Thursday, November 20, 2014

A Charlie Brown Thanksgiving: Raising A Son With Special Needs


In A Charlie Brown Thanksgiving, Marcie says to Charlie Brown:

"Thanksgiving is more than eating, Chuck. We should just be thankful for being together."

This message is the true meaning of Thanksgiving.  No wonder Special Needs Moms everywhere I turn are wrought with angst, anticipation, and bittersweet hearts.  For when faced with Marcie's message to Charlie Brown, we are punched in the gut with the difficulty of being together, when this together involves our kiddos with Special Needs.  Because it is a consistent truth that most people with disabilities are certainly NOT their best with crowds, aka: together.

I was struck with the responses on a Special Needs Blog earlier this week asking parents how they best handle Thanksgiving with their Special Needs children?  So many people talked about inviting family and friends to their houses.  For another disability universal truth is that being with lots of people, especially being with them in a traveling situation and not in one's home, is a recipe for disaster.  We, Special Needs parents out there, who have invited our entire family to our houses are sighing with relief. (Sort of)

As I am one of those who invited 20 or so family members over for 3 days of Thanksgiving togetherness, I also feel afraid and full of ANGST.  Afraid of what Willie will do, say, and act like in front of all his aunts, uncles, and cousins. Afraid that he will make others afraid.  Worried he won't have fun. Afraid he won't feel the love and connectedness that is family.  Afraid that Willie will wreck all the typical family members chance at togetherness. And then I feel torn as being together is not really fun for me, Willie's Mom.  I am too braced for the worst possibility of Willie.  It is a bittersweet dilemma that repeats year after year for every holiday and celebration.

So to those parents out there, enjoy the moments. Try to stay positive.  Remember you are not alone. And if you strive for togetherness over Thanksgiving, you are brave, noble, and courageous.  Of course, there's always the delicious food! Happy Thanksgiving!


Tuesday, November 11, 2014

Letting Your Special Needs Child Grow-Up: Raising A Son With Special Needs

We all know those Helicopter Moms: You can spot them a mile away. Here's what those Mamas do: they dote, live through, control, get way too involved, interfere, forget their own selves, take away natural consequences, and try to remove all pain. You see these Mamas on the Soccer Field at every game with pins of their kids smattered all over their belongings. They yell loudly from the sidelines: too loudly. You see these Moms in schools: emailing, calling, and arranging conferences to meet with teachers to argue their child's grades, bad behaviors, and what have you.  You see these Hover Moms on Facebook, posting achievements after accomplishments after amazing feats their kids do. We all know them!

I disdain these Helicopter Moms.  I vow never to be like them so I barely cheer for my kid at his Lacrosse games, I am intentional in my Facebook posts about my children, and it takes a lot for me to get involved in my kids' academic issues. I am just "so proud of myself." (sarcasm, please)

Guess what though, I am ONLY not a Hover Mom for 3 of my 4 kids. But I am one of those Mamas to Willie. Yikes.

In the world of Special Needs Moms however, we are advocates, healers, devoted, sacrificing, and all around pretty amazing. And until now, I was proud of my roles in Willie's life.  But he turns 22 on Friday and things are changing. For one, he is pushing back against me.  He wants control in all things Willie. Another thing is that he is maturing and thus able to better learn from natural consequences, no matter the suffering.  And there is also Willie's physicality: He is almost 6 feet tall, 185 pounds, broad shouldered, with a demanding presence.  Just being with him now makes you back away.  He is grown now and demands more freedom, less hovering.

And so I walk away.  I purposefully let things go. (SOME THINGS!)  I force myself to trust Willie and his demands for independence.  I patiently and painfully let his new Caregivers guide me through this separation. I am attempting to relinquish my Helicopter Mother status.

In the meantime, when Willie comes home on Friday for his Birthday, I can't wait to shave his fuzzy and scraggly beard!  UT OH!


Wednesday, November 5, 2014

The LIST: Raising A Son With Special Needs

































This list actually happened.  Just the other day, 15 of us sat around a long, rectangular table, and wrote what we liked and admired about Willie. The fresh, new Sharpies combined with the different color sticky notes made this exercise even more precious then it already was. It felt festive! This was the standard process for the beginning of all new student's Biographical Timelines at Soltane. The meeting lasted 4 hours. More on that in another post.

So we sat around this table, scribbling away with our perfect Sharpies.  Every now and then we would look up at one another or stare into space for inspiration.  The room was silent except for the precious documenting. It was genuine and inspiring as everyone kept going and going, recording never ending things they liked and admired about my Willie. But this wasn't even the best part.

After the piles were gathered, the Facilitator of the meeting said something like "this is a great indication of Willie and his strengths, as there are so many sticky notes." The people around the table, except for myself and 2 others, had only known Willie for 5 short weeks.  Yet they all seemed driven to get down on paper what can make him so delightful.  I will never forget the kindness and love in the room that day, even before those sticky notes were revealed.

Next, this wise Facilitator read each and every note with great expression and even started grouping the common themes.  We all just smiled and beamed with positivity.  I know I blushed, as this took what felt like a very long time and was so personal.  All of Willie's strengths read aloud and then stuck to a large paper for the group to  know, process, and inhale.  It was overwhelming and humbling. And I joked that we didn't need to have the next 4 hour meeting after all, as everyone already knew Willie so well.  The group laughed.

I have imbedded those 30 minutes into my heart and soul forever.  I catch myself revisiting this list more often then not, to remind me that Willie has many fabulous qualities indeed. Perhaps that was the purpose of the list?