This is how our neurologist appt started on Monday. Dr Kojic sat Dallas on the table and he looked at her and with the sweetest voice asked her that. Tears welled up in my eyes. Tears for so many reasons.
What a journey this has been the last almost 2 years.
The hard part is that I feel like I'm in the darkness. Someone has tied my hands behind my back, taken my voice away and told me to parent this child. I have no idea what I'm doing.
My heart aches.
My brain hurts.
And I feel all alone.
A friend of ours who has 2 kids with Aspergers said, "Parents who has a downs syndrome baby have people look at them and know that somethings different. But parents look at an Aspergers kid and think the parents are bad parents." Because to most anyone you won't see anything at all different in Dallas. He is high functioning and goes along like all other kids. But there are some things different behind the scenes that only those who are close enough and with him enough notice and pick up on.
And I just keep coming back to Dallas' question, "Are you going to fix me." (Mommy tears.....more mommy tears.) Dr Kojic and I quickly said to him, "There's nothing wrong with you Dallas. You are PERFECT just the way you are!!" He smiled and seemed to quickly move on. But I'm still stuck....stuck with this phrase ringing in my ears.
Today was a hard day. A lot of days are hard days lately. Trying to get through to him about things he's doing wrong is hard. When the heat of the moment comes he goes right back to his automatic response, which I'm reading is normal for Aspie kids. (I haven't yet gotten to the chapter on ways to help correct this problem. )
But after he's calmed down he always gives more love than most people are capable of. His compassion overflows. His heart is so genuine and transparent. He can bring so much frustration to me.....and yet the most joy I've ever experienced. And I know that he will be fine. It's not like he has a life threatening illness or some tragic problem. It's just something that is hard. Something that will take work from him and from me. But it will also be something that makes him the most amazing person that he is. Something that will stand him above others. Will make him more successful. Make him love more than others know how. He will be a light in other's darkness.
And for now I will continue to live for those joy moments in the midst of the challenging days. I'll focus on how amazing at sharing he is. How quickly he forgives others. How much he looks out for me and for his brothers. How much he misses me while he's at school. His limitless hugs. His perfect smile. His perfect self. Because he is perfect!
Cricket, thanks for sharing your story. You are doing the best thing for Dallas and that is getting him help. I think so many people are ashamed or too proud to seek therapy and you know what is the right thing for your family. I also really appreciate you using this forum as a way to raise awareness. As someone who does not have children, I know I can be one of those judgmental people that your friend spoke about. You are making all of your readers so much better off and you are making us better people. So THANK YOU for helping me to be a better person and fixing me :)
ReplyDeletewe have heard the same comments from our 2 with Asperger's they often think there is something "wrong" with them since we are continually trying to "fix" the next thing...you are right that somedays i seem to know what to do and the next day I have no idea what I am doing...
ReplyDeleteWhen your son has a meltdown in a public place you feel as thought all eyes are on you and are just waiting for how you will respond. Just remember that you heavenly father is looking down at you and smiling at how you are becoming such a woman of excellence an a terrific mom...Love ya girl