Spencer started the Partial Hospital Program this week. Already there seems to be problems. He came home quite upset because another boy keeps swearing at him. He’s not used to profanity and it upset him tremendously. I have no idea what to expect at this place. Clearly this isn’t a typical school and it’s comprised of kids with a variety of mental and social issues. Are they protecting my baby there? When I speak to his “therapist” I’m assured they’re managing the situation. Hmmm, I’m not feeling very reassured by that response.
But, I must admit, it’s been much easier on me having out of the house after four weeks. As a mother I feel guilty even saying that but it’s the truth. I had a great guest on my radio show yesterday, Keeping It Together With Alison, The Safety Mom (www.safetymom.com). Her name is Amalia Starr and she is a motivational speaker, consultant and author of Raising Brandon: Creating a Path to Independence for Your Adult “Kid” with Autism and Special Needs. Against all the “experts’” odds, she helped her 37 year-old autistic and epileptic son live independently for the past twelve years. You can check her out at www.amaliastarrspeakerautism.com .
I love every show that I do but speaking to Amalia really got to me. First, I am in awe of this amazing woman that she fought against doctors and experts 37 years ago when autism was hardly known let alone understood. We think we have a struggle today? I can’t imagine the strength and fortitude she needed to have! She related a story on my show about how, when Brandon was nine, she took him to a pediatric neurologist to discuss his epilepsy. Before even meeting Brandon, the doctor pulled Amalia aside and whispered to her that she should never discuss this with anyone and to hide his illness because it was such a stigma.
She sent him to a mainstream school where she told me he was beat up almost twice a week. The teachers had no patience for him because, since she was advised to hide his affliction, she never discussed his issues with them. She talked about the agony she felt every day when she dropped him off at school. Moms- who out there can’t relate to that???
And then she talked about something that hit me in the gut and I struggle with daily – acceptance, honesty, dignity and peace.
Acceptance of Brandon’s disabilities. Amalia said that when Brandon turned 13 she finally accepted his afflictions and, once she did, it became much easier to accept and manage. One of the major issues that caused my divorce is my ex’s denial of Spencer’s disabilities. To be fair, it’s not only my ex but family members and friends. Spencer “looks normal” and, regardless of his diagnosis, people seem to believe if they “manage him” and put him with “normal” kids Spencer will be fine. All that does is lead to frustration and pain for both Spencer and them.
Honesty about our struggles. Amalia freely admitted that there were many times “she lost it” when dealing with Brandon. It’s so nice to hear that because often times, when I feel like I’m at my wit’s end with Spencer and just can’t take it anymore, I feel guilty for having those thoughts. So, the greatest advice I received from Amalia yesterday and what I’m passing along to you is It’s OK to admit we lose our patience with our special needs’ child – it ain’t easy!
We need to preserve our child’s dignity . Amalia said that all too often, the first thing that our special needs’ child loses is his/her dignity and, once that’s gone, it’s almost impossible to get back. I look at Spencer every day and remind him (and myself) that he’s an incredible human being who will do amazing things one day. There are mean people in this world who will say horribly insensitive things but, he is better than them in so many ways.
And finally, the last bit of advice, care for yourself. It’s emotionally and, at times, physically exhausting caring for our special needs child. Amalia said the way she survived was by taking care of herself as well. At first that meant just 15-minute walks alone. But she said even if you can’t do that just go outside and look at a tree or jump up and down in the living room. Whatever you do, be in the moment. Don’t think of the million things you need to do later. Just take care of yourself for a few minutes.
Thank you, Amalia.
Alison Rhodes is the founder of Safety Mom Enterprises and Safety Mom Solutions, the premier baby proofing and child safety company in the New York, New Jersey and Connecticut area. Alison is a family safety expert, TV personality and consultant.