Few people who are not parents of a special needs child will understand my story, yet few people who are parents of a special needs child will be unable to relate to my tale.
Life as the parent of a special needs child can be challenging, at best, and downright exasperating at worst. When your child’s case is extreme, the challenging days can feel like a blessing. It is also in the extreme cases that the parent can feel the most guilt, pressure, and worst of all, judgment from those (especially other parents) who have no clue. And then sometimes when your child is an extreme case, you have to make the most difficult decision ever in your heart of hearts.
My special needs child is my son by marriage. Many would call him my step-son, however I have put more time, expense, and effort into raising this child than those a bore from my body, so “step” does not even come into my vocabulary when it comes to this child. I say that to assure readers that biology has nothing to do with how I care for this child; I care for him as much as I care for my biological children. My son is an extreme case; he has a list of diagnoses that continues to grow as each year goes by and there may not be an end in sight for a few more years yet… All of this adds up to the fact that he has extreme behaviors.
Two years ago, after two years of trying, my husband and I were finally able to get our son into the school setting that best fits his needs. This placement has brought some progress into our lives, though the progress is minimal, it is yet progress. I would love to be able to say that finding the proper schooling has made things better overall, but I cannot. My son’s current school setting has made him a little more manageable at school, but he continues to have extreme behaviors at home and at school.
Over the past 4 years, my son’s issues have dominated my family. In spite of my efforts to see that it is not the case, the majority of the adult attention, energy, and effort goes toward managing my son’s needs and behaviors. This means that although we have other children, my husband and I have often been required to put the needs of our other children, as well as ourselves and our family, on hold as we work to manage my son’s escalating needs and behaviors. I am not proud of the fact that the entire family has to suffer for the sake of one person, however no matter what we do, someone has to miss out.
Without going into a lot of detail, it has become apparent that sacrificing all to save the one is not helping him or anyone involved (not that I ever believed it would). My son still has the same difficulties and challenges he had when he came to live in my home and although we have made some progress with him, I cannot honestly say that it has been worth the losses and sacrifices we have had to bear as a family. Now before you judge me on that saying, I’m not talking about monetary losses or the loss of things that can be replaced (believe me when I say there are many things that fit that category); my husband, my other children, and I have endured all types of abuse, heartache, and struggles for the sake of my son. To say that we have made sacrifices is an understatement. Knowing all that we’ve gone through and seeing how little benefit has come about as a result makes me question whether it has really been worth it.
Over the past three months, my family has been working with a new agency. We’ve had an increase in specialists, tests, providers and workers… They all agree that my son will never get better. No matter how much we sacrifice, no matter how much effort and energy we put into his care, assistance, and happiness he will never get better; this means that all my family has given up has been ultimately for naught. I don’t by any means regret anything I’ve done for my son, however I do regret everything my other children have had to go through.
There comes a time when we all reach our breaking point. A person can only endure so much before it is all too much. My is at its breaking point. As of today, my family has withstood as much as we can without completely falling apart. We all love my son very much; there are times, however, when loving means letting go… The time has come for us to let go.
Every parent wants all of their children to be successful. I am no different. I would like nothing more than to see all of my children succeed. I am rational enough to realize that this is not always the case and that this will not be the case for all of my children. I am also realistic enough to admit that if we continue to sacrifice as much as we have for the one child we will lose them all. While my son has an entire system (a flawed system it may be) to help take care of him, my other children have only my husband and myself to care for them. It is my duty, as their mother, to assure that I care for them all. In this case, it means letting go of my son to embrace my other children.
I am not by any means saying that I will no longer care for my son. I will continue to care for him as much as I am able. I am saying, however, that it is time for me to take a step back from doing more than I am ultimately able and forcing the system to do what it is designed to do; this may ultimately mean that my son will be placed in a residential setting outside of my home. While it sounds obvious that the special needs system should do everything it can to assure that my son has what he needs to be as successful as he can be, any parent with a special needs child can tell you that the system does not often function that way. While I know my son needs the system on his side, I also know that getting them to do their part is going to be difficult and will likely require as much hardship as we have already incurred.
Seeing all of my children reach the level of accomplishment I know they are able to achieve is something I look forward to. While it means dealing with feelings of guilt, shame, hopelessness, failure and other things many can’t begin to imagine, for my family loving my son means letting him go. Every parent and family has to let one another go at some point in life; for my family, the time has come sooner than any of us ever could have imagined and under circumstances none of us ever desired.