Just wondering or rambling how all this happens in one child.

In light of all that has gone on with DW, I should just take it all in stride by now. Five years, almost six now of one thing or another. His nose defect and the two surgeries to correct it all before he was one month old, the SEVERE MSPI (milk, soy protein intolerance) and failure to thrive diagnosis. The NG feeding tube he had for ten months, the loss of muscle mass and abilities to move his arms, legs, head, etc. Followed shortly after the list of acronyms or diagnosis that follow his name most of the time.

I thought, this has to be enough. That is all that a kid could endure really. It is all he should have to endure! When they told me from birth til a few years ago that certain tones were inconclusive, they were unable to determine if he could hear them correctly, I knew that there might be a chance he would get the familial hearing loss that runs in his father's family. In fact I remember being almost certain he had it. It's just that around a year ago or a bit loner really, when they gave him the TS diagnosis, I REALLY didn't think that there would be another thing to add to his already growing list of issues. I didn't think that this would happen. Even after his geneticist told me all these years that bilateral choanal atresia never comes alone and is indicative of other issues, I still just thought that his plate was full. That it wouldn't happen.

So, when they told me earlier this week that he had his father's and grandfather's sensorineural hearing loss, I felt terrible. I knew halfway through the test though. When I could hear the tones and he would either hesitate greatly before responding or he'd just simply not react, my gut just sank. Still a serious part of me fully expected to walk out of there and them tell me he was fine. I mean he's just a boy and with all that he already had on his plate...

I've done the mom thing, where you do the denial, you get angry, the crying your eyes out thing and then the research and acceptance thing. All within less than a week this time! :) I'm getting better! Truthfully I'm still somewhere in between the crying my eyes out and the acceptance stage. It still KILLS me that he has to do all this, my little tiny man, and though I can advocate for him, learn all that I need to help him and things that he may need to know, be there when he needs me, but I cannot fully understand how it must feel to be in his body and I cannot take it from him. Though I'd give anything to do so.

So, for now I'm settling for organizing playdates with other hard of hearing children and their families. So that he can see their aids and how they are and he'll maybe get used to the idea of having two aids and he'll see that it doesn't bother those other boys and girls. He'll see that they are normal and do things just as he already does. This is what I did when he was diagnosed with TS, sought out a support group to ensure that he'd see others like himself and know that he was really ok. It is all I can do right now and while everyone is marveling at how much I'm trying to do for him (which irritates me slightly), its not the accolades that I want, it is simply that my son be ok and well adjusted. I know that his self esteem right now is something that I can do something about as he ages, I know it will soon be out of my control but for now, I will do whatever I can do to make sure he can at least start out in a good place.

Hello

So, I guess I should start my first blog by introducing myself. : )

Um, I'm a SAHM of two boys and stepmother to another boy, who resides in the most part with his mother.

My youngest son, now almost 2yrs old, has just recently been given the diagnosis of CAS: Childhood Apraxia of Speech.

My oldest, will be 6 at the end of November, has sensorineural hearing loss (genetic in nature), TS (Tourette Syndrome), ADHD, OCD, SPD (Sensory Processing Disorder), anxiety disorder, etc.

The oldest, DW, is in OT and PT 3 - 4 times a week. JD, the youngest has just finished his first week in ST. He goes 3 times a week. He will need PT and will be getting qualified for it sometime next month. DW sees a psychologist once a week to help with the TS/ADHD rages and OCD issues. He also has a neurologist and developmental behavioral pediatrician that he sees monthly or bi-monthly. He has a geneticist, an ENT (specialist in cranial facial surgeries and issues), a GI doctor and his regular pediatrician. Then you throw in JD's hearing tests every 3 - 6 months and life in our house if usually revolving around therapy or doctor's appointments!!

DW was first diagnosed with SPD at just under 3 years old. OCD was the diagnosis given to him at age 3 as was ADHD. By not quite 4 the tics we'd spent the last two years, chalking up to sensory issues, allergies, etc were undeniably not coming from those issues. The sniffing, blinking, odd breathing noises, constant tugging on his clothes, arm/shoulder jerk, swiping at his nose, etc were no longer mild or in anyway dismissable.

That was our life. Full of meltdowns, medications, various therapies. Then came the dreaded audiology exam. DW's father and grandfather has familial sensorineural hearing loss. So, when as a baby, there was a VERY mild problem in certain tones, it was no surprise. This year's exam though...showed that bilaterally his hearing loss was mild and in some areas, came close to being moderate. It was my choice to do hearing aids or not....when they let me hear how he hears, it was all I needed. He's being fitted for molds next week.

JD has just started his ST therapy a week ago. So, the CAS diagnosis is also new and added to the hearing loss that DW has, it's worrisome. JD's hearing exam was inconclusive in the lower tones, which gives me no comfort.

So, now we add yet another chapter to our lives. Another layer to this crazy cake. It is devastating, it is hard, it is crazy, it is full of tears but, it's priceless, the moments where the light shines in is blinding! It is full of laughter and silliness as you learn to never take a thing to seriously.

I'm just hoping I can hold on tight enough and NOT mess up! :)