Skip to main content

12 Step Program


A few weeks ago I wrote about our family's dependence on Ben's Convaid Stroller and how my realization of this addiction made me change a few things in our lives. For one, Ben takes his second dose of seizure meds earlier in the day. I believe that the meds contribute to Ben's wildness and sleeplessness. This change seems to have worked. We have not seen many 1am and 3am's lately!

Next, I called Ben's new school to see how we can get Ben on the bus without going in the stroller. I want Ben to walk up the stairs, with assistance, and then once off the bus at school, go directly into his walker.  There are many "steps" that need to happen for this to actually happen, i.e. Ben has to get tested by a school physical therapist to see if he meets their guidelines. I am hopeful that even if he is not approved by the start of school, I will at least insist that he is met with the walker at school. I want the new school's staff to visualize Ben as a walker. In fact, I want everyone to see Ben this way. It changes the set of expectations people apply to him.

Then I emailed all Ben's therapists to let them know that kid gloves are to be taken off. For the past several months, I have told the therapists to take it easy with Ben while we play with seizure meds. I shared with them the goal to get him walking to the bus and they have all responded with plans to practice. PTs are working with Ben going up and down stairs while holding on to the railing. The OT is also working on the grab and release skill for holding onto the railing. We have talked in speech about following the commands for "step up", "step down", etc. I also think a video of someone going up and down the bus stairs would be helpful.

At home and when we are out and about, we are using the stroller in only extreme circumstances - it is midnight and Ben is still awake or for very long walks. Otherwise, he is on his own. I think Ben is sitting in a regular chair at the table more consistently for meals. We tell him dinner is on the table and if he is hungry, he crawls on over.

Finally, I asked the camp to follow suit with all these ideas. We left the stroller home each day and Ben used the walker at camp. This gave him more freedom and independence. On the final day, they had a party and awards ceremony. Ben received the "Watch Out, I'm Mobile!" Award.

We all set the bar higher and it seems that Ben is ready to meet and exceed it.

Comments

  1. LeslieAugust 25, 2011 at 10:25 PM

    This is very cool-- and courageous. Go Ben! (And I LOVE his hair in the second shot. What a gorgeous color!)

    ReplyDelete

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence
1 comment
Read more

Make this Race Amazing

Mecklenburg County's Therapeutic Recreation's Amazing Race is Saturday, March 24, 2012. All funds raised go directly to the scholarship fund for summer camp. Summer Camp is 8 weeks long with over 150 children with special needs participating. Last year, over $6,500 was given away in scholarships. In times of budget cuts and loss of resources, Amazing Race is a creative way for the staff to raise money for the children who may need financial assistance attending camp. I will be posting photos from 2011 camp. I am only posting photos that do not show faces of the children, but you will get the idea about how much they enjoy the activities. You don't have to see their smiles, you just have to feel them. The staff have sent me their thoughts on how they feel about camp and I will be posting those as well. Most are trained as recreational therapists and have devoted their life's work to helping children and adults with special needs learn skills, make friends, de...
Post a Comment
Read more

He Ain't Heavy, He's My Brother

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h...
1 comment
Read more