By Roxie Todd
My daughter is forty-years-old and she has autism. We didn’t know she had autism until she was in her mid-twenties. Believe me, we knew something was different, we just didn’t know what it was. We had been to specialists from the time she was three-years-old looking for answers, each time receiving a different diagnosis, never the correct one. No one knew what autism was back then, let alone that there was a spectrum.
Life was pretty cruel to my daughter in her childhood. She didn’t get along with anyone. She had a difficult time in school and had no friends. She spent hours alone in her room because she had no one to play with. My life centered around trying to keep her at grade level in school, keeping her on whatever special diet was recommended, and worrying, worrying, worrying. I put my life on hold for eighteen years, so that I could do my best to make sure that my daughter had a life. My friends had no clue what I was going through, her grandparents didn’t understand, and I felt very alone. My daughter's neurologist, seeing the toll that caregiving was taking on me, prescribed ME anti-anxiety meds and anti-depressants.
When she graduated from high school and began to work, my daughter was fired from every job she had. Her former principal suggested that she might qualify for vocational rehabilitation services. She received a little help getting employment, but not enough. She was very good at masking her condition until she became frustrated, which, in turn, would get her fired from the job. Eventually, we had her tested by a psychologist to see if she qualified for government assistance. This was when we found out that she was on the autism spectrum. As difficult as it was to hear, we were all relieved to put a name to what our whole family had been struggling to understand all of those years. We realized that she had a legitimate reason to act the way that she did. We also gained so much insight into how she thinks and how we could best communicate with her.
Now at forty, my daughter lives at home and receives Social Security benefits, Medicare and Medicaid. Her benefits are not enough for her to live on. They’re more of a nice gesture than an income that can support a modest lifestyle. Due to her autism and other conditions she is unable to live independently. We have been fortunate that we can support her financially. The path to employment was a traumatic one, and because of this, she volunteers at the local hospital instead. Even though it’s an unpaid position, it’s meaningful work and she feels a healthy sense of pride. She also helps me care for our three-year-old grandchild, her niece, and they are best friends. My daughter finally has a friend!
Life is so much better now. We are all much calmer and happier. My relationships with both of my daughters and my husband are better. The best part is that the relationship between my two girls, which was strained throughout the years, has healed. The old saying “What doesn’t kill you makes you stronger” comes to mind. All the angst, stress, hopelessness, and downright despair the whole family went through for years turned around. We now live in harmony…most of the time.
What changed? The pressure is off now. No more school or getting fired from a job and the anxiety that all brought. We’ve written our wills and set up trusts for our girls. We are fortunate that her sister, Lauren, wants to take care of her when the day comes that we can’t. For so many, this is not the case.
If our daughter had been born 20-30 years later, I’m sure we wouldn’t have had near as many struggles. We didn’t know why she was different and neither did anyone else. That was the worst part. We didn’t have support groups or organizations to help us along the way. It is so important that organizations like NEXT for AUTISM continue to create programs for people with autism. Not only do these programs help the individuals, they also help create a sense of security for the family members.
For those of you who are just starting this journey, I encourage you to get all the help there is out there. Join support groups and check out what autism groups offer. Get good legal advice for the future. When your child is old enough to work, get her the support she needs to succeed in her job. There is help out there now. TAKE IT!
Roxie Todd is still a family caregiver. She lives is Ohio and is the mother of Lauren Todd Steinbacher who is the Director of Corporate Consulting at NEXT for AUTISM.