As parents, we celebrate all of our children's accomplishments. In the beginning, with Jack, I was completely clueless. He was such an early talker, and as a first time mom, I was oblivious to the fact that other kids weren't developing at the same rate- until I took him to playgroup, where he would want nothing to do with the other kids, but would talk "at" all of the adults in full sentences, at 18 months. And the other moms would say things like, "excuse me while I go kill myself". My little boy genius. It took awhile for me to realize that he did not truly understand most of what he was saying. To this day, scripting is a huge part of our lives, and people who don't know him too well say how brilliant he is. Which he is. But that's not why he is spouting those facts out rapid fire every day. That is his comfort, his script.
Watching him learn how to read this past couple of years has been absolutely amazing. I now have a different point of reference, Nate. And watching Jack learn how to read is in many ways like watching him learn how to talk all over again. I just have a whole different level of appreciation for my kids' accomplishments these days.
Nate's development, like many kids with moderate to severe autism, has been such a roller coaster. Two steps forward, five steps back, another five steps back, four steps forward, and then freeze frame, repeat. My level of fear far outweighs my need for hope at this point- to put it another way I am absolutely AFRAID to hope.
At some point though, you have to make a decision. Are you going to live your life feeling this anxiety, or are you going to do everything you can to put that fear aside and allow yourself to enjoy these positive moments, however fleeting they may be? Can you allow yourself to enjoy your child saying new words when you know they may never say them again, or they may disappear tomorrow? Well, it's really really tough. But you have to find a way. Right?
I am trying really hard to do this. When I first started this blog, I would jump on when Nate would start saying new words, and say things like "I hope this is it!" Maybe you haven't noticed, but I have stopped doing this. It's too scary. It's never "it". I don't think there is any such thing anymore. I don't believe anyone who tells me Nate's speech is just going to "take off." John and I sit and talk at night about how weird it would be to have Nate walk up to us and just start talking. It would be freaky at this point (don't get me wrong, I would get over it)
He IS developing though. He really is. It's just in slow motion. The accomplishments are things that with Jack, I never even noticed. But they are there, and now I have to admit it. It is absolutely fascinating. For instance, Nate is obsessed with peek a boo right now. And it's not the object permanence thing, it is the interaction piece. He LOVES to see your reaction, to be surprised, to do it again and again. This may seem like a small thing, but it is not. It is Nate realizing his actions can have an impact, that he can affect his environment. Yesterday he hid behind my bedroom door when it was time to go downstairs in the morning. I found him laughing hysterically, hiding. He knew he was going to surprise me and was anticipating it. Now, he is super interested in doors- he stood in his bedroom this morning opening the door, looking behind it, closing it, getting down on his knees and looking under it. It's like it's the first time he has ever realized the impact of a door, even though he has been opening and closing them for a long time.
Watching Nate finally notice his environment like this- it's just crazy. When Nate hits a milestone like this, my joy almost happens in reverse. It's like- wait, oh my gosh, I never even realized he wasn't noticing this before. I can't believe he wasn't noticing this before! But wait, he is noticing it now! And for now, that is enough.
Watching him learn how to read this past couple of years has been absolutely amazing. I now have a different point of reference, Nate. And watching Jack learn how to read is in many ways like watching him learn how to talk all over again. I just have a whole different level of appreciation for my kids' accomplishments these days.
Nate's development, like many kids with moderate to severe autism, has been such a roller coaster. Two steps forward, five steps back, another five steps back, four steps forward, and then freeze frame, repeat. My level of fear far outweighs my need for hope at this point- to put it another way I am absolutely AFRAID to hope.
At some point though, you have to make a decision. Are you going to live your life feeling this anxiety, or are you going to do everything you can to put that fear aside and allow yourself to enjoy these positive moments, however fleeting they may be? Can you allow yourself to enjoy your child saying new words when you know they may never say them again, or they may disappear tomorrow? Well, it's really really tough. But you have to find a way. Right?
I am trying really hard to do this. When I first started this blog, I would jump on when Nate would start saying new words, and say things like "I hope this is it!" Maybe you haven't noticed, but I have stopped doing this. It's too scary. It's never "it". I don't think there is any such thing anymore. I don't believe anyone who tells me Nate's speech is just going to "take off." John and I sit and talk at night about how weird it would be to have Nate walk up to us and just start talking. It would be freaky at this point (don't get me wrong, I would get over it)
He IS developing though. He really is. It's just in slow motion. The accomplishments are things that with Jack, I never even noticed. But they are there, and now I have to admit it. It is absolutely fascinating. For instance, Nate is obsessed with peek a boo right now. And it's not the object permanence thing, it is the interaction piece. He LOVES to see your reaction, to be surprised, to do it again and again. This may seem like a small thing, but it is not. It is Nate realizing his actions can have an impact, that he can affect his environment. Yesterday he hid behind my bedroom door when it was time to go downstairs in the morning. I found him laughing hysterically, hiding. He knew he was going to surprise me and was anticipating it. Now, he is super interested in doors- he stood in his bedroom this morning opening the door, looking behind it, closing it, getting down on his knees and looking under it. It's like it's the first time he has ever realized the impact of a door, even though he has been opening and closing them for a long time.
Watching Nate finally notice his environment like this- it's just crazy. When Nate hits a milestone like this, my joy almost happens in reverse. It's like- wait, oh my gosh, I never even realized he wasn't noticing this before. I can't believe he wasn't noticing this before! But wait, he is noticing it now! And for now, that is enough.
I read this and my heart is open. My husband and I too talk about our son at night. I too struggle to live in the moment and worry less about the future. It is easier said than done. Peek-a-boo was the one thing my son did as a child that made me feel he was just like everyone else. He loves the surprise face still today, and dreads all of the others. I just wanted you to know that you are not alone. When my mother died of cancer, I vowed never to let grief take over my life as I had seen it do to others. I thought it would be an insult to her, not to live life to the fullest. My hope is that now, I can do the same with worry. It is infinitely harder, but it is a battle I must win!! For the sake of my children, I must fight the worry demon and hold it at bay. I never want to look back and wonder what I missed while I was worrying. I have not defeated it yet, but I continue to fight. From one soldier to another, battle on!
ReplyDeleteTeaching a child with moderate to severe autism is an extremely slow process, but the more time you put in, the better the result. School time is not enough.
ReplyDeleteFor example if you want to teach basic math, it is a job 7 days a week and 12 months a year. Eventually it really does sink in and when you ask him to add 13 + 20 + 12 he gets the right answer. If you stop work at home for a couple of months, all is forgotten Fortunately there are great on line resources to help, like whizz.com for math. If you look at home schooling websites you can get big discounts for these things.
If you apply the findings from Stanford (NAC), Johns Hopkins (Sulforaphane) and this one from France
http://www.nature.com/tp/journal/v2/n12/full/tp2012124a.html
your progress will be much faster and family quality life will be much improved.