autism

Brian’s Bittersweet Birthdays

by donna

Brian’s birthday is next week. 16 years. 16 love-filled  anxiety ridden years. 16 years that I could never have predicted in my most worrisome of scenarios, but the 16 years I’ve grown the most in my life. Some times you need knocked around to know what you are made of and knocked around is exactly how I feel as we turn the calendar to Brian’s birthday month.

Brian’s birthday, 12-12, is the most bittersweet day of the year for me. It is more meaningful than any holiday, anniversary, or birthday (including my own).  I love all my children equally and their births are every bit as special but there is something so powerful… powerfully sad that is,  singing happy birthday to our sweet boy Brian.
                                                                       

Brian’s birth announcement and Christmas card 2003


I know what you are thinking. Choose joy. A popular phrase that if you are  scrolling though social media you likely will see more than a few times. Two words that may make you feel guilty if you are having a bad day. Two words that I practice most of the time and do a pretty good job of but it is not healthy to not feel your emotions, and some of the challenges that go hand in hand with autism prevent me from always “choosing joy”. You’d have to be an emotionless robot not to feel the pain sometimes and that is okay. The message the brain sends to our body is not always joy. Its called humanity.  As we prepare to celebrate our boy’s birth there is an ache inside that gnaws at me. I’m quite sure I’m not the only special needs mom that feels this way. In fact, I know I’m not.

be still my heart
Brian’s birthday is tough.  Well, actually, Brian’s birthdays after his first birthday have been tough.  At his first birthday, he appeared to be developing on a normal track and we had no signs that he was on the spectrum.  By his second birthday, we knew.  He was non-verbal at that point and not developing language or social skills like his peers.  And so it has continued for the last fifteen December 12ths. The milestones that never happened bubble to the surface. Our dreams for his future (and our future) smack us in the face like an unexpected wave in the ocean. I’m always at a loss when people ask what gifts he would like because he does not ask for anything (not so much because he can’t articulate what he wants but because he demands so little with respect to material things). He never has eaten his birthday cake and he’s never sung the birthday song. We watch his peers move forward while our world stands still.  I’ll make sure I “like” all the photos plastered on social media this year as his classmates begin the driving process. God forbid I appear envious but it is impossible not to be.  An irrational but undeniable part of us still wants Brian to be hitting those milestones with his peers even though we accepted the actual reality many years ago. It is a feeling impossible to accurately describe unless you have experienced it.
                                                                           
the crown prince 🙂

This sixteenth birthday is especially bittersweet.  Lets face it, it’s a big one. Kids can’t wait to be 16! It marks the beginning of independence and mom and dad see an end to the constant driving of their children. I remember when I turned 16, it’s an exciting time. The next big one is 21 and that I can’t allow myself to think about. I’ll most likely be unable to move from my bed curled up in the fetal position at a loss of what to do telling myself we could have done more when that December 12th  rolls around. It’s the dreaded age no special needs parent wants to think about so I will stop right now and focus on the here and now. What we are celebrating at 16 may appear to others as very small steps forward but to us they are giant leaps. They are #lunderful leaps! You know by now that Brian successfully transitioned to his new learning environment and new team. He is happy to get up and go and we know he is happy because his first words in the morning often are “school?”.  He is happy and that is huge….actually it is more than huge. It is everything and sometimes as a special needs parent that is all you want. There was a time years ago that he was not. He would cry inconsolably and hit his head on the wall.  I walked around on egg shells because I did not know how to help him. I lived in a constant state of anxiety that the crying would start. What it did to me is hard to put in words and that stress has taken a toll on me.   Also,  thanks to marshmallows and medicine for the first time in Brian’s life he is sleeping regularly and for that we are abundantly thankful! A regular sleep pattern is hard to come by in Autism Land but at 16 years we have figured it out. Amen. Another huge thing is his love of outings. Restaurants, stores and running errands have become fun and teaching moments for him.  He has become a “regular” at a few restaurants opening up his life and ours. We’ve got our groove on and we go with it! I used to not be able to take him places because he was overstimulated and would not get out of the car. It was impossible to go anywhere. Thankfully both his school and home life are good now and we feel in sync the best we can for the first time in his life. This is a lot to celebrate and we take nothing for granted. We’ve worked very hard to get to this place.
                                                                                 

shopping with dad  #twinning

 As much as these gains make me so happy and thankful  I  have to keep it real. Big picture real. The fact is Brian is getting older and that means we are getting older. Our getting older doesn’t mean enjoying an empty nest and traveling the world like many of our peers. He is becoming a grown man and we feel time is short to maximize the benefits he gets from being in the public school system.  Once he leaves the high school there is not much out there in the way of full time support.  We do not see the way forward to continue his personal development.  Will it be too late once he is in his early 20’s?  We have no answers to these questions.  Frankly, we are terrified over how to give Brian the best life we can after he turns 21 and even more terrified of how he will manage once we are gone and how our other children will manage all this once we are gone. Our role as a care giver will continue no matter how cruel the aging process may become or how exhausted we may feel. For all of these reasons and many others that can’t be articulated, December 12 this year will be the most bittersweet of all Brian’s bittersweet birthdays thus far. It really has me thinking.

However, the one consoling strand in all this is Brian himself.  He is kind, patient, empathetic, loving, courageous and strong in the truest sense of the word without even knowing it.  Although he requires others (for now anyway) to help meet many of his most basic needs, he is utterly selfless and profoundly pure. His soul is that of an angel and his smile and laugh are infectious. So even though this coming birthday will be bittersweet, the overriding emotion my husband and I will feel is gratitude that this special boy is our son and that we have been blessed and entrusted to be his parents.

How appropriate he was born 2 weeks before Christmas.

He is a gift and we are thankful to be the recipients. ❤

                                                     

handsome in highschool 🙂