"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.
If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.
No comments:
Post a Comment