Families never plan to have a child with disabilities. There are those of us who belong to that club, though no choosing of our own. What we do now and in the future is the hard part.
There are few things as devastating as a doctor or other professional telling you that your child has a disability. We all, at the least, want our child to be equal to their peers. What happens when they are not? A lot of that depends on us as their family. Each family is as similar as they are different. We all face hardships, some more than others. There are financial concerns and marital and family problems due to the stress of caring for this child. Some will have to deal with depression and other individual problems that are too many to list. We just have to remember that as an individual dealing with these concerns‚ we are not alone and we all work with these difficulties in varying degrees. Some families will find others who fit in the same “cubbyhole” of similar diagnosis, others fall into a type of, what I like to call, “orphan disability.” My son, Brad, is one of those orphans. Most physical disabilities seem to morph into each other, or at the least, include diagnosis for example, Cerebral Palsy. Personally, I find Cerebral Palsy a term that some professionals want to plug on my son as he got older, because a few of his physical symptoms match the guidelines. That is one of the first questions asked since he has aged and in a wheelchair. Brad falls through the cracks when it comes to definition of disability. He does not fit into any cubbyhole of distinct diagnosis. I personally find that extremely challenging when dealing with medical and education professionals. They want to know his diagnosis so they can put him in a cubbyhole for them to make decisions on what they need to do. Over the years‚ I have found myself sitting there with a look on my face as if I had no idea of what they were saying. I then stumble around trying to explain his disability. To be honest with you, there are not a lot of specialists who are familiar with what I am talking about when I say to them, “he was born with Agenesis of the Corpus Callosum.” They do understand that he had bacterial B-strep meningitis at 14 days of age. At 3 months he contracted endocarditis. He has had numerous, too many to count, bacterial blood infections, pneumonias and other things that are just too many to go into while making my point here. There just is not a cubbyhole for that. I suppose if there is anything positive, saying your child fits into a molded diagnosis, is they, at least, fit into a distinctive category that physicians are able to follow known guidelines. On top of dealing with the obvious challenges of caring for a child with a disability, the orphan family struggles as a square peg that everyone attempts to put in to a round hole. In theory, the different category of disabilities have organizations that support research, funding and what have you for the families to tap into for the child’s particular identifying disorder. The orphan families find themselves wandering around in the wilderness of not knowing what direction to take, much less who to turn to because there is no category for them.
As a parent of an orphan, I find that in dealing with all of the out of normal problems we have, I personally feel that there are a number of mandatory things when attempting to manage your child’s health, education and overall welfare. This goes for all families who deal with disabilities. Most importantly overall is support. I cannot emphasize enough the importance of support. Your spouse, other children, extended family members, friends, church members, an organized support group or whomever you can depend on. Whoever it is, use any or all, whatever floats your boat. Just use them. One thing that I can tell you is that you cannot do it all on your own. You can try, but, you are going to wear yourself down and burn out. Been there and done that! If the main caregiver can’t function, the whole machine breaks down. The machine has to have maintenance to run efficiently. That ‘s you. You, at least, have to have that support system in place for short periods. Once you are able to wrap your mind around the idea that things are going to be different with a disabled child in your family, the main caregiver needs to sit down to discuss a realistic plan of action. I hope that by now you’ve assembled a number of your support group and let them know how important their job is to you and make sure they are up to the job.
Tip: Try to join at least 3 support groups. 2 related to your child’s disability and one unrelated. The information & support gained may be priceless.
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