Liz Petruzzi
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.
[1]Photo: Petruzzi Family, (left to right)
Liz, Mark and Joey Petruzzi
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).
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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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3 Things I Did Right!
We Gave Joey a childhood – For a long time, our whole life was therapy, doctor appointments, consultations, tutoring, etc. When Joey was around 8 or 9, I decided we needed a change.
We made the decision to drop some therapies in favor of scouting club, play dates and t-ball. Ladders were scary for us and challenging for Joey, so we had an adaptive swing set built for the backyard with ramps, slides and swings. We got a dog.
As I look back through photo albums, I see camping trips, outings to the zoo, ice cream cones dripping down his arm. I see a childhood. The decision to take a step back was scary and even felt a tad irresponsible. I can tell you years later, it was the right decision.
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If this seems a contradiction to what I’ve already shared, I should mention, I controlled and managed details and there were meltdowns. It wasn’t perfect but it’s a decision I’m glad I made.
We Gave Joey Chores – Joey has always had challenges. What’s easy for most people is really hard for him. He has motor planning and balance issues, processing challenges. However, I realized it was important for his sense of self worth to have ways to pitch in and help.
Today, Joey makes his own bed, cleans and organizes his room, does his own laundry, puts his clothes away, cleans his bathroom sink, helps carry groceries in, empties his trash, clears the table, puts dishes in the dishwasher, occasionally helps with food prep, brings the garbage and recycle bins in from the curb. For the most part, he loves to do these things and is proud of his contributions.
We Planned for the Future – The scariest part of having a son with special needs is his future after we’re gone. If you have a child with special needs, this requires no further explanation. It’s been my number one concern since the day he was born.
Something we did right – we took out universal life insurance policies and invested small amounts of money in mutual funds early.
Disclaimer – I am not a financial or insurance expert nor am I an advisor.
There is a lot of information and resources available – everyone’s situation and needs are different – my best advice is to find an experienced expert to advise you.
For some families, term life insurance is the smart thing. It’s inexpensive and the term is generally twenty years – it protects the family while children are young and dependent.
We knew we needed life insurance forever. We needed life insurance to fund our son’s life after we’re gone. We chose universal life insurance – a form of whole life insurance for a few reasons – it never goes away as long as you pay your premiums, the premiums don’t increase as you age and again, as long as you pay your premiums, if your health situation changes, it won’t get canceled.
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Our family chose to create a will and a third party, special needs trust. We did this through an attorney who specializes in estate planning for people who have family members with special needs.
We created an “All things Joe” manual. The manual lists everything from his doctors to his favorite restaurants, food to the clothing sizes he wears, where he gets his hair cut, a day in his life, how he likes his eggs cooked – everything. The idea is if we were suddenly taken away by aliens, people helping Joe have the information they need to make him comfortable. This manual gets updated every January to insure current information.
The various legal vehicles are confusing – it took us over a year to get everything in order and I’m sure we will be tweaking details indefinitely. Our plan isn’t perfect, but it’s the best we can do and Joey will be taken care of to the best of our ability.
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As a family, we continue to learn and grow. Our current challenge is transitioning from parenting Joey and viewing him as our child to the current reality.
Instead of a child, we now have an adult family member who lives with us. I often challenge myself with the idea of, “if my grandmother lived with us and was rude, would I take her phone?” Of course not – yet, Joey has been our child longer than he’s been a young adult. Being Joey’s mom is still a process, I still make mistakes but every so often, I get something right.
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Liz Petruzzi is a writer, wife and mom who loves coffee, the beach and her dog. Liz became a full time mom again in 2012 when her son aged out of the school system. In addition to supporting her son, Liz writes about life and faith on her blog, lizpetruzzi.com [9].
Helpful Articles
- Early Intervention: First Steps in the Right Direction [10]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [11]
- Advocating: What You Need to Know to Become a Better Advocate [12]
- Empowering Your Child’s Best Advocate: You [13]
- Developing Your Own Network [14]
- When Mom Crosses the Finish Line [15]
- Real Moms Share: Overcoming Obstacles and Meeting Milestones [16]
- How Do You Talk to Your Child About Their Diagnosis? [17]
- A Story of Inspiration: How Vernon Changed My Perception of Disability [18]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [19]
- I Do Not like Being a Special Needs Parent and That’s OK [20]
- Coping with the Life You Never Imagined [21]
This post originally appeared on our July/August 2018 Magazine [22]