Give Me My Wings To Fly!

Brian will celebrate his 15th birthday this weekend, another milestone in the life of our son who both inspires and scares us at the same time! The reasons for this inspiration are many: the medical/neurological challenges that Brian has bravely (and continues to) overcome, his persistence in communication, (despite his inability to speak), and his overall resilience to take each day as it comes, no questions asked- I can learn so much from Brian in this regard, though I will always ask a ton of questions! šŸ˜Š

The scary part primarily has to do with trust, specifically, trusting others and ourselves, as we navigate the often complicated, (but never boring), thing called Life With Brian. One of the most valuable lessons that I have learned over the last 15 years is that special needs parenting is not for perfectionists. Any notions of what I perceived this experience would be like when Brian was first born, and up until today, has been thrown out the window. “Progress, Not Perfection” has slowly taken root and has become my mantra, particularly when my own sensibilities are challenged, (which is most days). In the long run, it’s a better way for me to live so that I can retain my sanity, but getting to this place of acceptance has taken years of heartache, mistakes, and self-forgiveness.

It’s not easy to trust….Let’s face it, our worlds were turned upside down when we first heard the despairing news that our children were diagnosed with a disability. In our case, it was when Brian was first born, and then again with the autism diagnosis at 30 months old. Everyone of us has a story- we can pinpoint THAT specific moment when we learned that the life we had hoped for our child was not to be…It is something we will always remember and it has changed us forever… Nevertheless, we have learned over time to accept and adapt as special needs parenting requires us to. We take cues from our children and our level of happiness is exactly proportional to theirs. We advocate feverishly and do our very best to provide a good life for them. We give our kids every conceivable life experience, as best as our personal circumstances allow us to, for their mental, social, educational, and physical well-being. We hope that these opportunities will improve outcomes in all domains, and in the process, rely on a lot of people to help our kids achieve these goals.

We have to learn to trust those who take care of our children, not only for our kids optimal development, but more importantly, so that our children can practice some level of independence away from us. Easier said then done for sure, but it’s absolutely imperative! Their vulnerability automatically suggests that we should protect them, and of course we need to do that, but preferably not inside a vacuum. We must give our children their own wings to fly for the sake of their own independence, whatever that will mean for them, despite how that makes us feel.

Gulp- that is so hard to do!! I have concluded that I will never have this part mastered, in fact, I often “fake it, until I make it”, something like being an actor on a grand stage. I don’t like feeling anxious or not in control. I do worry every time Brian tries a new activity outside of the home- is he going to like it? How about transitional/behavioral issues? How about the folks working with him, will they really understand what to do and implement what I have suggested? Most of Brian’s social and educational experiences have been positive, but not all, despite the copious amount of ” Brian details”. We try to mitigate the frequency of these negative situations ever happening with our best efforts, but life is not perfect, nor are people and circumstances. This is when learning to let go of what you can’t control comes in VERY handy. Life is filled with joy, but also disappointments and sadness, something that our special kids will also need help in learning to cope with.

When I look back on Brian’s life so far, there have been countless examples of situations where Jim and I had absolutely no other choice than to trust that somehow, we would get through whatever the challenge was. I’m sure you can relate! This often requires taking the time that we needed to trust those who would take care of our son during those challenges, most still ongoing, taking little baby steps… From the school bus at 4 years old, then day camp, to overnight camp. And yes, I was the crazy Mom who followed the bus to school the first week Brian was on it! I also asked the overnight Camp director the first year if I could pick Brian up daily at 5pm, lol! It is these very same experiences that have given us the courage over time to face the inevitable challenges of the present and hopefully the future- and that includes our children’s independence, an important issue that will remain long after we parents are gone. Which is why it is so important for our kids to practice these independent skills in any shape or form right now, especially away from us, in order to set the stage for later on..

If Brian had the words, I have a feeling he would say: ” stop worrying so much” and “I wish I didn’t have to do chores”, lol! His facial expressions and heavy sighs at times speak volumes to me, especially since the onset of puberty, what a teen! Much to my chagrin, my baby is growing up, (Brian proudly displays his photo ID from Motor Vehicles in the picture below) and so must I, for our mutual independence clearly depends on it- it’s the best gift I can ever hope to give my son.

