So I live Autism 24/7. I am a mother of a child who has Autism and I run an organization that helps families with individuals and families with Autism (we help other non profits-TACA,GR, ATCA and others existing programs and we also help families direct with our Pantry Program).
This last week and half has been one of the hardest weeks I have had in a long time. My son became ill and his Clostridia flared up. We didn’t know what we were first looking at and when we finally did it was a full blown flare up (I now know the red flags and warnings we had seen the weeks prior emerge). I watched my son who had been thriving weeks prior regress badly. I watched his speech become less and less (yet a handful of weeks ago he read a page from his book outloud for the first time) his body became so lethargic he didn’t even want to dress, eye contact diminished, he started to hit his head (with his hand which I had never seen), aggressive at times, stomach pain, and the list goes on… I cried everyday. Yet, I still had to work full days w the Autism Hope Alliance taking meetings from new partners and potential partners convincing them that Hope is possible for our kiddos (all while not crying on the phone knowing how so important their help is to our kiddos). I realized I don’t just turn off my computer and go home and Autism doesn’t exist anymore. I turn off my computer after my day of work and walk right into a door of what I fight for daily. There is nothing fancy about Autism I can assure you.
I am in the trenches fighting along right with every parent I fight for. I prayed a lot this week as I knew that I needed to keep my faith and stay on course. My son started on Tues talking a bit more and yesterday even more and was interested in painting again. He wanted to hang out w me and read and watch a new movie we hadn’t seen (Agent Cody Banks) last night and as I heard him laugh at the funny parts tears ran down my face. He saw the tears I couldn’t hold back and he wiped them and said, “Mommy crying” and I said, “Mommy just missed you and I love you so much!” He replied, “I love you too Mommy” then kissed my cheek so innocently not even understanding the significance of that interaction and just kept watching the movie snuggled next to me. I pray today he continues to thrive and his body continues to heal. Regression is never easy however, I never give up and I keep reading and researching. I do all I can in my power. The minute I learned he had a Clostridia flare up and yeast I decided that minute to put him on a Paleo diet. The medicines could do their job but I could do mine too. Got his bloodwork done, stool samples and urine samples in and knew I was doing all I could. Hearing Jax laugh and seeing his smile are things I will never take for granted. I know we will get thru this and I know the fight for our kiddos is so important. I am so thankful for doctors like Dr Rossignol (Jax’s doc) and others like him that recognize what is happening to our children. To me Biomedical and Diet are crucial. We can’t stop fighting even when it gets so hard you can’t breathe. We are in this together. Looking forward to the beautiful rainbow at the end of this storm.
#nevergiveup #walkthewalk #autism #hope