The Long and Winding Road

It’s hard to believe that Brian was officially diagnosed with autism over 10 years ago when he was just 2 years old. Our heads were spinning then and often still do now. Some things have changed during this time, yet so much has remained the same. The highs are still higher and the lows are still lower when it comes to the achievements, disappointments, rejections, and struggles that Brian continues to go through and always will.

 We thought that we initially were in the “Welcome To Holland” group, a poem written about what the experience is like having a child with Down syndrome. It is described as different place, but just as rewarding as any parenting experience could be.  But Brian’s developmental track indicated more than the average challenges associated with Down syndrome, a realization that occurred over time and too apparent to ignore. He was very different compared to his peers with Down syndrome. It was very painful to watch and most heartbreaking the night when I found several computer links after typing the key words ” Down syndrome” and “Autism”. I honestly didn’t expect to find anything,  yet the Mother Instinct that something was amiss was spot on. Of course this discovery eventually lead us to the DS/Autism clinic at the Kennedy Krieger Institute in Baltimore and to the wonderful Dr. George Capone. We were connected to other families in the same predicament over time. Brian received additional therapeutic and educational services as a result. Social media has greatly impacted the way special needs families can connect and support each other. There are lots of recreational activities for the special needs community, providing social opportunities for our kids and parents, thanks to many good-hearted folks. Each of these gifts have been a blessing and sustain me, especially in the challenging times. But make no mistake- our experience  with Brian’s dual diagnosis is not “Welcome To Holland” rather, as one Mom said, it can often be described as “Welcome To Beirut”, because of the many challenges that autism presents in conjunction with Down syndrome.

One of the main lessons that I have continued to learn in this  past decade is to have very flexible expectations, of Brian, of  those who interact with him on a daily basis, and of myself. However, it is often hard to do! Hard to wait, hard to accept things sometimes the way they are, hard to accept that some things will never change. I find that certain events, holidays, milestones, etc. will trigger emotions in me that I thought I had resolved long ago, bringing me back to the original feelings I had back then, still so fresh, raw, and painful.

Of course it’s a different story when Brian can learn skills. There are specific expectations for that, the bar needs to be raised and held high until he meets them. It takes a lot of patience, people, and persistence to make this happen, step by step, and  the bureaucracy/resistance and slow pace of the process can often be disheartening and exhausting. This is our son’s burden and ours to share with him on this long and winding road, so what to do? How do we make it for the long run?

I am still trying to figure out the necessary components of my “mental and physical endurance kit”. I recognize more recently as Brian is now an adolescent, how important  this kit is to have, but not just during this particular (very trying) season of life, but for the rest of his life and ours. He is getting bigger and we are getting older. I always pray to have the physical and mental strength to care for Brian and to trust God for his future. I struggle- a lot- with the “future” part, like the Doubting Thomas, even though there is clear evidence of God’s goodness in Brian’s life and the people, places, and things in it .  It’s hard to believe and trust, though, of the things yet unseen. I suppose there is a reason why it is called a ” faith walk”. I do know, that the way Brian lives his life, with his pure heart and trusting nature, ( for everything) is an example of true faith in action, one day, one moment, at a time. I can learn so much from my son…

So, finally getting back to my kit- here’s some important tools that I need for the long haul:

1)Sleep, 2)some form of daily exercise to clear my head, 3) Alone Time, 4) Other Special Needs Families 5) The ability to say, “no”, 6) Respite, 7) A Hobby that is fun and mindless-still deciding, 8) Vacations,  even a mini 6 hour one, 9) Lots of Humor,  10) Team Brian members who believe in him and his potential. 11) Compassion and Understanding, instead of Pity and Platitudes-Please!!!

I’ll be very happy just to get some decent sleep for starters, but each one of the aforementioned tools is vital for my long-term mental and physical strength for the journey with Brian. It’s a matter of putting on my own oxygen mask on first , before helping Brian with his (once a flight attendant, always a flight attendant ๐Ÿ˜Š) First thing’s first. I think Brian would be in agreement.

What’s in your endurance kit for the long and winding road?

Until next time..thanks for reading!๐Ÿ˜Š