Every time I tell someone my son is disabled I always get, “Oh, I’m so sorry.” My response is always, don’t be sorry, my son is an amazing kid. I am incredibly grateful for my son and all of the things he has taught me.
He is 9 and is still learning to walk, communicate, etc. Those big things aren’t what really get to me as his mom at the end of the day. It’s the little things.
He was 4 years old the first time he called me mommy. You don’t realize how much that means to you until hearing it isn’t an option. He had a huge vocabulary. He could repeat words, including the word mommy. But he had never looked at me and called me “mommy” until that day. It still brings tears to my eyes when I think about it.
My son doesn’t really feel the need to show affection. This means very few hugs and no kisses. If you have gotten an unsolicited hug from my son, you are one of the few. I have gotten less than 20 in his 9 years. If you ask him for a hug he will lean against you and make the “hug sound.” If you ask for a kiss, he will hold his hand up to your mouth. He expects you to kiss his hand. Almost the reverse of blowing a kiss.
There is very little spontaneous conversation with my son. Most conversations are repeats of conversations you have had before or something he heard somewhere else. This is tough in two ways. First and foremost, I would love to know what he is really thinking. How he is really feeling. Every time you ask him how he is feeling… alway
s, without fail the answer is Happy. Even when he is clearly upset about something. Second, the repeat doesn’t stop. He will repeat the same question 50 times in 5 minutes. No exaggeration. I’ve learned a lot of patience from my son, but that is trying. Especially when you are also trying to talk on the phone or complete some other task.
What I have to remember out of all of this is that everything I have listed above are things that are hard for ME. He is perfectly happy with things the way they are. I’m the one that has to adjust. Apparently even with everything my son has taught me, there is still more.