Liz Petruzzi 3 Things I Did Wrong… and 3 Things I Did Right!
In 1989, I gave birth to our first and only child, a son. Joey was born with a rare, genetic syndrome called Rubinstein-Taybi Syndrome. At the age of six, he received a secondary diagnosis of autism. Over his life, we’ve experienced the ups and downs many families who parent kids with special needs share. Joey is now 28 years old – that happened fast! When I look back across those years, there are mistakes I remember and in spite of ourselves, we did manage to do some things right that I feel proud of.
3 Things I Did Wrong!
I Sacrificed Myself – If I could go back and do it again, this is the number one thing I would change. I was so absorbed in care taking and trying to give my son everything he needed, I neglected myself – my health, my appearance, my family and friends – pretty much everything. My son and his needs were top priority, to the exclusion of everything else.
As a result, I ended up fat, sick and nearly dead (seriously). My relationships suffered and I lost who I was. It took an extreme health crisis to force me to start taking care of myself. As I began to do what was necessary to recover my health, I rediscovered ME.
I Maintained too Rigid a Schedule/ Routine – Another mistake I made was bowing down to a schedule – nothing, and I mean NOTHING could interfere with our routine. Experts emphasize how critical maintaining a schedule and routine is for a child in the autism spectrum. The problem – there is no special needs world – there’s only the real world and it doesn’t give “a hang” about my routine.
We listened to what was considered best practice and did an excellent job – dinner was always at 5:00; bathtime, 6:30; story at 7:30 and tucked in at 8:00.
Company came to town – family we hadn’t seen in years. They invited us for dinner….at 6:30. We had to choose – miss seeing our family or disrupt the routine. It was a disaster – breaking routine resulted in several meltdowns as well as days of trying to get back on track. After a few of these experiences – something important scheduled in the middle of our routine – we made a decision. No more routine. From that time on, we varied slightly our dinnertime, bedtime – everything.
This change made things much better. My son is so routine oriented, when given a set schedule, he becomes married to it and can’t function outside the structure.
I Managed and Controlled the Variables – My son is kind, funny and smart. He has a huge heart, loves helping and giving to those in need. He can also stop the world with an extremely loud, dramatic melt down (please, dear God, let the earth open up and swallow me).
I got very good at managing details to avoid these embarrassing scenes. Sometimes, we didn’t go certain places at certain times. Sometimes, I visited ahead and had conversations about what needed to happen for things to go smoothly. Doctor appointments were scheduled either first appointment or first after lunch to avoid wait time. Meals out were attended at off times – what do you mean you don’t want to have dinner at 4:00?
The problem with this approach over time is my son didn’t learn to deal with stress and difficulty. I made sure everything was in place for a smooth experience or we didn’t go. As long as everything was within his comfort zone, he was fine. If anything happened outside the comfort zone – disaster – melt down. He needed a balance between reasonable comfort and challenge.
I needed to help him learn how to handle discomfort – learn to deal with stress in more appropriate ways. Again, no “special” world, simply one world, populated by loud, crowds of people.
We did eventually figure it out with the help of a great behaviorist. Today, Joey’s tolerances are higher and his melt downs fewer and less dramatic. His ability to manage stress is better and we made the choice to use medication for high stress situations – usually involving crowds or something chaotic like large, family gatherings.
The decision to use medication as a tool, was made with Joey, his doctor and other involved professionals. Prior to what I know will be a high stress situation, I ask Joey if he needs a pill to help him and Joey decides whether or not to use his prescribed medication.
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