Say What? Nothing.

Hey everyone! As most of you know I’ve been VERY preoccupied with my 5+ month Jaw/Osteomyelitis  health nightmare, which is a whole other blog post. If there is one thing I can count on in my world is that life doesn’t slow down for us, even when we wish it would. We are now focusing on someone else’s struggles, Jackson. Here is his little life update.

Credit: Shannon Lee Photography

A few months ago, I noticed Jackson wasn’t adding words to his vocabulary. Jared and I kept getting comments about why Jack wasn’t talking much so it raised more concern. I got on the google doctor train (this can back fire so do it at your own risk), he should be around 200-1000 words, putting 3-4 words together at least. He isn’t though.. Even the clarity of his words are not where the standard of an almost 3 year old should be. Jared and I voiced our concerns to his pediatrician, she scheduled an evaluation just to see if maybe we were reading too much into it. Every child is different, there is no exact science to know how each human will develop. We have had many family members give their examples as to why he could be behind, he could easily be a late bloomer, hearing problems, tongue tie, have a learning disability or a form of autism. I’m 90% sure everything is A-OK! But the doctor kept saying the A-word that I thought I could rule out.. He is so affectionate, he listens to what we say with eye contact, he is social etc so in my mind it is not a possible to come out of this journey with an autistic diagnosis, but who knows. Our pediatrician observed him a week or so later, and she agreed, something is off, way off. She asked us from his 2nd birthday to now has there been improvement, sitting in silence we both said, “no.” It kind of broke my heart. Let the adventure begin…

She wrote a recommendation script to have his ears checked, but until then we need to check out the state program 0-2 years of age along with the district program 3+ years old. So I start hounding the state program, and nothing… was told someone would call me back (13 calls prior) I received no call, continued to call 10 more times and still never got through. By the time I would be able to even get hold of someone there, Jack will have aged out of the program. Cool. SO… we set up an evaluation at our school district. They start evaluations as early as 2y9m, Jack was 2y10m, yay us..

January 27th: we go in bright and early, the one day my kids wanted to sleep in. Walked through the preschool doors attached to Sossaman Middle School. Joining us in the eval room was 2 other kids and their moms, and the 3 teachers/psychologist/specialist that would test each kid in 5 different categories of learning. Every question they asked me made me shrink further into my chair. “How many numbers does Jackson count to before he stumbles?”  “Does he know any of these shapes/colors/names of animals?” “How many words do you think he says?” UGH. I explain, he literally isn’t talking more than 20 words, he knows about 30-40 but everyday talk is usually the same 10-20 words, with maybe 3 or 4 different two word combos.. Even the clarity of those words is questionable. I just felt the judgement hard core in that room. By the time Jack made it through round 3 of 5 the very rude specialist told us to leave. WHAT? Yes, leave! I asked why? She said he had ear wax, I sort of chuckled, “OK I can just wipe it out?” She said “No, he was already going to fail the hearing test based off the other testing questions they already asked” … Baffled…. She said we will reevaluate once he is 3. I looked at the other teachers and said if they know he is this behind don’t you think we should start his learning program sooner instead of dragging it out 8 weeks???

So mortified, I ate gluten…I KNOW! I can’t believe someone who works with autistic kids had absolutely no patience with him, not that he was even being a toddler at the time, he sat in the chair he tried to engage in their testing, of course one moment he saw a wall with paint activities so he tried to get up and play, but seriously that was it he sat back down. My kid has been a demon at times in the past but holy cow wrong profession lady…

After I regrettably ate a McDonalds breakfast burrito I vented to Jared and he couldn’t believe what just went down. Got in touch with the evaluation coordinator and got him scheduled at the first available appointment once he turns three. So, April 6th is on the calendar, I have to say the thought of going back into that room and dealing with the same specialist has the anxiety spiked. But we have to get him the help he needs.

The pediatrician called and finally scheduled a hearing test at Banner Audiology. The luxury of that testing center is the main exam is in a room with speakers and not headphones. Jack and I go in, he is confused but curious. The doctor that did Jackson’s testing was very kind, honestly, I needed that after the last specialist. He did the hearing exam in the room, everything looked good. Then the ugly part of testing arrived, they had to stick things in his ears while he remained quiet, want to guess how that went down? It was a lot of loud crying, clinging to Mama and holding him down. It’s not the most pleasant experience holding down your kid for doctors, but we do it because we need those answers to help the tiny humans.

She checked for fluid in his ears to determine if we needed to put in tubes, and she said it looks good so we shouldn’t have to worry about that (Yay!) BUT she will need to suggest the testing under general anesthesia. UGH, I’ve already dealt with 5 sedation’s myself in the last 4 months, and now my little guy has to jump on this health nightmare train. I know she was nervous to tell me because some people really do lose their minds hearing it, I however, am always expecting the worst in medical field these days, I knew it was coming. At the end of the day, we need to make sure he is okay. So, we scheduled it. Better safe than sorry and the sooner we can find out if there is anything wrong the sooner we can help him.

Next up is our clearance appointment with the pediatrician (March 6th) She will check a few things and give the thumbs up so he can go under in the following weeks.

Jack will have a 2 day test after the clearance appt, the first day (March 25th) is basically the same testing we did at Banner Audiology and they’ll double check everything, the 2nd day (March 26th) is the procedure, should be about 3 hours, they will put a mask on him and out he goes. The doctor will also fit him for a hearing aid just in case while he is under. Hopefully all will be good, and we can cross out any hearing disabilities. Bonus: we shouldn’t need to do the hearing portion of the test at the district evaluation (April 6th) because we will have already been tested, so one less stressful event.

I am hopeful, but prepared. If I had to guess, I would think perhaps it’s his daddy’s genetics (Jared has dyslexia) I read it’s very common to have a speech delay young with that. Especially with males. I would rather know sooner so we can learn how Jackson learns, to get him on track for school. My biggest fear with these learning disabilities is how he will think of himself. Jared voiced his concern being in that position in the past and that he felt left out or stupid at times. There is nothing wrong with a learning disability, everyone learns differently, and I would hate hate hate if Jack felt stupid because things might be harder for him. Luckily, he has a crazy mother who will do everything to make sure he gets the proper care and tools to succeed but I know it will be a journey. It could be as simple as a late bloomer (hopefully) or a much more intense diagnosis, we will get there when we get there. Also, looking into private speech therapist while we are in this program age gap to help him out.

That’s what has been going on in Jack Jacks life, just part of the everyday chaos of our lives.

I will update as things continue. Good vibes and prayers are always appreciated. Jack turns 3 March 31st! Besides this little bump in the road he is a really smart adventurous little human. I can’t wait for this chapter to be done with and watch him grow.

Credit: Shannon Lee Photography

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