Coming to accept that your child has a disorder is a huge challenge…an even bigger one is when some of those you depend for love and support negate your fears and concerns and belittle all the work being done to help your child…the speech therapy, the occupational therapy, the research and the list goes on.
I became quite accustomed to having my concerns dismissed when Henry was younger. My mother’s intuition was telling me something wasn’t right. I felt there was something more to his lack of speech. At that time I heard all of the cliches…”he will talk when he’s ready”, “boys talk later than girls”, ” your cousin Billy didn’t talk until he was four and he turned out just fine” or “Einstein didn’t talk until he was 3!” During those early months of investigation of Henry’s delay, I had a gut instinct, but at the same time these comments were making me doubt myself. I regularly teetered between believing 100% something was really wrong and thinking maybe I could be wrong. This is even after evaluations from private and state speech therapists supported my gut feeling. It’s amazing the negative power your family and friends can have even when in their own way they mean well.
This lack of support and comments of us “overreacting” continued for months. Then as time passed, and we got more information and finally a diagnosis, most friends and family came on board. They acknowledged that yes, there is something wrong and agreed early intervention was best. Then there were others, starting to panic because they too didn’t want anything to be wrong with Henry. So they were constantly suggesting things I should and shouldn’t be doing. For instance, “You talk too much for him, you make it easy for him not to talk”, “sign language is keeping him from talking” to even “aren’t you practicing at home? don’t you talk to him? read him books??!”. This really began to wear on me. I was still processing the situation, figuring out a game plan for treatment and was mentally exhausted by the schedule of therapy appointments, research and phone battles with the insurance companies. The last thing I needed was to defend what I’m doing or be made to feel like I’m at fault for Henry’s lack of speech. This created a lot of stress for me, but luckily I no longer doubted what I was doing. The more I read, the more therapy sessions I observed, the more I knew we did the right thing with early intervention and I don’t regret it.
It’s been almost a year since this whole thing started. The negative comments for the most part have disappeared. I think that is why two recent incidents hit me hard and took me by surprise. The first came from my husbands friend and it was delivered simply by phone message. “I hope you aren’t sitting around on the couch waiting for your son to talk. Get him outside to play with other kids”. Something to that effect. There was just something so crass and ugly about this message, and this came from my husband’s ” best friend”. I couldn’t understand it. This was obviously coming from someone who was ignorant to the situation and didn’t take the time to listen to my husband all of these months when he was sharing what we were going through. Come to find out this person believed this was a made up disorder, that we considered our child “retarded” and because of that we were keeping him from some age appropriate activities such as getting outside and playing with other kids. I was livid! Most of the time I take the higher road and don’t even acknowledge this ignorant b.s., but I had to say something. Passing judgment on our parenting abilities was just the beginning of what was wrong with this picture, but most of all he was talking about my precious son. I couldn’t approach my husband for a phone # to let this guy have it, he would never give it to me. So I emailed him. It went back and forth a couple of times and although I got an apology, I couldn’t shake the anger. I’m sure it was build up of all of the comments over the months…this one being by far the worse.
Fast forward two weeks. I’m in my parents living room with Henry sharing with them some progress he has made recently. The latest victory was him learning to say “hi”. So Henry said hi, and later said “baby” which was one of his other recent words. This started a whole argument with my father, starting with a comment he has said many times before. “See, he’s talking. He’s fine. There’s nothing wrong with him”. He wasn’t celebrating his progress, he was negating the situation. This always irritated me because no matter how much I explained he didn’t really hear what I was saying. I gave up on that months ago. I know that much of it is out of his fear… not wanting anything to be wrong. And partly I feel it’s generational. Many elders feel our generation over parent, over diagnose, overreact. So I try to step back most of the time and not take it too personally. But then he followed it with a bunch of comments about how we waste our time with all of these appointments, that I run around and cry and worry for nothing. That he’s just talking on his own when he’s ready…dismissing the months of work it has taken Henry with the help of therapy and his parents to say “hi”. I don’t know, more was said that I can’t recall but I lost it on my dad. I blew up at his ignorance and his dismissal of everything we have worked so hard on. It got ugly and I’m sure he really deep down didn’t mean to hurt me, but I also know he believes every word that he said.
It’s important to mention there are also many, many people who have given us full love and support from the beginning. I just have to realize that even with all of the hard work it’s been for all of us and how much hard work is still ahead, not everyone is going to understand and support us. All I can do is continue on the path of treatment I know is right for Henry and love my son to pieces. How could I not?