Where We're Going and Where We've Been

Well, my beautiful little boy celebrated his third birthday this past weekend, and now, in this past hour of quiet while the kids are napping, I've had some time to reflect on where this past year has taken us.  I'm creating this blog for special needs parents and those that love and support them. 

Some of you reading this may be aware that it's Autism Awareness month and what most of you don't know (and what I haven't totally put out there yet,) but might have inferred is that my son has Autism.  There, I said it. How it all began is kind of a whirlwind, but I want to tell our story and I want people to know that if you are going through it, you are not alone.

Last year, at the age of two, J was not speaking, and by not speaking, I mean that he wasn't really even able to say 'mom' or 'dad.'  As he was developing from about 15 months on, I noticed some differences in him, and looking back, I notice even clearer things, even earlier, but it wasn't anything that set off the alarms, just more of a 'well, that's peculiar.'  I was reassured by pediatricians, until about 20 months when they finally gave me the referral to speech therapy and early intervention.  Our speech therapist (with an autism interest) noticed a few subtle things that I didn't even notice and suggested we have him evaluated for autism.  What???  My sweet little boy....great eater, great sleeper, totally mellow and charming, he couldn't have autism, no way, no how.  We waited two months for that appointment.

In June, I was eight months pregnant with J2.  We sat in a room with the child pscyhologist for three hours while she observed J's skills, his play, his eye contact, his interactions.  I won't ever forget sitting in those chairs, my boy on my lap, doing some thing where he was intently observing a raisin in front of his face instead of eating it like he was supposed to.  J was diagnosed with PDD-NOS, essentially atypical autism.  She recommended 20 hours a week of ABA therapy, speech therapy, occupation therapy, and a children's playgroup.  One week later, the Regional Center was at our house, writing goals, setting up ABA therapy, giving me a hundred consent forms, and taking medical histories.

I did (and to an extent still do) have to educate and explain to family members that what J has is autism, and although he is not as severely affected as he could be, it is an impairment that will affect him for life.  I am ok with it, I have accepted it, and for the most part, I have a ton of support, but sometimes it is hard to help people see something for face value.  And sometimes it is even harder to hear a dismissive "J will be fine, you are being ridiculous."

Two weeks later, I had Juliana by planned c-section.

I was discharged from the hospital after 48 hours because I was doing well enough and wanted to normalize things as much as possible for Jake.  Within two weeks of being home, we started ABA therapy and...HE LOVED IT!  Juliana was small enough that she would sleep in her swing while we spent three hours with Jake in his room learning to make eye contact, to point, to sit, to request things....things typical kids just pick up without anyone having to sit down and teach them.  He loved to learn (and still does!) and it has been truly amazing to watch his confidence, along with his skills soar.

I don't think I ever had time to process it, so there were very few times that I felt sadness.  I'm a fixer, and well, I was/am determined to do whatever I can to make J the best he can be.  I remember feeling grateful for what I did have, a kid that could walk, smile, sit up, laugh...not everyone gets that.  We ask for and want to be moms, and we get what we get, but in the end we...get to be moms. I do remember being sad at the park, watching kids come up to him and he would just look through them, get stuck going over the drawbridge over and over again, only go down one slide over and over again...not saying a word or really even looking for us the entire time.  There are kids that ask us why he doesn't talk (he has other strengths and he's still working on it), or why he only likes to look at wheels roll instead of riding on things...I answer as best I can...I don't know, it's just what he likes.  I remember being sad when K was afraid that J would never throw a ball with him, should we set up a special needs trust, would he ever be independent, would he ever talk, would he be happy???

In August, we got orders to Corpus Christi, but the week before K was to go down to look for housing, they were yanked and we were told we would be sent to Virginia Beach were more services were available.  We had about a month and a half to find somewhere to live, determine how we ever going to get there, and figure out how to set up therapies on the other side of the US.  We moved in mid-October and things went fairly smoothly.

Holidays passed uneventfully and services were set up here, our pace picked back up, and J2 began to join in the fun.  Up to this point, I have only really talked about J1, but J2 is developing right on track and it is totally amazing to watch the differences in her development versus J1.  She is cute, funny, a drama queen, and completely and totally typical.  Neither is bad or good, they are just different.

I've been so changed on this journey that I've decided to change my career path and this fall, just finished my first class to become a BCaBA.  There are so many kids that aren't nearly as lucky as my little guy as far as availability of services go, and I want to help...for free.  I think every kid can be reached in some way and life can be better with the right help...I am living that proof.

As I look back, I remember my little boy's 2nd birthday where he didn't want to put his fingers in his cake and he spent most of his time slamming cabinets and doors until the hinges had to be tightened, preferring to roll his cars back and forth and watch the wheels spin rather than play with us.  One year later, I watched my guy blow out his birthday candle, wear his birthday hat, say 'Cheese' for the camera and tell himself Happy Birthday.  He knows his letters, numbers (completely obsessed with a phone calculator and any technology really), colors, and shapes...and he can throw a ball (and 'kind of' catch it) with his dad.  He still loves to roll his cars, but he would much rather get his hands on that cake.  I know he will have his challenges in life, but I CANNOT WAIT to see what he will become.  For today (and most days), Life is good and there is always hope.

Don't be afraid to ask questions, don't be afraid to teach your child that other children have different strengths and weaknesses, don't discourage your child from asking questions, don't be afraid to be friends, disabilities aren't contagious and you might learn something truly amazing about yourself and/or your child.