No one truly understands the complexity of caring for a child with Muscular Dystrophy besides the parents and caregivers to them. You work so tirelessly to keep them safe and provide them with the most nurturing environment possible that, when you can’t be there, it is difficult to turn over control to another person. There is so much to worry about when you have a child. Caring for a child with muscular dystrophy has those same concerns times one-hundred. Finding the right nanny to care for your special needs child, someone who understands all that it really entails, is extremely difficult. Not only do you want someone who tends to their physical needs, but you want someone to tend to their emotional ones as well.
As a parent you are able to see through all the physical limitations that your child has to see the spirit and all the capabilities that they do have. You want someone to care for your child who has the same perspective. Often times nannies and babysitters are so overwhelmed by the medical aspects of a special needs child that they forget that underneath it all, they have the same needs and wants as any other child. Finding someone who can be imaginative, playful and tend to your child's desire to be just a child, may take a little extra time and energy.
It is difficult to know as a parent which is more important, to find someone medically qualified, or someone who has the personality traits that you desire most. Ideally you would like to find both, but that can take some time. Time is something that the parents of a special needs child with muscular dystrophy may not have a lot of. The truth is that to find the nanny who you can trust, you may have to compromise slightly on exactly what you want. No one is going to care for your child in the way that you do, but sometimes having someone else in your child’s life who is different, is exactly what they need. We would all like to shelter our children forever, but sometimes you have to let go just a little for their benefit.
If you don’t allow yourself time to get away, you aren’t going to be able to do the best job that you can. Sometimes taking care of your special needs child means taking care of yourself. That can only be done if you give up just a little control, and allow a babysitter to care for your child, so you can have some time to recoup. It is difficult to take time away, but to maintain your own health, you have to remember that you are a person too. To be the best parent you can be, you have to maintain your own sense of self.
If you aren’t completely comfortable with having a babysitter in your home, take baby steps. Once you find a childcare specialist who you think you can trust, have them come in for short periods of time so you can monitor their interactions and build trust. I suggest that you don’t stand over them, or make them feel watched. They can’t truly build a relationship with your child if you don’t allow them the alone time to do so. Give them time to bond with your child and to see how their interaction progresses, while silently staying on the sidelines.
In time you may find that you feel comfortable giving your nanny more control and liberty to act without you around. Once you see the rapport that they have with your child, the concern that they show, and how much they are able to enrich the life of your child with muscular dystrophy, it will no longer be stressful to have them come into your home, it will feel more like a relief to have an extra set of hands.
Even just an hour or two a week will give you the peace of mind to do things that you need to without always feeling guilty about where you are at. As a special needs parent myself, I know that no matter where I am, or what I am doing, I never feel secure that I am in the right place or doing the right thing. When you find a caregiver who you know makes your child happy, and adds something special to their day, the guilt disappears and a weight is lifted. Being able to find a childcare professional to care for your child with muscular dystrophy is one of the most liberating feelings you can have.
As a parent to a child with muscular dystrophy you have been through a lot already. You have necessarily had to take on more than you thought you would ever have to both physically and emotionally. It is alright to want, or to need, to turn over some control to a caregiver who will treat your child with the same love and compassion that you do. The right person will add so much more to your life, to your special needs child’s life and to your entire family environment.