Before the autism label, this was the start:
a doctor’s question nearly stopped my heart.
“What happens when you ask him to get his shoes?”
“Not even close” I said, dreading the news.
Continue reading ““Understanding Language” poem by my friend India DeCarmine”
I am privileged to know Annette Hines, Esq., a special needs attorney and estate planner in Natick, Massachusetts, since we are in the same field. Her new book powerfully describes how it feels to parent a severely disabled child, from beginning to end. Her daughter Elizabeth was born with a mitochondrial disease that would prevent her from being able to walk or talk, and would ultimately end her life at age 17. Yet Elizabeth was the love of Annette’s life, and Annette’s descriptions of her amazing parenting journey hit me hard and deep. I couldn’t put the book down.
Continue reading ““Butterflies and Second Chances” — Read it!”
There’s a reason for the saying, “Don’t kill the messenger.” We never forget the time when we first hear the news of a tragedy, or in my and many of my clients’ case, of a terrible, heartbreaking diagnosis for our children.
Certainly it is not easy for doctors to tell parents the news. They need to be kind, but at the same time clear and accurate, without sugar-coating. They have to do this sort of thing routinely, and presumably have to protect themselves from feeling too deeply, for their own mental health. But I have heard some doozies. (Some of these are from the wonderful book “Far from the Tree,” by Andrew Solomon. Read it!
An old friend told me the other day that she had no idea what we were going through when we were raising our autistic son, Billy.
“You were such a stoic all those years. Always doing something positive (loved the tandem bike and nightly swims). You didn’t fully share how extremely hard it was, how traumatic. I’m so glad it’s on the other side now, and that you’re able to help people in your situation.”
I had coffee the other day with an autism mom who I had never met before. She was finishing my sentences like we had grown up together. She had an autistic son about the same age as mine, and her level of understanding was almost freaky.
I told her that Billy used to hit people, and although he doesn’t do it much any more, my stress level spikes horribly when he does, and it lasts the whole day.
“PTSD,” she replied.
Tere Ramos, a special education attorney, and I recently presented as part of the Empower Women series sponsored by Lexington Wealth Management. Our podcast is here:
Remember Roberta Flack’s song, “Killing me Softly?”
Strumming my pain with his fingers
Singing my life with his words
Killing me softly with his song
Telling my whole life with his words
Killing me softly with his song
Well, a book can do that too. Author and autism mom Whitney Ellenby has written a powerful account of what it is like to raise a severely autistic child, made all the more harrowing for me because so much of what she described was my life too.
Broadway has announced a new season of autism-friendly shows in NYC — exciting!!Here
This reminds me of when Billy and I were able to attend The Lion King, one of the best shows ever produced, without any worry that his rocking or singing would disturb anyone. In fact every other person in the audience seemed to be rocking or talking or singing or clapping or standing up at inopportune times (Autism Speaks was the sponsor).
And what a show it was. I cried at the opening Circle of Life, which is so overwhelming anyway with elephants and zebras coming down the aisles. I looked at the mom next to me, who also had a young adult son with her, and she was crying too. To think that we could have our 20-something sons finally attend a Broadway show was just too much.
My husband and I took our two other sons to see The Lion King five years ago, without Billy. Billy was at summer camp and it was our chance to do things like that, but I never forgave myself. Because it was Billy who really loved The Lion King, and it was because of Billy that each of us knew every line of the show – he had literally played the Lion King DVD hundreds of times. We all still love the DVD.
The show was just incredible, from beginning to end. The children in the audience were well behaved and engaged. Excellent people watching, I must say, and an unforgettable amount of love in the room. It was one of the few times when I felt truly privileged to be an autism mom, and part of something so wonderful.
Needless to say, we are hoping for more performances that are autism-friendly in the future. The world is a different place than it was in 1994 when Billy was first diagnosed. Billy has made great strides to try to fit into our world, and now it seems that our world is trying to meet him half-way. Amazing.
A supplemental needs trust, also known as a special needs trust, is a special type of trust that both provides management of money for the disabled beneficiary, and maintains the beneficiary’s eligibility for government services.
Supplemental needs trusts are an important component of financial planning for an intellectually handicapped child. These trusts allow disabled beneficiaries to receive their inheritance – as well as gifts, lawsuit settlements, or other funds — and not lose their eligibility for certain government programs. Because the beneficiary has no control over the funds in the supplemental needs trust, he or she is not considered to own them. Accordingly, the trust will not affect eligibility for public benefits, such as MassHealth, Supplemental Security Income, and subsidized housing. (Distributions from the trust, however, can sometimes affect continued eligibility, and the trustee needs to be advised on how best to use trust funds for the beneficiary.)
Continue reading “Supplemental Needs Trusts: What are they, exactly?”
Financial Planning for Your Special Needs Child: SSI and SSDI
Parents of children with special needs should understand the U.S. government’s two different income support programs: SSI (Supplemental Security Income) and SSDI (Social Security Disability Insurance). These programs both provide cash to disabled people who cannot be gainfully employed, via monthly checks. There is a lot of confusion about the difference between the two programs. Although SSI and SSDI both provide supplemental income to disabled people, and have similar names, they are completely different programs.
Continue reading “What’s the Difference Between SSI and SSDI?”
