"Success is stumbling from failure to failure with no loss of enthusiasm." - Winston Churchill
|With Bianca at 13 months. Before she regressed.|
When Bianca was 12-13 months old (before her regression) she was ahead of the curve on a lot of things. One of those things was labeling.
One of my favorite things to do with Bianca when she was a baby was to grab one of her favorite picture books and flip the pages as she pointed to and told me the names of ALL of the animals. It also became one of the things that made me angriest about the regression… that it took that from us. Bianca became more content chewing on a book than she was labeling once her regression started to kick in.
I would grab her favorite book and sit down with her and witness the gradual decay in her ability and/or interest in labeling. She lost the words altogether eventually. Asking her to participate in an activity became futile. She was much more content to be on her own and to become engrossed in trying to find any microscopic crumb on the floor to mouth. It would depress the hell out of me.
Still, you move on.
I accepted it eventually. I always remind myself to not fret over the things that are out of my control and this whole regression business was well beyond my ability to influence. But while there was acceptance, we never stopped trying. We never gave up. We respected Bianca’s desire to be solitary while lightly pushing activities and inclusion in play time with the family. Her siblings are not so respectful. I think that is a good thing. They constantly force the issue and MAKE Bianca play. Sometimes it resulted in Sofie or Luis getting a well-placed head-butt. The venture on though, not letting the incident deter them because they know that there are many other times that the play results in deep belly laughs that they all get to share together. Those moments are absolutely priceless.
I can see the head-butt coming, so I manage to avoid them… usually. When I play with Binks I try to keep it really light, while educating her at the same time. I request that she uses her words now. I request that she uses sentences and phrases. It takes some doing. It takes a lot of patience, but it pays HUGE dividends.
After 6 years, I am now able to participate again in my favorite activity with Bianca. I can look back at the time that the skill set was not there, and it doesn’t even bother me anymore. Why? Because from the first that we realized that she was autistic I KNEW that she smart. I KNEW that she was brilliant. It isn’t a matter of intelligence; this is a matter of us trying to find ways to communicate on HER level. This is about loving her the way she is but hoping for the best. This is about time, repetition, patience and love. This is about a team of therapists, teachers and paras CARING for my daughter and guiding her back to a place where she used to be.
For me, it is also a source of pride. I am so proud of Bianca. I see her trying every day. She is an amazing kid with a whole world ahead of her. Sure we still have bad days… we have code browns, head-butting windows, eloping and mouthing issues, but when something good happens you have to acknowledge it. So that is what I am doing… and I am sharing it with you because I know through the countless emails, comments and tweets that you care and will revel in the pride with me.
I also know that many of you may come to this blog at the very beginning of your journey and while you are sitting there feeling depressed and afraid I want you to know that things do get better with time. I can’t promise you to what extent or in what manner, but they will.
Way to go Binks! Daddy is SO proud of you! Here is to the future!
… Whatever it may hold.