If you are reading this, then you are probably well aware of the struggles families face raising a child with special healthcare needs. There are so many struggles it's hard even to list them all: emotional, financial, the strain on siblings, the strain on marriages. And that's only a few.
The statistics say it all. The rate of divorce in this country is astronomical, and the rate of divorce among parents of children with disabilities is even higher—especially if you have a child on the autism spectrum.
After 24 years of marriage, my husband and I are still one of the couples who are not one of the statistics! Although I must say it is not easy. The lack of sleep, the puberty tantrums, the multiple doctor appointments, the disagreements over treatment choices, etc. (Did I mention the endless tantrums??)
My husband and I have learned to take a team approach with our son, especially as he gets older and bigger and can take me down at any given moment. I never realized how much I relied on my husband until he was laid off in the oil field bust this year and had to take a night job to support the family. I became the person who took up the slack. After the past 6 months, I can honestly say I have no idea how single parents do it.
Waking up at all hours of the night with my son, wrestling him like an alligator in the bathtub to brush his teeth, cleaning up mess after mess, and then trying to go to work looking like a person and not a zombie is quite the challenge.
Luckily, my husband regained a day job. We are back to our regular duties, but the stresses remain. The lack of sleep remains. The emotional toll remains.
But now I have my partner back to share it with.
I have always appreciated the notion that you never plan on having a child with a disability. It's like you get on a plane bound for Hawaii and you end up getting off in Amsterdam. You know nothing about Amsterdam, but you learn as you go.
Thank you to my dear husband for being on this trip to Amsterdam with me! I can't imagine this trip with anyone else.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.