Over two decades ago, I joyously became pregnant with my first child. At this time, I was a youngish special education teacher, teaching in a private, residential school for children who were dually diagnosed with intellectual disabilities and emotional disturbance. Despite their disabilities which sometimes caused them to have episodes of impetuosity causing mayhem amongst themselves and others, I adored these children. They had the most outgoing and endearing personalities. Eventually all who work with these children learn their triggers and physical signs that precede their pernicious moments. We learn tricks of the trade that lessen the incidents of pandemonium. Oddly, it never occurred to me that I could have a disabled child. One would think that since this was my career path I would be fearful of having a disabled child. I however genuinely cared for these children. I saw them as unique individuals who made every day brighter. As Meryl Streep once said, "What makes you different or weird-that's your strength." She is right.
Since this was a residential setting, I rarely saw the parents. Some of them no longer had parents because they just couldn't handle their child's total uniqueness. Either way, I have to applaud these parents as I do any parent with a disabled child. When one has a disabled child, they are facing new ground of the unknown. Bookstores are filled with books on how to parent normal children. but not much is written on how to care for a disabled child. I can't begin to imagine the numbing fear of giving birth to a child who is disabled. These parents have no choice but to trust the professionals who are working with their children. Giving up that control has to be terrifying. Regardless of the situation parents love their babies. Eventually most parents learn all about their child through the trials and tribulations of raising them. Still, throughout their child's life, they must jump through hoops going to each new professional in their child's life, and again and again explaining all of the things that makes their child meet his or her maximum potential. Doing this again and again takes so much courage and strength. Each time, they are handing their "baby" over to someone they just met. Some parents can't handle this so they make the decision to let go and let those who they perceive as having more knowledge than they do become guardians to their child. Either way, courage and tenacity are involved.
All parents the fear of letting go. The fear of the first day of daycare, kindergarten, middle school, high school, and college. Imagine if your child can't speak clearly or at all. This magnifies the fear. Imagine too that your child perceives the world slightly differently than it actually is. What does a parent to then? I have a few bits of advice:
1) Keep the communication line between your child' s professionals and yourself open. Have a journal that travels between home and school.
2) Make frequent phone calls. Ask the professional to call you when changes in your child are noticed.
3) Listen carefully to your child and their professional. If you have questions ask them. If you need a second opinion get one.
4) Don't be a bully. A parent who bullies makes everyone shut down including the child.
5) Remember the child is at the heart of the matter. The professionals who work with your child dedicate their lives to this profession because they believe in making a difference for you, and your child.
In the end, it's not only the parents with disabled children who have fear for their child. Parenting is difficult. There will be times in every parents life when they have to put their child in an unknown person's capable hands and trust them to give the best advice. Just remember as the parent, you may ask as many questions as you need to to get the right answer for your child. Also, not every professional will have the approach that your child needs, the professional already knows this, it's not a one size fits all world. Fear not getting second opinions. Do what is right for you and your child, while staying in control and thinking through your challenge in a respectful manner. In the end everyone will benefit from your diligence and conviction, especially your child.