Liz Petruzzi 3 Things I Did Wrong… and 3 Things I Did Right!
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.
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.
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.
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.
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.