Being the parent of a special needs child is not easy. You find you have an abundance of patience you never knew you had, a voice that can be loud when advocating for your child since he cannot speak for himself, and strength and stamina as caring for a special needs child can be quite exhausting at times. But there are also many rewards. You will never look at life the same way again and learn to appreciate even the smallest accomplishments. Just seeing Jimmy happy and content is all I need.
I love my “Jimmers,” as I call him, and while he is not verbal he certainly knows how to make his needs known. When he is happy he will clap his hands, and tap his feet on the floor. I call those his “Happy Feet.” When I hear him “OOOING” I know all is good in his world. When Jimmy does not want to do something, he squawks at me. A good example is when I make him brush his teeth. He gets over being mad quickly though.
When Jimmy was 3 years old we knew that he would need specialized care. That is when we enrolled him in the Beekman Center, one of the few options in this area for children like Jimmy. Even though this was the right choice for him, putting him on the bus for the first time was so hard. I know I cried all the way to work that day and cried one and off most of the day. He just seemed so little and the bus seemed so big! Jimmy was so little and vulnerable. I felt like I was sending him off to strangers but I knew he would be in good hands.
The program at Beekman was helpful but we needed to cover the care gap after school. It was essential that my husband and I be able to work, both for financial reasons and for personal social reasons. I enjoy getting out and going to work and need that adult interaction. I have made many special friendships over the years with the people I work with.
At first, we turned to after school care in a private home. That was until the day I came to pick up Jimmy and he was crying which was very unusual for him. My mother’s intuition told me something was just not right. Not long after that Jimmy slipped out of the yard through an unlocked gate, something he had never done before. My heart sank! All I could think of was the “what ifs” that could have happened. Jimmy is defenseless and cannot fight back. He could easily be taken advantage of. I knew a change had to be made and went searching for a better solution. That was 20 years ago when we came to trust the organization then known as Lap Respite Center, now Helping Hands Respite Care.
In that time Jimmy has been well cared for over the years in various versions of the after school program. Having Helping Hands Respite care as part of our team has been an important part of Jimmy’s overall care plan. It is hard to explain the peace and confidence I feel being able to go to work knowing that Jimmy is in good hands and is in a safe and loving environment. It also brings me comfort that the staff at Helping Hands is fully trained to meet Jimmy’s individual needs.
Not too long ago Jimmy turned 26 and aged out of the Beekman Center program. The after school program, called Breaking Barriers Today, located at the Gier Community Center, has been a great environment for Jimmy. Jimmy loves it there! The staff has also been resourceful and worked very hard to accommodate our need for more care. The alternative would be having Jimmy at home and even though he would receive good in home care, there would not be enough stimulation and interaction like he receives at the Breaking Barriers program. He needs structure and a routine and so do I.
My husband and I are so grateful for the care and support we get from Helping Hands Respite Care. I know Jimmy is at the right place as I pull into the parking lot at Gier and I hear his “Happy Feet” tapping away in the back seat. It is music to my ears! I honestly do not know what we would have done without their help over the years.
And the respite is not only for Jimmy, but for my husband and I too. Sometimes we will take a day off work and just enjoy what we want to do while Jimmy is being cared for. It may seem like a small thing to most but it is vital for our well-being.
Our hope for the future is that Jimmy’s care will continue with Helping Hands. It has always been our goal to keep Jimmy living at home with us and Helping Hands Respite Care is helping us achieve that goal. We feel so blessed to have Helping Hands Respite Care as a huge part of our lives now and hopefully for years to come.