It has been a while since my last post. Things have been a little crazy and I am almost at the point where I can breathe a little bit. I started a new job in mid-September at it involved a very steep learning curve (which is still every day really), and a busy time of year. On top of that my school term is in full force, and we have been keeping on top of Monkey’s transition to school along with appointments to therapy, the speech language pathologist, and occupational therapy. It has been a lot and I am definitely tired, but I need to get through the next few weeks and then the Christmas season will be upon us and we can relax a bit.
Lots of updates on Monkey. She has been using a lot more spontaneous language and her echolalia has been going down quite a bit (all good things). After two months, I think she is finally settled in school and enjoys it – I can hear her singing songs that she learns at school and the communication log we get from her teacher always say she had fun laughing and playing. There is increased social interaction with her peers – in fact one of her Educational Assistants showed us a super cute picture of Monkey and a friend holding hands walking down the hall – so adorable!
In order to help the school, we decided to record Monkey’s ABA table sessions so that they could get an idea of the types of things she is working on and how to hold her attention to tasks. When we got these videos J and I were blown away by our amazing girl and her beautiful brain. She has made so much progress in 8 months that it is unbelievable. She can count from 1-50 (and can generally name random numbers thrown at her), knows her letters, can sort categories of pictures, can finish sentences of common phrases, points out objects to us (like an airplane or a truck), and can actually sit and focus for 15-20 minutes at a time. Her SLP has worked with her to get proper pronunciation of words, and her OT has worked to get her to start pre-writing skills. It really is a village of people. At the beginning of this journey there were times that I felt guilty that I was not able to help her – that I should be doing more and learning and researching new treatments/therapies.
Here’s the thing: you don’t have to do everything – in fact you can’t do everything. I can tell you without a doubt that Monkey has made more progress because of the people we have surrounded her with – way more than we could have done ourselves. Raising a special needs child can be isolating – especially when you have not had exposure to the diagnosis before. I cannot tell you how amazing it is to speak with people that “get it”. Who understand your struggles and see the light in your child and their potential. I am so thankful that we have amazing professionals working with Monkey. While we still try and keep therapies consistent at home and model as best we can – I have learned that some days I just want to be her mom and not her therapist. Sometimes being silly, making funny faces, and having impromptu kitchen dance parties is therapy in itself – for all of us.
We are walking (sometimes running) along this journey and while we don’t know where the path will lead, we do know that each person we meet along the way moves us forward to better connecting with and understanding our Monkey better. In spite of it all – work, school, appointments, new jobs, setbacks, meltdowns, just keep swimming, because 10 steps forward and 4 steps back still means you are ahead of where you started.