Consumed by the Special Needs

JP has been home for just over 2 years now. To the say the first year was "turbulent" would be a gross understatement. Our little world, as we knew it, was flipped upside down and we had to painfully adjust to our new "normal". We're still making those adjustments today.

While the first year was spent going to countless doctors including ophthalmologists, ocular oncologists, ocularists, pediatric orthopedists, orthotists,  neurologists, ENTs, developmental pediatricians as well as countless hours in the hospital for multiple eye surgeries, MRIs, blood tests and treaments and stays at the Ronald McDonald House. The second year has been a journey of another kind. Once JP's health was stable, we began the daunting task of "reprogramming" him. When JP arrived home, at age 3.5, he no life skills. None. He could not feed himself or drink independently from a cup. He could not communicate. He was not potty-trained. He could not dress or undress himself (he wasn't even able to pull his own pants up or down. We had to teach him everything. Fortunately, he's been a quick study. Within a few months of being home, he learned first, to finger feed himself, then eventually use a spoon and fork. Today he has more than mastered the "art of eating". He can also drink from a cup, successfully. He is fully potty trained and can both undress and dress himself. He is learning to wash his own hair and body in the tub. We are still working on better teeth brushing, but he's getting there! While it's impossible still to have a conversation with him, he is able to answer questions and communicate his basic needs, like telling us he's tired, hungry or needs to use the potty. He's pretty good at stopping when we say "stop!" and coming to us when he's called. He's mastered the white cane and mastered getting around in familiar environments, like our home and his school, without it. He knows his letters and letter sounds and can count endlessly. He knows all of his basic shapes and some colors... (we're still unsure but we think there are colors he doesn't see) A lot of very hard work and tears and prayers have gotten JP to the place he is today. He's made wonderful progress. He is still VERY much behind his same age peers.

I try not to get consumed by the special needs. A couple of weeks ago, JP was award "Most Improved Student" in his PK class. We were invited to go to a baseball game to receive JP's award. It was probably the first time we all went out as a family and things felt normal. (Well, normal for us, anyway). But when life is consumed by therapies and special ed and adaptive sports, it can be somewhat difficult not to get caught up in it all. I do a lot of research. I belong to a bunch of special needs blogs and internet community groups. I seek advice and hope to be able to return the favor by giving some good advice back to the community.

In the mean time, I plan to try to focus more on NOT getting consumed in JP's special needs and trying harder to just enjoy our time together, as a regular family. I know it's a stretch goal... I'm hoping summer will inspire us to do more and obsess less!

What do you do to enjoy your time together as a family? Please comment!