Now, I know a mother’s love hides a lot of imperfections and that Caroline can be a lot to handle but she is so much than a label and deserves to be treated as such. I frequently explain that John, my husband, is the ladies biggest fan; in his eyes they are perfect. I am their biggest advocate. This is an important distinction because as their biggest advocate not only do I make sure that the ladies have what they need to be successful in life, including room to fail but I also need to be aware of their shortcomings to make sure we are addressing them in an appropriate way.
One of the most trying experiences of my life thus far has been trying to arrange care for Caroline. When she was about a year old and I first started looking for a daycare setting no one would accept her because of her feeding tube. So we had to hire a nanny. When Caroline turned 2, the school Vivian attended agreed to accept Caroline but that was after I visited over 18 schools. The schools that would accept Caroline were WAY over my price range and would only accept her conditionally. The schools I could afford removed her from consideration from the word “feeding tube.” Then when we moved to Texas and added the label of autism the rejection got even stronger…at least three centers told me that there are special schools for kids like Caroline. Yes, yes there are special schools and most of them have waiting lists that are at least a year long. But everything worked out in Texas because we found Kristen. Now fast forward to the search in Cleveland Heights for care.
First, I posted adds on Sittercity and Care.com for a nanny. In the first ad I mentioned that Caroline has a developmental delay and her primary form of communication is sign language but failed to mention autism. Two people removed their application as soon as they heard the word—without meeting Caroline. Then we found a grad student who was studying social work and has a brother with Asperger’s—she seemed to get along with Caroline—I was ready to celebrate! Not so fast. After one day, she said “Kacie, I don’t think this is going to work. I didn’t realize how stressful and physically demanding it would be to keep up Caroline.” Ummm okay, I thought has my heart simultaneously sunk to my stomach and burned with anger. I asked her if she could finish the week so I could try to find a replacement. “I have IBS and the stress of caring for Caroline is causing a flare up—today will be my last day,” she responded. Okay, I really don’t want someone spending time with Caroline who doesn’t want to but this left me in a very tough position. I interviewed 5 more potential candidates who I didn’t feel were a good fit or who ended up accepting other positions. I called the school that we want to enroll Caroline this fall to see if they would accept Caroline immediately—they would not—could not because of staffing. But at this point, rejection is rejection.
This rejection hurt more than not getting asked to the Homecoming dance my freshman year of high school and not getting that job I REALLY wanted combined. As a mother, I am pretty sure it is always harder to deal with your kids’ rejection. This rejection is particularly harsh because the admissions’ staff is not rejecting Caroline but rather their idea of Caroline which is predicated on the premise Caroline is nothing more than an autism stereotype or focusing on her feeding tube rather than her. When you know one person with autism, you know one person with autism.
Autism is not only isolating for the person with the diagnosis but I am learning it can be very isolating for her family. I don’t think Caroline minds the rejection in fact I am pretty sure she doesn’t but I mind. But I do and I am fairly certain when Caroline is rejected I feel the pain enough for both of us.
As I was reading this I was thinking about how anxiety ridden I would be just at the idea of finding someone I could trust alone with my kids, add in the additional stresses you feel and I am overwhelmed with sympathy for you. Mom sympathy, not pity!
ReplyDeleteI honestly find it shocking that today in this era of Autism awareness you would be hit with so many walls. Have you thought about finding a support group in your area. Perhaps that is a good network of sources?
I wish I had something to offer you other than my empathy. Rejection aimed our kiddos is the worst kind. You are not alone there.
http://www.myautismteam.com
ReplyDeleteI was very angry with the parent of my Autistic boy this year because they only told me he had a speech disability. I was able to recognize something related to sensory processing was going on by the second day of school. I went and spoke with the school psychologist and she was able to look up his IEP and told me yes, he's autistic. When I mentioned this student to another teacher that I worked with and respect greatly, her reaction made me understand why the parents might not have wanted to be completely honest with me. Every single teacher's initial reaction was "WHY is he in YOUR class?!?!" I can't count the number of times I had to explain that he functions very well in a regular education setting and has no need to be in a self-contained room. And these are trained professionals.
ReplyDeleteMy heart breaks for you and your sweet family. There needs to be so much more education about differences between people in the world. I see it all the time, people just need to quit with the labeling of others. And after a school year with my Autistic student, I completely understand why his parents chose to withhold the full truth from me.
I just wanted to let you know that I understand your feelings of rejection, anxiety, frustration, panic, and even hopelessness! My daughter has no comprehension of when people reject her, but my heart still breaks! I wish that I had some real words of wisdom for you. Unfortunately, I can only offer my support and shoulder to cry on! I'm hoping and praying that you will get the situation worked out to your satisfaction!
ReplyDeleteDeidre thank you for your kind words. Sometimes, it helps so much to know that I am not alone and that not everyone or even most people don't feel this way. Also thanks for the link to myautismteam.com I have been there on and off over the last year. I think it is a great resource!
ReplyDeleteIt is definitely a decision point every time as to whether or not we reveal Caroline's diagnosis because some people become so focused on the diagnosis they no longer see Caroline. I am so glad to know that there are teachers like you. Caroline has been very lucky to have amazing teachers who meet her where she is and view her as an individual.
ReplyDeleteThank you so much for your kinds words and support. I don't know if it hurts more because Caroline doesn't care or doesn't understand that people are rejecting but it sure seems like it does. I am sure we will find a good situation for her--this has just been a really rough summer.
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