Being a mother is tough. Unless you are wealthy and can afford servants and nannies, it's also exhausting. If you are the mother of a special needs child, it's ten times harder.
I was inspired to write this post by this blog from a special needs mom.
You have to be your child's guardian angel, counselor, coach, tutor, and most important - his advocate.
I've encountered people who thought I was being silly, ridiculous, overly picky, and every other adjective - because I was trying to look out for my kids. Yet, they didn't try to mother special needs children. They had NO IDEA what we face every day.
Most folks have no idea how mentally, physically, and emotionally exhausting it is to parent a child who is special needs.
I always tell people I have two special needs kids. Michael's special need - his missing hand - is the easier thing to manage. My daughter's issues [PTSD, Auditory Processing issues, probable ADHD and mild FAS] were much more difficult. I take comfort and inspiration from fellow adoptive moms like Cindy Bodie.She truly understands - her kids, most of them, have a lot of diagnoses, too. She often talks about how her kids are attractive and usually well behaved, but their early trauma left so much residual damage.
I found out the other day from my friend Kristy that my daughter's Central Auditory Processing Disorder should have meant she had a 504 plan for school. Instead, she had an IEP. If she had had the 504 plan, I would've been able to get better accommodations for her in school. She failed some classes because some of the teachers didn't care about her issues, and weren't willing to adjust anything to help her in the classroom. But during 2006-2010 when I was dealing with it all, I didn't know that.
I am struggling with feeling bad about this. When I allow myself to think about it, I cry. I was truly doing my best for my daughter, trying and trying to help her. Yet I failed.
Perhaps if Alesia had not failed some classes, if school had been less stressful, she might have stayed away from drugs. She might not have had such severe emotional issues. If I had just fought harder, maybr found a different therapist, maybe we wouldn't be estranged now. I have not seen my daughter in more than two years. Drugs have wrecked our relationship.
Everyone says "You did your best, that's all anyone could have done." Yes. That's true. I felt like I did my best. I took her to therapy. I tried to help her with schoolwork. I tried to re-teach things she didn't understand. I struggled for balance with her issues and Michael's issues.
Adopting a 13 year old who spoke no English was a huge challenge. HUGE. Add in a complete lack of knowledge of how to be a "normal" American kid, and a lot of trust issues.
She didn't know how to be my kid and I struggled equally hard to be a good mom. Most of the time, when I tried to talk to her, she mentally zoned out. It was a reflex, the therapist said. When Alesia is stressed or hearing something she doesn't like, she goes almost catatonic. She doesn't later recall anything that was said. Telling her things over and over didn't help. It was years before I realized it.
Michael is by far the easier child to manage, but he still requires a lot of mothering. Example - Last night at 10 p.m. I was informed that he had no soap in his bathroom, and no dental floss. When I was 17 I would've simply told Mom I needed soap before the bar disappeared, and she would've gotten it at the store. Michael pays no attention to such boring details of life.Maybe that's just boy. I don't know. But it means there is still work to be done, teaching moments left, in abundance.
I was telling a friend last night, I wish there was a website where parents could figure out their child's issues, and have resources.
There would be lists of behaviors that you could see, to see if your child has an Auditory Processing Disorder, or Sensory Issues, or even Autism. There would be links to other websites, lists of therapists, even a directory of education law attorneys in each state.There would be local chapters of support groups.
There would be a section for teachers, ideas to help them understand how to help the special needs child in the classroom.
There would be clear explanations of 504 plans and IEPs.
The hope would be for the website to be a real community of help and support for all moms and dads of all kids with special needs.
I haven't figured out how to make this dream a reality, but I am working on it.
I am motivated by my own difficult journey, the one I am still on. Ten years ago, I didn't know how to parent children who had been in orphanages, who had been traumatized, who needed a lot of TLC. I had to figure everything out on my own. I thought some days I was going crazy. I was always tired. I was always being pulled in so many directions. I had no time for my own friends, or interests.
I would like to make things easier for others.
If you have any thoughts on this, please feel free to leave me a comment.
