I remember sitting in the Drs office. T was 2.5 yrs old at the time. She was sitting in her stroller rocking back and forth, not minding anyone in the room. I remember her Dr saying “I’m sorry, your daughter has Autism”. We knew after doing some research and seeing the red flags. T did not play with friends or speak like the other 2.5 yr olds we knew, but hearing those words made it all real. She was diagnosed in the moderate to severe category. I had no real idea what this all meant or what would be next.
I used to walk up to her room every morning with tears building up in my eyes and saying to myself “ok today is the day…..she’s going to say hi mom! or look at me when I walk into the room”. It didn’t happen. She never called for me. She didn’t talk to us, didn’t play with her brother, make eye contact and really didn’t acknowledge anyone. She would cry and scream but we never really knew why. I wish I knew what was wrong. What was she thinking? What did she want to tell me? She would just sit in her Elmo chair and rock almost all day in her own little world. I never thought I would have a real back and forth conversation with my child. Never thought she would be able to tell me what she needed. Never thought those big beautiful blue eyes would look at me and tell me she loved me.
We started T in a preschool program for socialization that focused on speech but did not see much change. When it was time for school, I took her in for JK orientation. I knew she could not go to school. She was just not ready. She still had a diaper and could not talk like her peers. She sat in a little tent with 2 books in her hand and rocked back and forth in a chair. Another little girl tried to speak to her and she did not even flinch. That little girl then asked me “why is she doing that?” I knew she could not go to school. Here father agreed and we decided to look into IBI instead.
We initially started at 6hrs a week, but started to see small changes. The staff was dedicated and made a program tailored to her needs to help with her challenges. Shortly after, we bumped her up to 20hrs a week and that’s when the magic happened. Every little step was celebrated. I never thought I would have a conversation with my daughter. When I’d pick her up, I’d have a conversation with myself. “What did you do today?” “Who was your teacher?” Until one day I got an answer! It was one word, but it gave me hope and I knew this was working! It started with one word, then two, then sentences.
We continued with IBI for about 3yrs and eventually went to 40hrs a week thanks to the funding we were now receiving. IBI changed her life. She is now 9yrs old. Does not stop talking and can tell me what she needs. She has friends and is integrated into a regular classroom with support. IBI helped T get out of a diaper, her rocking decreased dramatically, she learned how to initiate greetings, try new foods, follow routines, learn self-help skills, play skills. She even learned how to read and do some writing before our IBI came to an end. Her Dr once called her a miracle. IBI was the miracle. If we did not have IBI, I do not know where she would be today.
I now have pleasure of working with kids on the spectrum and get to see the impact of IBI each day. I get to see how amazing each child is and how much potential each child has with the right programming for their therapy. I get to see the glimmer of hope I once had in each parents eyes when they pick up their child and I get to tell them a new skill or something amazing their child did today.
Taking away sufficient funding from families is taking away the hope from them. Taking away the chance each child deserves to reach their full potential. The recommended hours of therapy is 25-40hrs a week and therapy should be intensive for at least 3 yrs. The new funding will only give families enough for a few solid months a year of intensive therapy. This is not enough. Schools will be filled with children who are not ready, who don’t have the same skills as their peers. Skills essential for them to succeed. We need to look at the needs of these children and give them a chance at a meaningful future. #Autismdoesnotendatford