Dane is three and half years old and for almost all three and a half years I have known that something was off.
I verbalized this regularly to family and friends mostly because that’s what I do–say out loud everything I think or feel or worry about. That’s how I know what I’m even feeling or thinking–I hear it come out of my mouth (or read what I’ve written). People were always quick to tell me I was wrong. They said I was worrying about Dane for no reason. They always had a story about their cousin Jimmy who was a late talker. They talked about that girl they knew who never spoke until she went to school because her big sister always spoke for her.
Those people had good intentions and I do not fault them, but I should have listened to my own inner voice because I was right and they were wrong. That’s one of the many things I’ve learned from all of this– the importance of listening to my inner voice. I need to listen closely to the Spirit because the Spirit usually whispers and those whispers can sometimes get drowned out by the noise of the world around me.
The really scary (and really beautiful) part I’m learning is this: even if I had listened to my intuition early on nothing would be different today because I am not in control and I cannot change this. I cannot change Dane and I cannot “fix” him because he is exactly as God made him and he does not need my fixing. He is a gift. A perfect gift–just as he is.
I’m getting ahead of myself. Let me back up.
Dane is a happy, gorgeous boy. His big brown eyes and his infectious smile always seem to gain the attention and admiration of strangers. He spots the stranger eyeing him and he’s always quick to smile and wave and then it happens…. the thing that breaks off a piece of my heart each time, the thing I wish would never happen again, the thing that reminds me smack dab in the middle of a day where I have almost forgotten. The stranger asks Dane “What’s your name?”
It’s a fair question and I do not fault the stranger. It just breaks my heart because Dane does not know.
He does not know how to answer that question and a three and a half year old should know how to answer that question.
He knows his name is Dane. If you call him by his name, he will answer to it. He knows my name is Mama and he knows his sisters’ names and his dad’s name. Heck, he even knows the neighborhood dog’s name. What he does not know is what the word “name” means. He doesn’t know how to answer “What’s your name?” despite all of us working with him every single day. He doesn’t know because it’s very hard for him to learn this and many other things that most kids learn easily.
“What’s your name?” is a constant reminder and sometimes I just don’t want to be reminded.
About 6 months ago I made an appointment for a speech screening. Most people had a hard time understanding the few words Dane said and I knew he probably needed speech therapy. I will not go into the details of those weeks or the emotions that accompanied them, that’s a different post for a different day. I will only tell you that I cried during the evaluation and I cried after when I received the results. Dane tested at the same level as a 15 month old–two years younger than his age. During the testing process, the Speech Therapist made a comment in passing that Juliet would soon be catching up with Dane.
Juliet is exactly two years younger than Dane. That broke my heart.
And, now, here we are almost six months later, and Juliet is almost caught up with her older brother. Juliet knows her animal sounds and she repeats words with almost zero prompting. She learns language without anyone intentionally teaching it to her and because of her advancing at a typical rate, I am reminded that Dane is not advancing at a typical rate. I am reminded that he does not know his animal sounds. He does not know his animals, even.
And I am sad. I am sad because I love him and I want the best for him and I do not want him to struggle-ever.
And, if I’m being really, really honest, I am heartbroken because I just want to be able to have a conversation with him. That’s all I want. Screw colors and animals. All I want is a freaking conversation. I cannot wait for the day when I can have a conversation with him. I want to know what he thinks, how his day was, who he likes, who he doesn’t like. I want to know if he had fun or if he hated his day. I want to know what he’s thinking. I want him to ask me “why, mama?” a million times a day.
I was recently at the mall talking to this grandmother and she was telling me about how she was considering switching schools because her grandson is in a “reverse mainstream” classroom and he is learning bad habits from the “slow kids.” She explained that a reverse mainstream class is where you stick “normal kids in with kids who have IEPs.” She even went on to tell me that one of the boys in her grandson’s class wears a diaper–at age 4. She was outraged by this.
Now, whether her grandson is learning bad habits from the children who learn typically or from the developmentally delayed children, I do not know. Maybe her grandson is just a typical 5 year old who is testing his boundaries. Maybe the children with the learning difficulties have nothing to do with it. Maybe they have everything to do with it. I do not know.
What I do know is that I did not like how comfortable she felt using the word “normal” and speaking about the boy in a diaper. Did I set her straight? No, I did not. I didn’t because I know she was coming from a good place, she was processing how she was feeling about her grandson’s situation and I know her words were not meant for me.
Was I outraged that she was talking in this way? Not really. Was I hurt? A little, but I knew it wasn’t personal. Mostly, I was sad. I was sad that she did not know that the kid with the IEP who still wears a diaper at 4 could be her kid.
I know this because he is mine. And, at one time, I was just like her. I thought those kids were other. It never occurred to me that one day my kid might be in Special Ed. No one ever told me.
“Special Ed” was hard to swallow. Marvin and I used to do this thing where we called it “Special Education” so that we could pretend that Dane wasn’t like those other Special Ed kids– his was Special EDUCATION. You do what you need to do to process, I guess.
We were a little bit like that grandmother at the mall. There was us and there was them. We know now there is no us and them– there is only ALL of us.
I am learning so much from this experience. I am learning that Dane is a great kid and he is mine. And he is who he is. And I do not know what the future holds for him and I do not need to know because right now we are doing the best we can and tomorrow we will do the best we can and hopefully the next day we will do the best we can. That’s all we can do, the best we can.
I hope no one ever feels comfortable talking to me about those kids again because now you all know I have one.
I hope I remember always that I am not in control, and, more importantly, I hope I remember that it’s a GREAT thing I am not in control. God’s much better at this gig than I am.
I hope Dane is happy and healthy. I hope we model love, kindness and acceptance. I hope he is exactly who God created him to be. I hope I don’t get in his way. I hope when I do, inevitably get in his way, that I am quick to forgive myself.
I even hope people keep making me uncomfortable by asking Dane what his name is because one day he will answer them.
Throughout this entire process it has blown me away how God has put the right people in our path to help us. These people have literally carried me through and I do not know what I would have done without them. There have been too many people to mention here, but of the many I must acknowledge two.
I do not know what I would’ve done without Erin allowing me to cry into the telephone. She was patient with me as I unpacked what this whole thing meant for Dane. She allowed me to say exactly how I felt and she never once treated me as if I was being dramatic. She validated that what I was going through was hard now and would continue to be hard later. I needed to be heard and she heard me at a time when no one else was hearing me. She has been an important person in my life for many years, but her support and guidance during this time will be something I remember for the rest of my life.
Without Mindy’s reassurance that everything was going to be ok, I may have gone crazy. When I find myself slipping into despair she pulls me out and reminds me that everything is fine and will be fine. She has given me the information I needed with no sugar coating. As counter intuitive as this may sound, the best thing she ever did was tell me “it’s going to be a while” when I asked her when I could expect to have a conversation with Dane. I needed her honesty then and I need it now. I am so proud to call her my friend, and I am grateful that she is in our lives–especially Dane’s.
So, that’s it. That was my post about this part of Dane that is not bad and is not good–it just is. Where the future will take him we do not know, and that is ok.