It is not going away. The autism, that is. No matter how much progress she has made, or continues to make. No matter how much the expressive language gap is narrowed, or how reciprocal the conversations may be. It will always be there. The obsessions, the rituals. The rigidity, the inflexible thinking, the poor frustration tolerance, the emotional reactivity, the perseveration. These things will continue to impact her relationships with peers, people in the community, our family.
I have spent the last year of my life telling myself that if we give her an extra year in preschool she will be caught up. The issues will be resolved, the gaps filled in. I foolishly let myself believe the autism would simply disappear.
Let me be clear about something. I fully accept who my daughter is, autism and all. I respect her neurological differences and am so proud of how she has overcome the many challenges she has already faced in her young life. I love her silly sense of humor and the unique way she views the world. It is just so hard to see her struggle, to push people away, especially those who love her the most.
9 comments:
Sending hugs and nods of understanding.
i know. oh how i know.
it hits me like an anvil to the chest every once in a while.
but here's the thing .. all those challenges that you mention - each and every one of them - you are giving her the tools to mitigate. maybe not eliminate, but at the very least alleviate ...
and loving her exactly as she is at every turn .. well, she can't lose now can she?
I agree with Jess 100%. You are giving her the tools and the skills to ease her way. Not eliminate the hardship or the challenge, but to smooth over the rough patches. And yes, you love her, w/o condition, and this alone is enough to carry her through some seriously difficult times.
I completely understand.
For me, coming to the realization of my children's limits (both of my daughters are on the spectrum) has actually been somewhat of a relief. I no longer feel I need to frantically play "catch up" and can just let them do what they are able to do and give them as much support and love along the way.
It took me a long time to "get this"...I mean, I always loved my son, and would do anything in my power for him, but I was always looking for the cure...
I get what you're saying...hugs to you
This is a tough realization. I think we all want to believe that our children's challenges will go away.
You know, this is why I do not like the term "developmental delay" b/c it implies that all kids catch up. There is not one path. Kate is paving her own, unique way. It is not smooth, but it is hers and it is one of the many reason that you love her.
I have thought all afternoon about what to comment here. I am impressed at your candor about your heartache. The thing I keep thinking is that Kate is such a strong person. She has come through so much with her spirit and personality intact, I can't help but think that she is going to use her neurological differences and somehow not just get past them, but use them. In little ways, she already does. She is obsessed with the clock, but she uses it to get where she wants to be on time! She is too stubborn and hard working to not get exactly what she wants in this world.
I am so glad you shared this because as moms we all feel this way. I think the feeling comes in waves.
We go through times feeling so positive and then it hits ...hard. At least that is how it goes for me most of the time. I love my daughter too just as she is but I would be lying if I did not wake up in the night sometimes worried about her future.
Wondering what would happen to her if something happened to me or J. No one else gets her like we do. All of those obsessions and rituals make her special to us but without us to help her I sometimes wonder. You know?
It can be totally overwhelming. I don't want to change who she is..I am crazy about her and so proud of her...but I pray she can be independent some day. Then, something happens and it is like a slap in the face, reminding me how far we have to go.
We are good moms because we have these feelings and concerns. I don't want to cure M and I don't think there is a cure anyway. That does not make my fears or concerns any less though.
I have stopped searching and frantically signing her up for therapies, etc. That comes in time.
Hugs. Thanks for sharing this. I have had a rough day with M today and it makes me feel less alone.
Thank you to all of you wonderful people for your support. I am so blessed to have "met" you!
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