The saying, “it takes a village to raise a child” is so incredibly true especially when it comes to raising a child with any intellectual, developmental or physical disability. In the case of raising Joey, along with the support from all of our family and friends, our village began to grow shortly after birth when he started with Birth to Three (aka Early Intervention in some areas of the US). He started out getting weekly physical, and occupational therapy. Then a few months later speech therapy and a teacher joined the group. By the age of 1, these visits were 1-3 a week per therapist!
Along with help from all of his therapists since shortly after birth, Joey has seen a wide varity of doctors including a pediatrician, geneticist, cardiologist, otolaryngologist (ENT), gastroenterologist, ophthalmologist, urologist, orthodontist, behaviorist, developmental neuropsychologist, audiologist, and orthopedist (and I’m sure there’s more I’ve forgotten about). But I have to say, I truly can’t complain. There’s parents who have children who have seen way more doctors than my child will ever see….
We are also blessed that our insurance covers home health care for Jojoe. We are so blessed that we’ve had the same CNA coming to our house for the past 3 years, 5 days a week. Since Joey likes to try to sneak off (he’s a wanderer/eloper),he can also destroy a room in 5 seconds flat, and rip off a dirty diaper as soon as I turn my back, she’s a huge help! Without her, I wouldn’t be able to cook dinner or keep the house as clean as I do.
At three years old, Joey left the Birth to Three program and started in preschool through our local school system and has been at a local elementary school in our town since then. Through the public schools, along with this PT, OT, and ST, he also gets help from his regular education teacher, special education teacher, numerous paraprofessionals, teacher’s assistants, art, gym and music teachers.
I’m grateful for all of these people who work hard to provide services and medical care not only for my child but for everyone. They work long hours (some of which they don’t even get paid for) and don’t get nearly enough recognition.
Along with all of the people I’ve mentioned, also part of our village is fellow special needs parents. Without my DS moms, I would be LOST! Especially the ones who have older children that I’ve been able to turn to for advice on parenting a child with Down syndrome. While I was still pregnant with Joey, we joined the Connecticut Down Syndrome Congress. I owe so much to those families who helped to guide me all of these years! If there’s one piece of advice I have for new and expecting families of children who have Down syndrome, contact your local DS group, they are your best and number one ally. I have a list I’m working on of local DS groups around the US you can find here.
Through our church, I’ve met so many wonderful people, including a handful of special needs families who have the same Catholic beliefs as us. Whenever Joey is sick and in the hospital or has a scheduled surgery, it just takes a quick call to our priest to pray for Joey. And the power of prayer works!
And obviously, our families. I have to say, it doesn’t matter how far away they live, family is family and we’ve always been able to depend on our family for anything day and night. The same goes for our friends, especially my group of best friends. I would be LOST without their support!
So, when I say it takes a village to raise a special needs child, I truly mean it. Without the help from everyone over the past 10 1/2 years, Joey wouldn’t be who he is today and I would be one tired momma probably with a lot more grey hairs and wrinkles.