Of Parents, Attachment, and Surprise Outcomes-Part I of II

Well! Happy New Year! Months have gone by since a coherent blog has been posted. Blame it on trying to get the practice up and running, or grant researching and writing, or whatever...Good old writer's block and a lack of inspiration is the culprit here. Hopefully the New Year will bring more inspired topics to the table!

Thanks to an SOS call that I put out on Facebook, that renowned digital town square, I was gifted with some topics that my would-be readers requested to see here in the Studio. So in order to respond to everyone's feedback, here is part one of two...actually, it's more of a hodgepodge of topics that I have gladly embraced (thank you, Tonya and Bob!)to start a conversation again about music therapy.

Part one of this "series" is actually just my tribute to parents of special needs children. Next to military wives, these people are my heroes (If you happen to be a military wife AND the parent of a special needs child, you rank quite close to sainthood, in my book!).

I've sat in my share of tense IEP meetings, watching the battle lines being drawn. Parent vs, SPED director, parent vs. principal, and most unfortunately, sometimes, parent vs. teachers and/or therapists. Sometimes it's just barely civil. Sometimes it's openly ugly. Sometimes one side is the aggressor, other times the hostility is mutual. It's always agonizing.

Over the years, though, I've become tenderized, if you will, to the parents. Yes, even the hostile, aggressive ones. Certainly I understand budgets, program limitations, funding dead-ends (Music therapy is often the first thing to go in the SPED arena, when budgets are crunched). I understand the frustration of not having the right staffing, the right equipment, the proper training to give a child what they so desperately need. It's frustrating...and it is a helpless feeling to have to look a parent in the eye and say, "I'm sorry. We can't provide that (service, one-to-one assistant, increase in service time, etc.)" I know that we cannot, realistically, meet every single need in the school setting. It's an imperfect system. I get that.

But-the frustration and feelings of inadequacy pale in comparison to what parents of special needs children experience on a daily basis. I can only imagine the day to day struggle for every little thing. Going shopping is a major undertaking, whether you have a child on the autism spectrum who melts down because of the hustle and bustle of your local grocery--or a multiply-handicapped child who requires a wheelchair, needs to be tube-fed and diapered before you walk out the door, and who might have a grand mal seizure (or many) without any warning. Having a moment to enjoy the adult company of a spouse, relative or friend is a luxury. A full night's sleep? Forget about it. Not if you have a child who doesn't sleep--or has MORE seizures. AND--isn't it funny how some friends and family step back after a diagnosis? Hmm. So the support system is cut down even more drastically. On one hand, this does separate the wheat from the chaff...but that pruning is always painful. It leaves scars.

Add to that the never-ending medical appointments, therapies, hospital stays. Insurance claims, denials, re-submission of said claims, and fighting with yet more people who don't know your child who are making decisions based on a bottom line. Are you kidding me?

At last, there is the school system, once the child turns 3. And no, I'm not bashing, nor biting the hand that feeds me and my family. I love working in school settings, and I've met more dedicated professionals than not. However, consider the IEP process...more people involved in the care and education of your child. More assessments, more talk about deficits and needs and behaviors, and the list goes on. It's enough to make your head explode!

When all has been peeled away, I don't care who has the PhD, or the title. Yes, we all may be the experts IN OUR FIELDS, but you, the parent, are the expert on your child. We, as the experts in our chosen disciplines, need you. We need your input, we need your partnership. Of course there will be disagreements here and there--but it is my hope and prayer that you all find the best educational settings for your children. AND--my hat is off to you, for the situation you are in is most likely not of your choosing, yet you tuck your chins, move forward, and fight like warriors for the most precious people in your lives. May we, as professionals, treat that with the respect and care that it deserves.