Transitioning from SPD to Autism
First, I would like to say thank you to all of you who have shared, liked, pinned my blogs it is getting the word out and hopefully helping others in their journey with SPD. It has been awhile since I have written a new blog and long overdue. We have been on quite the journey in the past year and although I would love to share it all in one blog/hub I will break it down into a couple of hubs.
We have moved forward in our journey transitioning from one way of thinking to another whole ball of wax. Chloe has transitioned out of at home therapy to clinic therapy, she has started half days in an early intervention preschool with IEP's and new teachers, new therapists and all kinds of new adventures. I am starting off where I left off and over the next several blogs will get everybody caught up on our journey moving forward and hopefully sharing some experiences, tips, laughs, tears, and a glimpse into our special world.
For those of you who know or have read my posts before and now for those that haven't my daughter Chloe is 3 and was diagnosed with Sensory Processing Disorder before her second birthday. She is a classic seeker in simple terms means she craves additional input, sensory wise, more then other children, and she is non-verbal. We had decided awhile back that we wanted to go forward and have her tested for Autism and after 8 long months on the waiting list last November we made the trek to Riley Hospital.
Preparing for the trip was a long process and now I'm glad we had such a long time to prepare. Our testing was all in one day although we live a good 3 hours from Riley we stayed the night before and after to give Chloe plenty of down time. Just to give you an idea the testing was from 8am-5pm we were put in a big play room with couches and a table and lots of cool toys and observed through a two way mirror all day. We met and had various tests performed with 5 different specialist from different fields. As some of you can imagine a very long day for Chloe and me from meeting new people and new smells in the hospital and elevators it was all very overwhelming.
If any of you out there are thinking of going this route and getting the testing done I would suggest it, even though it was a big day it was worth it in the end. We left there with test results in hand a list of services catered to things that we were concerned about and a list of support groups for anything that we needed. I would also give a few tips on preparing your child, we did A LOT of social stories! These helped her even though she might not have fully understood at the time all of the social stories it was putting those images and ideas and noises into her memory. I also made sure to try and take her to the doctor's office a couple times or even just walk into a community hospital, just in the waiting room to get an idea of the smells and sounds and lighting. Even though some hospitals are a little different I think that they all are pretty much the same in that department. We took a little bit longer extended drives not much but we did a couple of shorter trips and made goody bags for her. Things we picked up at a dollar store that was giving to her every hour along the trip with different stuff in it to keep her occupied.
I would love your feedback!
How do you prepare for a long trip with your child?
Prior to our trip and making the decision to go forward with Autism testing, me and my husband had long talks about how the results may effect our lives and if there was a down side to going forward with this testing. Now I realize that some of you might think, would it change anything? and isn't being informed better? Yes, to both those questions but including my husband in this journey has been key to our marriage and our family. Having a diagnosis could in fact change, not just how we were viewing our daughter, but what some of our expectations of how we were handling our daughters needs. Not to mention, would it include more therapy, would we need to home school, would I be able to work and keep up with the demands and schedules. We had already added multiple therapies and early intervention. What more would we need to do or be doing and would our expectations of our future and our daughters future change? Thousands of things run through your head and my advice is to talk about it, don't feel like you are alone. Many of the concerns I had were the same as what my husband had and if we hadn't discussed these things we might have assumed the other was not interested in the decision or that we were completely alone in our feelings. It doesn't have to be your husband, it can be your significant other, family, friends. Honestly, anybody that is close in your life can be a great sounding board.
Being prepared and talking about the decision still cannot prepare you for somebody to look you in the eye and tell you, your son/daughter has Autism. I felt I was prepared, and for the 30 seconds after those words left the psychologist mouth I had to hold back and not start sobbing, but I managed to keep it together and in those 30 seconds I realized something, with all the prep and all the sleepless nights and researching over the last almost 2 years I felt like I finally understood and was meeting my daughter for the first time, but we will get to that in my next blog.