If you are on the outside looking in on special needs families, we want you to know and understand us. We may not know how to tell you what we feel. We wonder if you really want to hear it. Many days we look brave on the outside but are dying inside.
Our world can be scary and is almost always uncertain, making us feel even lonelier. Whether doctors confirm a special needs diagnosis near the time of birth, or whether testing confirms it once a child flounders in school, fear and confusion follow.
What does the future hold? How did this happen? Why my child? How will we/he/she cope? What happens to my child when I’m gone? Why do others reject our reality? Will they reject us and how long will it take? In our most private moments, we may even wonder: why, God?
Depending on the severity of the diagnosis, we may always feel as though we are outsiders looking in on your lives. Oftentimes we ponder what it would be like to be a ‘normal’ family.
We know you grapple for the right thing to say and time to say it. It’s o.k. to walk with us and say nothing. We just want someone to listen to our fears, dreams, and thoughts. Don’t judge us for what we say in moments of stress and fatigue. Tell us we are doing a hard, often thankless, job in a courageous way and how proud you are of our efforts.
Give us permission and support when we have to choose a quieter way of life. Give us time to grow into new and easier phases of life. Did you know saying “no” is one of the saddest things we do? It reminds us how different we are.
Don’t criticize us if we awkwardly bow out of busy family events and spur-of-the-moment outings. Please forgive us if we fail to invite you over or never seem able to accept your kind invitations. Please respect us for understanding our child’s limitations, needs, and routines. Being with you is a good thing, but sometimes it overwhelms our child. Admire us for having the courage to say “no” to a good thing when it’s necessary.
We look forward to a day when we can say, “Yes,” and embrace the opportunities you take for granted. As we and our children mature in our journey, your patience will empower us to take on new challenges and try out our wings.
Thank you for your optimism on behalf of our child. We are equally hopeful. Please understand that when your optimism seems like denial, our burden becomes so much harder. It was hard for us to accept our child’s reality. It’s hard to understand, but your denial reminds us of that pain all over again.
Please consider that the demands on our family rob us of things you take for granted. A quick, and solo, trip to the grocery store may be the closest thing we get to date night or a mani-pedi. Rather than chiding us for neglecting ourselves and our marriage, ask how you can help us find time for personal refreshment.
Do you remember what it was like to be a child and know you had been left out? We know it’s easier to relate to less-complicated children, but our special needs kids need you too.
It seems like a contradiction in terms, we know, when we turn down big events and then say, “We need you! Include us!” Remember how I said life got confusing when we got a diagnosis? If you ask us, we can help you frame a special visit or outing and create a win-win for all of us. It may be as simple as helping you recognize signs of over-stimulation to avoid a meltdown. Meltdowns happen, but they aren’t the end of the world. We can show you the art of recovery if you give us a chance.
If you trust our instincts and let us lead the way, we can teach you what our lives are like. We’ll show you how we make life doable. In the process, maybe we will each feel a little less like we are always on the outside looking in.
by Carol Anne Swett
Reprinted with permission from Hedua.com
Carol Anne Swett is a Homeschool Mom who has faced various trials. She writes from her heart to encourage and share life with other Moms in the midst of life. She blogs at Confessions of a Fraidy Cat and is a contributor for Hedua.com