Freedom.....Freedom........Freedom.......Freedom Are you hearing that song from the annoying commercial playing singing the words freedom???? I know I sure do. That is totally and completely what I am feeling FREEDOM......FREEDOM that I have not allowed myself to feel or have since Hayden was diagnosed with severe autism three years ago.
I feel free to walk my own path and define our lives. It feels so liberating to empower myself to live life the way I want and make time for the activities I want to do with my family.
We have been running a totally, completely, life changing, amazing therapy program out of our home for our son Hayden for the past 22 months. I seriously love this program and highly recommend it to anyone that has a special needs child.
The least amount of hours Hayden has spent in therapy a week is 20 and the peak amount of hours has been 65 hours a week. I have done anywhere from 10-25 hours a week of the one-to-one therapy with Hayden myself. I also apply all the principles of the therapy to our lives when Hayden is not in his therapy room as well. I also am the team leader of his program. What does being the team leader look like.......I coordinate the therapy schedule, for each person that works with Hayden I observe at least 15 minutes of the session, provide 15-20 minutes of feedback after each session, I provide support to our team members, coordinate and run the 2 hour monthly team meeting, complete monthly evaluations based on my observations and session evaluation forms that team members fill out, organize the session evaluation forms, define monthly goals, make activities to do in the playroom, clean the playroom, and rotate games in and out of the playroom shelf. It's a full time job that I seriously love. I love being the leader of Hayden's team. I love working with Hayden. I truly, deeply, LOVE....LOVE.....LOVE being in the playroom with him. It is the one point in my day that nothing else matters. It's just me and my little man having a blast. If you want to see me playing with my little man check out this YouTube video:Brandi and Hayden playing in Son-Rise
The thing is I am tired and overwhelmed the majority of days. I also work 12.5 hour shifts on Saturday and Sunday, prepare all of our food from scratch (no processed foods at all). I coordinate Hayden's supplement schedule and administer his supplements which is often something every 1/2 hour to an hour of dosing. I care for our home, spend time with my princess, research autism, and provide support to other autism families.
It is often 6pm and I am feeling light headed and have to really think about if I ate or not that day. Often times the answer is no. All I have had for the day nutrient wise is a glass of fresh juice in the morning and a cup of coffee. Seriously....I am too busy to eat. I am too busy to sit down and just breath. WHAT THE HELL!!!!!
I often find myself getting frustrated at my husband because he is not helping me enough. Brandon helps, he does his best, and as he often says "I do more than most". He does, he truly does......it's just not enough. Wow, I am in tears as I type and think about this. In all honesty I don't think if we hired someone 40 hours a week to be my personal assistant would be enough help. Brandon could not possibly help me enough...........I have set ourselves up to fail.
Our schedule, to do list is running our lives!!! I am changing that......I am changing that......I am changing that!!!!!! I AM REGAINING OUR FREEDOM :)
What does this new found FREEDOM look like???? Well, it still in the works and won't officially begin for 4 more weeks (that is when our last student finishes her externship in Hayden's program).
1) We are taking Hayden's therapy program down to 20 hours a week this summer. I can't even tell you how freaking good this feels to say. That's right we are going to rock the therapy room 20 hours a week this summer. I am going to use this freedom for days at the pool, playing in Grammie's garden, weekly trips to the zoo, trips to the splash pads, walks, bicycle rides, trips to the playgrounds. I am going to spend time with my friends, my nieces and nephews, and hopefully make new friends. I have lost several over the past couple years. The kids are going to have playmates. We are going to run around and be FREE and celebrate FEEDOM.
2) I am going to leave the house once a week with out the kids for purposes other than going to work or doctor appointments.
3) I am not going to worry about finding a school for Hayden or what we are going to do about school. When Hayden is ready I will know. When I know I will find an amazing place for him to continue to learn and develop.
4) I am totally tweaking our therapy program with the help and guidance of the fabulous Julie Sando. Hayden's therapy program will now fit our family vs. us fitting the therapy program.
5) I am going to live and have the FREEDOM to adjust, tweak, and change whatever I want to change.
So here is to life, here is to living life, here is to loving life, and here is to the FREEDOM of living the life YOU want :)
XOXO,
Brandi
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