Sacrifice

Recently, a local business tried to host an “Autism Awareness/ Special Needs Night” for the community. The event allowed two hours at their facility. They said that parents would only need to pay if they were participating with their child. Parents that were spectators didn’t have to pay. Many Special Need’s Parents were upset about this. One mother wrote, “I do not get the option to be a spectator. I am a Special Needs Mom. I have to be right next to my child throughout the day. You do not understand the sacrifices we have to make for our children. To charge us extra when you are hosting a Special Need’s Night is crazy.”

The business ended up making some changes to the parent fee after listening to some parents, and apologized. But, this situation really made me realize that the outside world really has no idea how many sacrifices parents of Special Need’s Kids really make. So, I decided to touch base on a few:

1) Choice to work/ go to school

A lot of parents who have children with Special Needs choose not to work because of the child’s schedule and needs. Special Need’s Parents spend a lot of their time at therapy, doctor appointments, and providing care for their child. Recently, I had a friend who had to cut back on her work schedule and work part time, so she could be more involved in her child’s therapy. I had another friend take a break from pursuing her degree, so that, she could keep up with her daughter’s recent increase of doctor’s appointments and evaluations. Since my son started therapy, I had to stop consulting, writing curriculum, and speaking at teaching conventions. I decided that it was more important for me to continue his therapy over into our home and spend more time working with him. When my daughter was born and had Special Needs too, I no longer had the time to even consider picking it back up.

I have also known parents who had to work more and put their child in care of someone else, so they can afford to pay the entire medical and therapy bills. I was told by one mom that she wished she had the opportunity to be actively involved in her child’s therapy, but their family cannot afford it. She cried to me about the guilt she sometimes feels for not being as present as she wants to be.

2) Choice to move

            Moving is also not simple with a Special Need’s Child. When you have a child with Special Needs, you count on the whole community for help and support. You have support from therapy, team of doctors, and Special Need’s groups. Each state has different testing and considerations for funding. Moving requires starting over from scratch and rebuilding your community of support. It also requires taking a chance on funding and qualifying for therapy. Recently, one of my friends was asked why she didn’t just move to another state to try a new treatment for her son. Her answer was simple; she couldn’t uproot her support system. We also had battles with the choice to move. My husband has been offered promotions and different opportunities that he has declined because moving would not only uproot our support, but it would also risk our kids’ qualifications and funding.

3) Choice in schedule

            Special Needs Children have a tight schedule of therapies and doctor’s appointments. Even though we would rather be doing something else, if we did, then we would miss time on our child’s treatment. Special Need’s Kids also need more structure than the typical child, and do not adapt well to change. If we want to see our child progressing, we do not have much choice in our schedule. We have to get the therapy times available and work our lives around our child’s treatment times.

4) Choice to be a spectator

            Depending upon a child’s needs a parent might not have a choice to be a spectator. The child might need support moving around, balancing, changing surfaces, or communicating with others. The child might also need support for their behavior or responding to others or different situations.

5) Choice in bills

            Not all therapy, evaluations, and medical equipment is covered by insurance. A lot of Special Need’s Parents pay out of pocket for services and equipment that they believe will help their child. Supporting a Special Needs child can get expensive.

6) Choice in free time

The most important one is probably making time for themselves. It is so important for Special Need’s Parents to make some time for them. One of the best ways you can help support a Special Need’s Family is to help the parents have some free time.

 

Special Need’s Parents make sacrifices daily for their children. But every one of these parents would say that it is worth it to watch their child blossom and grow. I think that is why each milestone reached and each new accomplishment, no matter how small, is extremely significant because of the sacrifice made to get there.