Don't Love Me Too Much

I often wonder if as parents of children with disabilities we actually do more harm than good sometimes. Do we take care of our children too well? When we demand our schools include our children as much as possible with their non-disabled peers, are we doing as much as we can towards that same goal? Are we doing all we can to prepare our children for a life without us? Sometimes, I am not so sure.

When I see adults with cognitive disabilities, people in their 40’s and 50’s, still learning how to hang up their coats or how to cook, I start to worry about my children with cognitive disabilities. These adults were taken care of by their parents – well meaning, loving, caring people. Were they parents who refused to accept what the future held for their children, or were they just so busy with the day-to-day challenges of raising a child with disabilities that the future never got discussed or planned? What I do know is that every time I see a person in their midlife learning skills they could and should have acquired earlier, I re-examine what I am doing for my children. And although many other parents would see my child-rearing efforts as too strict and regimented, I have to stay strong in my convictions because I know all too well what the future holds.

When they reach the age of 12, every one of my children is responsible for doing their own laundry. That includes my children with disabilities as well as those without. It may take Ashley a little longer to learn the steps involved in laundry, but she will learn it. She may need some cues along the way, but she will learn it. They have to learn how to separate laundry by light and dark. They all have to learn how to hang up or put away those clothes once they are clean and dry. They have to learn how to cook. And learning to cook means learning how to clean up after cooking. They have to learn how to clean the house. For Ashley, especially, leaving toys strewn across the floor could easily cause a fall for her. My children all make their beds – some do a better job than others – but they all seem to like getting into a made bed each evening. They have to learn how to take care of their bathing and grooming. Ashley and Jessica may need some help in the form of grab bars and special cues so they don’t miss any of the steps involved in these personal tasks, but they need to know how to do them. All my children need to learn how to recognize when they need time alone, time to unwind and relax. These are skills that as adults we use frequently. They need to learn how to make phone calls and answer the phone as well as how to leave a message on a phone answering service. They need to learn manners and respectful behavior. And although most kids can figure this out on their own, they may need some help in learning how to have fun. As parents, we can help our children, especially our children with disabilities learn these things, but if we do it all for them, we are doing them a huge injustice. We can provide the necessary adaptations for our children with disabilities, but we cannot take away from them the joy of having completed an important task.

Another area where we perhaps unwittingly set our children with disabilities apart from their peers is the way we outfit them. When Ashley’s 5th grade teacher suggested I send a fanny pack for Ashley to wear on their community trips, I almost lost it. Why not just go ahead and put a sign on her back which points out how different she is than her non-disabled peers? As parents we have to stop opting for the easy way out. We have to know what the clothing styles are for our children’s peers. We have to stop buying them Velcro shoes and elastic waist pants. Dora the Explorer panties may have been cute for your four year old, but your 13 year old will be made fun of in the school restroom for wearing them. And yes, your 13 year old baby girl probably does need to start shaving her legs and underarms.

I will save the discussion of sexual matters and your teenage children with disabilities for another blog entry, but suffice it to say that your children are probably feeling and thinking the same sexual thoughts as their non-disabled peers. My 12 year old daughter with disabilities needs to understand her sexuality just as much as my 16 year old non-disabled son. I want them both to learn to say ‘NO’ until the time is right for them to say ‘YES’.

So, I think for myself, I will just try to raise my children with disabilities the same way I would raise my children without disabilities. I have high expectations for all my children, and I would be quite the hypocrite if I expected the rest of the world to respect those high expectations if I did not. And I will constantly remind myself to not take care of any of my children too well.