Chronic Medical Struggles in Nonverbal Children (Video)
Hey all, here is the update on Cooper’s ear infections, Cat Scan, and most recent request for ‘help’ and a ‘doctor.’ So many of my wonderful followers have been asking for an update and it makes me so happy to know that people care about Cooper.
I used to think if I could just get him communicating I’d be able to help him. I was wrong. Now that he communicates we still can’t help him. I’m chasing doctors, demanding tests, advocating, researching, going slightly crazy, all while my kid melts down and screams, begs for help, and his autism makes figuring out what’s wrong nearly impossible.
This mama is making a plan to move forward. I wish figuring out why he is in pain was a simple answer. It’s not going to be though. And the key to know is we aren’t giving up.
We are going to keep calling, making appointments and demanding better health care. These kids deserve it.
Take a listen as I give an update on Cooper’s chronic medical issues…and how nonverbal autism makes it all the harder to get help.
https://youtu.be/GZQi71wCZGY
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
I found your blog through a video of yours that’s been going around Facebook. I applaud you for your courage to tell it like it is. I was shocked to hear that you’ve been getting a lot of very mean spirited criticism for what you said…..I for one could definitely relate and I remember well my own moment of realization. That is a long story, but for now I just want to give you one idea of something you could get checked out when your boy is in pain and you don’t know what is wrong. My son has had chronic issues with constipation as well as GERD. More than once we have been in the ER because he was in awful pain and having tantrums because of it, and more than once it turned out he was very backed up in his bowels. Check this out if you have not already. Also he had a swollen esophagus at one point and would literally cry while he was eating. GI issues are very common in the autistic population. God bless you and your sweet Cooper, and your whole family.
Sorry, just wanted to add one other possibility…..after months and months of illness, we found out my boy had not just Lyme disease but also other tick-borne illnesses. And this was after a standard dr. office lyme test came back negative. It is very common to get false negatives. We used a test from Igen-X lab in CA and it found he had more than one strain of Lyme. Also, we found he has many food allergies and sensitivities. Adjusting his diet has helped a lot. All of this took us quite awhile to find out, so I just wanted to share it. I hope you find whatever help you need! I know how hard and upsetting it is when your boy cannot tell you what is wrong and you Know he is sick!! I have been dealing with all of these things since 2007, my boy is a teenager now. It’s a long road.