Lorri Unumb, vice president of state government affairs for Autism Speaks, travels the country advocating for families and individuals facing the challenges of autism. Lorri is also the mom to a son on the autism spectrum. This is her ongoing series "On The Road For Autism Reform."
At 2:50 this afternoon, I got a simple, 7-word text from my husband Dan:
“What do you want for your birthday?”
My birthday is Saturday, and I love birthdays. We do them up big in our household.
The text came in four hours ago as I write this post, and I haven’t responded or even acknowledged his text. Dan cannot go to the store and buy me what I want for my birthday.
- I want the City of Winston-Salem to adopt an autism/ABA benefit, so I won’t ever get another letter like the one I got last week from an autism mom whose children are insured through the City of Winston-Salem:
"Dear Lorri -- I am so sorry I have been so out of the loop with recent efforts in NC.
In the months since we last met, Holden has been struggling with extreme aggression (biting, pinching, scratching, hair pulling, etc), making it very difficult to attend events with both him and Harper at the same time.
In addition, he is experiencing extreme PICA, to the point that his bedroom is almost bare now. He started with board books, and once those were removed moved on to wood. Once I covered all window sills, door frames, moldings, etc with plastic "corner covers", he moved on to his furniture. Once I removed that, he moved on to pliable plastic toys. Once I removed those, he began shredding his mattress and then his blankets. Aggression aside, his PICA is making outings another challenge altogether.
All of this, in addition to 2+ years of ongoing custody, support and property settlement issues, and also being the primary caretaker of my aging mother and 35 year old sister with cerebral palsy... we are barely keeping our heads above water!
I don't mean to overshare; I just want you to know that I appreciate everything that you do every single day for us. I apologize for not remaining as involved as we were last year and as involved as we want to be. I want to remain involved; I just seem to be dropping balls left and right. THANK YOU for continuing to fight for us. And despite my inability to contribute much currently, thank you for keeping me in the loop!!"
(In fairness to the City of Winston-Salem, we haven’t had a chance yet to meet with them and share the cost-benefit information on adding meaningful autism coverage. I bet they will add coverage once we meet!)
- I want Wal-Mart and PepsiCo and BP and Delta and Coca-Cola and Lowe’s and so many more companies that don’t offer appropriate autism benefits to act!! I’ve heard from families who work for each of these companies and many more. For families who have no coverage and therefore no access to treatment, every day without intervention is a wasted opportunity. Every day of delay matters in the lives of children struggling with autism. It matters to the families who watch their children slip away because they cannot afford to privately pay for treatment (particularly after they have paid their insurance premiums every month).
- I want the state of Ohio and the state of North Carolina, where the legislatures are still meeting, to pass meaningful autism insurance laws this year. I don’t want any more emails like this one from a NC mom:
"My name is Stephanie and I am the mother of two children with one on the way. My oldest, Samantha, was diagnosed with Autism at the age of 2. At two years old, her communication, ability to understand and communicate, was that of an 8-9 month old. She had a moderate to severe diagnoses of Autism. Sam was immediately put into ABA (Applied Behavior Analysis), Occupational Therapy, and Speech therapy. Within 10 months, my daughter was finally able to imitate! She was able to point, give eye contact, and attempt to speak when she was prompted.
All of the therapy she received was in a state that had passed a Mandatory Insurance Coverage Bill. We moved here to the beautiful state of North Carolina excited to start the rest of our lives here! However, we had no idea that this state DID NOT require insurance companies to cover therapies for children with Autism. We were blown away. . . .
The biggest worry that I have, as an expectant mother, is that my baby will be born with an Autism Spectrum Disorder and we will not be able to get him or her the proper therapies that (s)he will need in order to be a successful, contributing member to our society.
Please help my children along with other children diagnosed with an autism spectrum disorder."
- I want the Governor of Hawaii to sign the autism insurance bill that was recently passed by the Hawaii legislature. Governor Ige, I know you have a few more weeks to decide what you’re going to do, but if you wanted to make one autism advocate really happy on her birthday, mine is Saturday.
- I want state Medicaid agencies to get on the stick and start offering ABA coverage to Medicaid-eligible families. This has dragged on long enough! Get started. I long for the day when I don’t get emails like this:
I hope you do not mind me writing you. You do not know me, but we go to the same church.
A friend of mine has a child with a severe form of autism. He does not maintain good eye contact, he does not speak much, some days he just screams all day, and it's horrible. It breaks my heart. And there is nothing I can do to help. He would not stay with me or anyone else, except his parents, so babysitting is out of the question. I tried.
His mother, a friend of mine, is a wonderful parent. Very dedicated, but her patience is running low. I cannot imagine living like that. She did lots of research, read books, watched movies, talked to doctors, they tried various medications, but no good result, other then turning him into a vegetable, which she does not want for him, of course.
When I saw your job title in one of e-mails (about acolytes), I just thought that maybe, just maybe, you might know something encouraging that she does not. The main concern is, of course, his future. He is now 12.
Would that be OK for her to write you?"
I’m grateful to families who write to me personally and tell me their stories. I don’t always respond – I can’t because I get too many emails. But I read all of them, and then some days, like today, I get overwhelmed and emotional with the thought of it all. I wish only that I had more time in each day to help fix the problem for these families.
So to my husband Dan: If you can get me any of these items off my list, that would be great. Or some extra hours in each day would be helpful. At the moment, I can’t really think of anything else.