Until we meet again, thanks for reading! šŸ˜Š

Iā€™d Like To Be, ALWAYS In The Sea! šŸŒŠ šŸŒŠ šŸŒŠ

I can’t think of a blog title that is more fitting than this one for Brian. Perhaps in his next life, he will return as a fish. If Brian had any say in the matter, he would wholeheartedly agree that this is a fantastic idea! šŸ˜ŠšŸ‘šŸ»

I believe Brian’s love affair with water goes way back in the womb, where there was a severe shortage of amniotic fluid. In fact, my uterus was ultimately not baby-friendly- Brian stopped growing in-utero due to a condition called intra-uterine growth restriction ( IUGR) when I was 7 months pregnant. I was immediately put on bedrest in the hospital for the duration of the pregnancy, and was able to eat to my heart’s content. In fact, I gained over 20 pounds in the month I was there, all the while having my amniotic fluid (amongst many other things), very carefully monitored.

Thankfully, both Brian and I started to gain weight and were moving along very nicely until the day of The Double Muffin Incident- I will return to this shortly…

As you can imagine, the same 7 dinners that were being served weekly were becoming quite old, especially the Friday Fish sticks ( this was a Catholic hospital). By Week 4, I was REALLY fed up with this menu, especially the fish sticks. It was my husband’s great misfortune that 4th Friday evening when he came to see me after work, to visit a crazed woman who simply said: ” F—-k these fish sticks, go get me a Whopper NOW! Don’t forget the extra large fries and the largest chocolate shake known to man- RUN!!!” I scared the s—t out of this poor man- without a word- he turned around- and RAN to the nearest Burger King for my sake and his! This is what can happen when one is on bedrest for a little too long, lol! It truly was the best food of the pregnancy, lol! šŸ¤£

Four days later, Tuesday, 8/25/03, after

Turkey/Lettuce and Tomatoe on Rye Tuesday, I had a craving for a large blueberry muffin- make that 2 large muffins after lunch- they were so delicious! Shortly thereafter, I had my daily visit to the antenatal testing unit, where an ultrasound would be performed to see how Brian was doing. I noticed that my doctor was looking at the ultrasound quite intently. “When did you eat last?”, my doctor inquired. I told him it had been 30 minutes prior. He told me that Brian would be born that evening via c-section because my amniotic fluid finally hit an all-time low. Poor little guy- no wonder he loves water so much now, as he was deprived in the womb. A very scary time, as you can imagine, and truly a miracle that Brian was born without additional complications at 36 weeks old, exactly 5 lbs. He arrived into the world that evening at 8:30pm with a set of lungs that worked quite well ( yay for lung steroids!) and an affinity for sponge baths, eventually regular baths, and now showers, ever since! Brian’s obsession with water truly goes way back, which is why the special needs surf camps mean so much to him- his joy and exuberance is made complete whenever he is in the water!

Water is also one of the few activities that Brian truly enjoys. I think this is why this passion supersedes any fear of the ocean or a pool. He can remarkably hold his breath and doesn’t mind going under water. We have no idea how he learned to do that or why he is not afraid. Brian was knocked off his surfboard a few times last week in the ocean due to approaching hide tide and went under the water in the flash of an eye! He quickly rose to the surface, vocalizing his sheer joy, like it was the best thing that ever happened to him! I actually believe Brian would say exactly that if he could tell us…

Brian’s hobbies/interests are very limited at this time, though you never know when this might change… in the meantime, I am glad that he has something that he can truly call his own, an activity that is healthy, refreshing, and calming, perfect for his sensory-seeking soul….

Like all of the wonderful people who have been placed in Brian’s life, the volunteers who run the special needs surf camps are another beautiful group of folks who make smiles, squeals of delight, and deep sleep possible for our kids (and we parents) at the end of a wonderful water extravaganza! How truly blessed are our children for having these incredible experiences , while adding to the rich tapestry of their lives. I will be reminded of this fact every time I see Brian’s happy spirit soar to the heavens while surfing (or splashing) in his Happiest Place on earth. šŸ’¦ šŸ’¦ šŸ’¦ šŸ„ šŸ„ šŸ„ My joy is also complete! ā¤ļøā¤ļø

Until we meet again, thanks for reading. šŸ˜Š