We have heard the saying, “Life is like a box of chocolates.” We never know how life unfolds.
Approximately 20% of the U.S. population has a disability, and that affects 1 in 5 families. For a family with a disabled child, the reality can come with challenges: isolation, fatigue, financial concerns and hopelessness. I am writing this blog to offer some options to help with your journey, Mamas.
Isolation
My daughter and I attended mommy and me socials. I noticed that she was not talking like the other children. I did not want to say anything to the other mothers so I expressed my concerns to the pediatrician. The first pediatrician told me I was being sensitive, and to relax. After a few months, I decided to get a second opinion, this time I was heard.
There were limited resources during that time, which meant no support groups. I used the excuse of specialist visits, and daily life expectations to pull away from the mommy and me group. This was an easy way for me to avoid questions I did not have answers to [at the time].
Do yourself a favor. Find a group that meets your needs. You will feel less lonely on your parent journey. I felt like I was the only parent dealing with these circumstances. I had one advantage; I was a teacher, and I spent my personal breaks watching, learning, and asking questions.
Without others guidance, I would not have been an effective parent.
Fatigue
Having a child with a disability does not allow you to get off the merry-go-round of life. Mortgages have to be paid, food needs to be bought, and life does not stop. I remember sitting in the lobby of John Hopkins waiting for my daughter to be tested, and get an official diagnosis. I discovered that when certain fabrics touched her skin she screamed, potty training took a bit longer, or giving her dessert, first, calmly allowed her to eat dinner.
Additionally, my older daughter still needed help with her homework, class projects, or social events. She asked to participate in Girl Scouts, and was excited when invited to sleepovers, birthday parties, and looked forward to summer camp.
Do not be afraid to seek help from a trusted family member, friends, neighbors or colleagues. It is okay to tell yourself and others that you need some time for your own thoughts, dreams and goals.
Finances
Research indicates it is more expensive to raise children with disabilities. The numbers vary, but most sources agree its at least 3 times more [than children without disabilities]. My daughter was not able to stay with her peers in the swimming or ski schools; however, she did learn to swim and ski because I found individuals who were willing to help her learn recreational skills, and that allowed her to participate with the family.
I discovered a private school which accepted children with learning disabilities; they helped her learn needed concepts in reading, writing, math and science. She grew and learned without a state test telling us she had to repeat third grade without knowing [and understanding] our struggles.
Hopelessness
There is always the question of what’s next? What will happen when they grow up? What will their life be when I’m no longer around? These are the questions that keep many parents up at night.
I am choosing to be an optimist, and believe the solutions will come. I have watched the disabled community grow from limited resources to people developing podcasts, equine therapy, more private schools for students with disabilities, advancement in medical specialists, and disability trust funds. I believe the list will continue to grow.
My daughter is a well-adjusted adult with a job who drives, and has her own views and opinions. I believe the disabled community will change society for the better.
