I'm new and this is my very first post. Firstly big hugs to you. You are your child's best advocate and you must question everything you hear from all professionals, not to say they will not be helpful, but a professional opinion is just that...an opinion and you mommy instinct trumps any professional opion. I started this journey 10 months ago. The first thing we were told to do was contact EI and have hearing evaluated. My sons hearing is absolutely fine, although the ENT suggested tubes to see if it would help. It made no sense at all to me and I'm so glad we didn't. As I learn more about ASD, there are some biomedical components to consider and the anesthesia would likely not have been good for him. Not sure, but until I am confident, my child will not have any exposures to heavy pharmaceuticals,etc. Including vaccines. Again, I'm just not sure yet, so until I am sure these are no threats, I won't expose him. Hearing evaluation is a good idea, but do you suspect hearing loss? Or does it seem more selective? It sounds like he's had a regression in speech, so again I'd question hearing loss unless there was a significant event that happened that could have caused such loss.
My child is very young. He's just turned 2 and I still feel afraid. I feel horrified, quite honestly, and saddened. I have to remember what so many moms here have said and that is to stop, play and watch his beautiful face. We took a day off from therapies last week and took him to the zoo. It was his first trip there and he really seemed to love it. It's made me question all the hours of therapy he is already attending and made me think we ought to work in a zoo trip weekly. I need to take this time to enoy his toddler years. I have an older child too, so I know how quickly this time will pass.
Back to the ASD thing though. I had so many people telling me to relax....how could I? When something goes on with one of my children, relaxing is just not possible for me, so give yourself permission to grieve, to worry, to be afraid. Don't feel guilty about that. Try to find room for breathing too, and laughter, and relaxing, if you can. Do what works for you. If you exercise, stay on that course. That's one thing I do wish amongst all of this, I wish I had taken better care of myself as I've grown fairly fatigued and these months of stress have taken a toll, but I could not have made a conscious decision to stop looking for answers, to stop research, to stop worrying. I've given myself a year basically to find our new path. By the way, my child has no dx.
Ill end by saying the first month we lost eye contact and his socialization or lack of became extreme, we changed his diet. We cut out gluten and dairy and within a month a lot changed. He was responding to us again. He handed a stranger a toy. We still have a lot of work and therapy ahead of us, but that was the best place to start. There is something to the diet thing and I personally believe everyone going through this should start with some diet changes. Some kids respond drastically to diet. I'd add a good probiotic too. While it's true and I've heard some zoning could be seizure related, I hear more often that it's tied with gut flora and yeast overgrowth. A nutritional panel can help determine if there are any flora issues and I'd much rather put my child through a urine test or blood draw than an EEG or MRI. We did the MRI although I knew in my mommy gut that we hadn't had anything traumatic happen. I knew we had regression. I'm not so sure his body was able to process the anesthesia like a healthy body. I wish I had not listened to that professional. I wish I had listened to my mommy gut, at least until we tried other non-med things first.
One other thing to add, if you are using Tylenol products, research those a lot. Tylenol is rough on the immune system and is currently being linked to asthma. Not to mention all the recalls, so I'd avoid ibuprofen in general. Not picking on the brand actually...just the product.
Hugs to you and all other mammas in our shoes. Our children are beautiful. Our children are special. And our children can be helped.