Let’s take a little trip back in time…..
Nearly 4 years ago we moved to Kenai not only to escape domestic violence but also because my daughter, Cecelia, needed help. I knew she was on the autism spectrum and at 3 years old she was not talking. We saw specialists and after months of evaluations and even a court battle we got her the services she needed.
She was diagnosed with Autism, severe receptive and expressive speech disorder and also suffered from sensory processing issues. The State of Alaska came in and evaluated her. They determined that she required the same level of care as a 15 month old toddler.
Since then she has received extensive speech therapy not only at school but also at a private therapy in addition to Occupational Therapy and Physical Therapy. Her waiver services provide her with day habilitation services, in-home supports and also respite for me.
We’ve been working very hard not only with all these therapies but also dietary changes and extensive supplement and vitamin research and use. Even some chelation but it’s hard as a single mom to keep up with a consistent chelation schedule.
Cecelia went from having 16-18 major meltdowns a day….in which I’d have to restrain her to keep her from hurting herself with her head banging or hurting me or her sister. We discovered that her sensory issues could be addressed with a SPIO suit, noise canceling earmuffs and sunglasses. Through extensive communication and consistency we got her “team” (teachers, therapists, waiver staff, and I) all on the same page to meet her needs and new goals each year or sometimes sooner as she began quickly completing/meeting the goals we set.
A couple weekends ago was the first major meltdown she’s had in over a year. We’re actually working on therapy strategies now to help her learn when to STOP talking because she chatters nonstop now. She chooses frequently to not wear her “eyes and ears” she no longer requires a SPIO suit. That last meltdown was different….rather than uncontrolled screaming she was screaming sentences and was able to talk herself out of the meltdown in less than 30 minutes.
Four years ago I never would have imagined that any of this was in the realm of possibility. Nor would I have imagined that her music teacher and 2nd grade SPED teacher would ask me if she could not only attend the Holiday Music Concert but also PARTICIPATE in it!! I was floored. This wasn’t in what I thought was even a possibility! I told her SPED teacher to let her keep practicing as if she’d attend but I was uncertain….undecided….was she really asking me this???
Later on I was shopping at the grocery store and ran into her music teacher. He told me how excited he was that she was going to participate in the concert. I admited to him that I was still undecided but asked her SPED teacher to keep letting her practice. He seemed surprised and hoped I’d let her attend. I went about my shopping and a couple minutes later he came and found me again and told me all that they had been working on. He told me that he was confident that Cece could participate in the concert….he twisted my arm….I caved. I was on pins and needles for a week I worried about how she’d do. I cried because I was so overwhelmed with emotion that they thought she could do this.
I never imagined she would be doing this at 7 years old. I talked it out with friends, I asked for thoughts and prayers on Facebook, I stewed about it at work, after my students when home I was discussing it with my coworkers (all early childhood educators).
The big night came! I gave her some extra supplements and some rescue remedy. I invited friends and family to attend. We dressed up and headed to the Kenai Central High School. Her SPED teacher told me she did great rehearsing there earlier that day! When she saw her teacher she started saying “Goodbye MOM!” She was ready to go. The teacher asked me to sit back out of the stage lights where Cece wouldn’t be able to see me….see all of us. Glenna and I took our seats and saved seats for my sister, her husband and children.
I tried to contain my nerves and my tears. Her teacher sent me a text message from backstage because she was worried that Cecelia was refusing to put her “eyes and ears” on. I told her to just go with it and let her choose.
The concert started. First the third graders came out and performed….then the first graders. I’m holding my breath…now it’s time for the second graders!! Here comes Cecelia….she stands up on the risers like a pro and then…..
They start singing!! (Click here to view one of the many videos I took) (Cecelia is on the top row all the way to the right.)
She did amazing!! I am so insanely proud of her! She has been asking to go back and sing more. She’s just amazingly awesome!! We’ll never stop working on helping her recover from her challenges. We’ve come so far and have a long ways to go. But never give up! Always keep going!! Even when her echolalia kicks in and she’s stuck on a phrase or word and repeats it over and over for 16 hours straight…..we carry on…..we push forward….
So many firsts this year! Life is simply amazing!