You are ill. Your child has special needs? Now what?

It is not big secret that recently I was diagnosed and am recovering from a very curable form of thyroid cancer.  I have had amazing support from family and friends who have helped me to weather this storm.  I also am the mom of two very self- sufficient and independent adult children.  They too have been a help and not a hinderance to my recovery.  Yet, I couldn’t help but to think that if this scenario had happened ten years ago or more what would I do? Who would have taken care of my kids while I was undergoing treatment and while my husband traversed the country for business?

How does a parent of school or preschool aged children handle the day to day care of their family when they can barely make it from the bed to the bathroom?  How can you recover and regroup yourself when their is breakfast to be prepared, shoes to be tied, homework to be completed and so on…  And what if you had a child who had special needs such as Autism, physical challenges or was totally dependent on you for a host of other reasons.  Then what?  I know that many people are fortunate and can rely on family , friends, associates via work or places of worship to help them during times of need, such as dealing with a long term illness.  But, will those same people be available, able and prepared to help your family if you have a non-communicative, highly dependent on adult supervision , non- toilet trained five year old?  And if not- who will?

I feel like I am the pitcher at a ball game.  Throwing out questions and awaiting answers.  If you have any way to help educate others in your area who may need assistance with parenting while ill, please comment below.

Thanks for reading-  Louise

 

2 thoughts

  1. Louise…you make a great pitcher, because those are excellent questions. Many families with a child (or children) with special needs live a life of isolation. Obviously, this is difficult in a situation, such as you suggest. For those families, the professionals that have helped educate or helped diagnose that child may be your biggest ally; as well as any relationships you may have formed through support groups for parents of special needs children.

    You local doctors office or social services department can be helpful by possibly referring you to a list of respite care providers. They may even have a foster parent who is trained to care for medically fragile individuals and is willing to provide services for a fee.

    Let’s not forget that great group of special education teachers who help educate your child. Is it possible to get them to come and help with your child during a parents hospitalization or recovery period? If not, they may know of another who is trained & skilled who would be willing to help out. Many teachers are experiencing job lay offs and might just be willing to help out during a time such as this.

    Last but not least, think about some of your local support groups or organizations that can be of service to a family who is struggling to provide income; while going through a medical crisis and, trying to care for a youngster with special needs.

    A Big Brother/Big Sister volunteer or, if you are lucky enough to live in a college/university town where they educate young adults to become professional educators…you may be able to find a teacher in training who has plans to teach special needs individuals who is looking for some hands on training.

    These are just some creative ideas bouncing around in my head. I hope they help someone to think outside of the box if they should ever find themselves in the position that you describe. It is hard enough to go through medical situations but for those of us who have special needs children…it is traumatizing to think of how to help your child cope with everyday situations while you do your best to heal and regroup. Best wishes Louise, as always!

  2. Louise,
    Last year I was sick, and unable to drive for 6 months. I have 5 young children. Two of those children were involved in individual therapy through a local umbrella group that provides everything from individual therapy to intensive educational placements where the children live at the school.
    For several weeks I was unable to organize and supervise the children’s homework time and the time until their father came home from work. The therapy group, in this case, Villa Maria, would have come into my home to help their “clients” through these activities and therapeutic playtime on a regular basis as a part of their client’s over-all well being.
    If your child is involved in this type of educational or therapeutic situation, it can benefit the household in general until the crisis is over. Often it seems that the calmness of my home is dependent on how my child’s autism is that day.

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