Parenting A Special Needs Child...Challenging, But Oh, So Rewarding!

Fourteen years ago last month I became a mom. Hard to believe! This revelation has sparked me to write again, after more than two months of no blogging.  I love to blog, but always seem to forget to do it!

Andrew at 10 months

Here's a picture of our cute little guy in December of 1997. Life was so awesome! A beautiful, healthy boy. He (literally) never cried. Andrew was so sweet and SO EASY to take care of. Dan and I actually had the audacity to think, "what is everyone complaining about? Parenting is easy!" HA! Little did we know the great challenges, coupled with great joys that lie ahead.

At 12 months, several things happened. Andrew had his first of 3 seizures (they ended for good when he turned 6), and he wasn't reaching some milestones (talking and walking). But so many kids are late bloomers, so no worries. Yet. He later started speech therapy at 2, because he still wasn't saying any words. A few months later, he also started physical therapy because of gross motor delays. He didn't really have a diagnosis at this point, just some delays, and we got early intervention for each them, as they surfaced. When Andrew turned 3, he was evaluated by the PUSD, and qualified for the C.H. (communicative handicapped) preschool class. What a great 2 years that was! He made such great strides in his talking and motor skills. At 5, Andrew entered mainstream kindergarten, as urged by his preschool teacher and therapists. 

Fast forward several years....social challenges, new placement into the special day classroom, repeating 2nd grade, mainstream classes again for 2 1/2 years, special day classes again with mainstreaming, diagnosis at 11 of high-functioning autism (HFA)....and now he's 14, in 7th grade, and wears a size 12 shoe! The autism diagnosis came later in Andrew's childhood, because he never exactly "fit" the diagnosis criteria. He had always had some of the behaviors listed in the DSM-IV, but not enough to meet the minimum needed for the diagnosis. As time went on, he was finally given the HFA diagnosis.

My big boy at 14

Middle school. What a joy! Actually, it's not ALL bad, but there are definite challenges. Socially. The social aspect of middle school is SO HARD on a typical child, let alone a child that doesn't read social cues, talks w/o thinking first, has impulse control issues, and wants to fit in SO BADLY, yet doesn't know how to appropriately. It can be a tremendous challenge for Andrew, his teachers, his therapists, and his family. Andrew is such a sweet boy, with a big heart, a great sense of humor and a lot of love to give. It just makes me sad that everyone can't see that side of him like we do at home. At home, we have good conversations (with consistent eye contact), we laugh, we cook together, we go out to eat, and we just hang out like every other family. We are also a very social family (I know, you're surprised) ;-), we have company over all the time and go out a lot, and with a little advanced preparation, Andrew does pretty well. It ALWAYS amazes me when we go out, and he orders himself, with complete eye contact and excellent manners (and the waiter, of course, is a stranger). At that moment in time, he doesn't have special needs - he is like all the other kids that are ordering their dinner, only Andrew says please and thank you!

But at school, and even with some family and close family friends, anxiety can get the best of him and the eye contact and comfort go away. I know. A lot of people are like that. But many many people know how to work around that, to fake it, to filter thoughts before speaking them. People on the spectrum don't know how to fake it, or how to filter. But I am not giving up hope that this behavior can't be learned - he is learning, constantly, and has most definitely shown progress over the years. 

Andrew has also learned so much from his younger brother, Robbie (12). Robbie is a typical-developing boy, who is very social. Sometimes it's hard, because Robbie is the kid constantly getting texts, invited to parties & sleepovers, etc. But Andrew is accepted by Robbie's friends. Sure, I see "that look" once in a while, and that is natural for kids, when Andrew says something odd. But they are sweet to him, they listen to him, they aren't rude to him. I feel this is not only because Robbie has chosen good kids to be in his inner circle, but also because Robbie lets them know that this is his brother, this is how he is, and it's ok! Kids that don't live with special needs in their home can learn so much from kids that do. Robbie does sometimes get embarrassed by Andrew, and I have to validate that too, because I know it can be hard. And for goodness sake, he's 12. EVERYTHING is embarrassing!

I feel, and have always felt, that it is my responsibility to educate my community on autism, what it means, how to support our autism community as a whole, and how to better understand our fellow friends and neighbors who are living with autism in their homes on a daily basis. I talk with my friends about it all the time, and in turn, they are educating THEIR children on what it means to live with autism. This helps all those kids better understand Andrew, other classmates with special needs, and to have much more patience and understanding when they are with him. It's a win-win!

I am so grateful that we have many friends that love and believe in Andrew. We live in a compassionate community (for the most part). He has AMAZING teachers, therapists and support at school. Our entire family (and friends that we call family-you know who you are!) all show Andrew what unconditional love and patience really mean.

I do have days where I have my little pity party cuz this parenting thing is hard (hey, I'm human!). But I pull myself out of it (or my girlfriends pull me out, usually with a glass of wine in hand). The way I see it, EVERYONE has challenges in their life. Whether it be parenting a special needs child, health problems, a difficult marriage, death, a challenging job, other kinds of issues with their children, caring for aging parents, etc. But my challenge? Mine comes with rewards, almost every day. We celebrate everything - making a D into a C, saying "hi" to a new friend, following the rules at school, running the mile (with little walking), "getting" sarcasm, reading body language, compromising, and I could go on. We celebrate all the little things that are intuitive for many, things that most take for granted, but have to be learned by Andrew. So, my challenge, though difficult, is rewarded on a daily basis. All should be so lucky. ♥

So, how about that refill on my wine? I'm ready. ;)

jrb