with my sweet boy, who sometimes still has a difficult time expressing himself.

Routines are good for all of us, I think. Hopefully most of us are able to stray from the routine without massive meltdowns, but having a schedule and routine to follow is a nice way to start and end my day. 

Tuesday, January 6, 2015

Old Year Conclusions, New Years Resolutions

I've been doing a lot of thinking lately.  Our family has a lot going on,  and for better or worse, there are lessons to be learned all around. So I have come to some conclusions about the past year, and also some resolutions for the new year.

So as far as conclusions, here goes:

Friends will come and go, but family will stay and always be there for you. Some friends are always there, some are only there when it's convenient for them.  I have learned to accept that and let it go.

Seeking help when you need it is absolutely a life-saver.  After years of suffering from extreme anxiety and self-medicating just to get by, I finally got the help of a psychiatrist and a therapist. No, I'm not embarrassed to admit it! I'm a new person! I've started taking Lexapro, a great med for anxiety, and am seeing an awesome therapist regularly.  This has changed my life, and from the feedback I've gotten, my family likes me better!

My kids, Liam especially, will develop at his own pace and not an iota quicker. I have learned that comparing him to both other kids in general, and his older brother in particular, is dangerous and well, stupid.

Leggings. I love leggings. That is all!

So here is a short list of resolutions:

I will be happy whenever I possibly can, and will try very hard to not let my happiness be contingent upon others' happiness.

I will continue to accept my amazing boys for who they are, and not try to make them into something they are not.

I will spend less time on my iPad and phone, and more time with my family and friends.

I think those are pretty good for now! You all can help remind me of this path when I start to lose track!

Thursday, January 1, 2015

Happy New Year!

So I won't say the reason I haven't blogged in over a year is that my laptop isn't working. I will say that getting a keyboard for my iPad really helped motivate me to start blogging again! Since it'll be incredibly hard to summarize the last year in detail, I'll give the highlights.

We went to Israel in November of 2013 for Coby's Bar Mitzvah.  It was an amazing experience that we will all remember for the rest of our lives.  When we got back, my stepfather was diagnosed with cancer. After a difficult battle he passed away in June of 2014. It was a devastating time which we are still trying to recover from.  Meanwhile, the kids have been doing fantastically.  Coby is in 8th grade and getting ready to audition for the NC School of the Arts in French Horn! This means he'll be at a boarding school 2 hours away. We are all so excited for him, but I honestly dread his going away because I'll miss him so much! But more on that later. And Liam is thriving and talking and being more and more social every day. Now we just need to get him to potty train and we'll be golden. But more on that later too!

So that about summarizes our year, and we are all looking forward to 2015! Happy New Year!!!!!

Monday, October 14, 2013

Vacation Vacation Vacation...

As much as I love being a mom and have truly enjoyed being a stay-at-home-mom so far, going away with Brian was nice! I never understood parents who pride themselves on never ever leaving their kids-as if they deserve a medal for martyrdom. I know some parents who never leave their kids even for a couple of hours, let alone 5 days like Brian and I just did. Now I will admit that having my parents here to help is a huge factor in us feeling comfortable leaving the kids. But we have regular babysitters as well for date nights or special occasions. The truth is that every parent needs some time for themselves, and time with each other, to reconnect and maintain your sanity. I believe that I am a better parent when I am well-rested and happy. 

So after five days away in Seattle (my new favorite city), Brian and I came back to very happy kids. Sure, they missed us (some), but they LOVED being with Safta and Saba (grandma and grandpa.) We came back to a report of ZERO tantrums from the little one. I believe it, too! Whenever he does tantrum and I can't get him out of it, what do I do? I facetime my mom and she is able to work her magic and calm Liam down. I sometimes need an ego boost after, but it's worth having the calm kid! 

As I type this, the "calm kid," who is supposed to be napping, is sitting up in bed (he never ever gets out of bed without permission) singing at the top of his lungs and it's so darn cute!!!! So he didn't nap today. But I got my 30 minutes of sort of relaxation in. Time to get him up, I suppose! 

Thursday, October 3, 2013

I'm a Grownup?? Really??

I know...it's a silly question coming from a 36 year old mother of 2. But the reality is that I haven't felt like a grownup, not much anyways. Yes, I have that autism thing to deal with but really, for the past 12, almost 13 years, I got to play, all day, every day! When Coby was first born, I got to stay home and play with him. When I went back to work once he turned 3, I worked as a Pre-K teaching assistant, and still got to play every day, at work, then at home with my boys. Now I'm home again, and I get to hang out with Liam, get down on the floor and play, go outside, sing, dance, and be silly. I'm loving every minute.

But then it hits me. We are getting ready to go on a trip of a lifetime. We're going to Israel with 15 family members, to celebrate Coby's Bar Mitzvah. This is a right of passage. It's one of the most important days of my oldest son's life, a day which he has been preparing for for nearly a year. The next that will be as/more important will be his wedding day.  And as I sit and think about the amazing, talented, funny, brilliant, loving, and handsome man my son has become, I blush with pride. But really...he did all the hard work. I just had the pleasure of watching, observing, helping him along on his journey. 

So yeah, I guess having a son who is about to be Bar Mitzvah'd makes me a grownup, huh? But that's ok. I'll keep on having fun, playing, being silly, and being....mom. It's what keeps us young.