The beauty of Why

This weekend was both frustrating but also involved a milestone which made up for everything!

It felt like a lot of his speech regressed a bit today – not only was a lot of it unintelligible, there was a few times where Id ask him something and he wouldnt even try to say anything, not even the garbled babbling (I hate the term “babble” but I cant think of another word to describe it)

It was either silence or a repetitive “mmm mmm mmm mmm mmm” (except when I said “you’re not using your words?” And he said “oh-hey” [okay] )

But, Ive been teaching him the sign for Why because thats a huge thing for me – I hate that he’s never asked a question before. I think I asked him to pick up toys or something, and he starts tapping himself on the forhead going “ai ai ai ai ai” and it took me a second to realize – he was trying to sign and say why!!! I dont even remember what I told him but I gave him the biggest hug ever!

I love that child so much ❤ I never thought it was possible to feel my heart melt so many times over one little human ❤❤

Update on nothing

Once again, I start something with lots of idealistic commitment goals – aaand disappear. I actually used to have an online thing through another site years ago, chronicling the day to day craziness of my methy life and I managed to keep that up till the site went down, so Ill get into a good rhythm here. Like anything else, just takes time & practice.

So, COVID 19. Messed up. My work is considered essential so my routine has basically stayed the same, just with more sanitizer and less impulsive spending. Still see my son on the weekends so that’s the main thing. My mom’s been having a bit of a rough patch health wise though, so thats been hard, and pretty scary sometimes. Not ready to go into details on that though.

Another tough thing is the lack of appointments with my son’s SLP. He’s been making some progress and I dont want him to regress too much (I know some is inevitable) We learned a couple new signs though – “help” and “why”. Id see him struggling with something, and half the time he’d get angry if I asked if he wanted some help, the other half Id keep quiet and he’d get mad because he couldnt do it… Now he’s starting to ask for help using the sign so that puts some of the control back in his hands, so to speak.

The “why” is so important though … I keep telling him there’s so much to learn about things that we dont always think to explain, and that him asking or signing “why” will let us know when he wants to know more. Fingers crossed, Im really gonna work on that one this weekend!

One of the downsides to waiting so long between writing, is that there’s so much to write that it just feels scattered and messy and too much… So Im gonna leave it at this, and try to get myself more mentally focused.

Confirmed

So a part of me thought maybe I understood it wrong, or maybe my son’s SLP would have a different opinion than the developmental specialist. Maybe it was something as simple as a bit of a speech delay and at some point he’d suddenly “get it”

I didnt realize that our SLP had already reached the same diagnosis. And the report from the specialists came in the mail today as well.

“..a bright and social little boy who we agree has a significant speech apraxia… also demonstrates a language delay, which seems to include some receptive language difficulties…”

Im not scared of the hard work on my end. Im not scared he may not be “capable” – he is smart & stubborn, and quite often his frustration is what pushes him to accomplish things. Like the one day he was angry that I wanted him to wear rainboots to play outside & splash in puddles after the rain. Out of sheer frustration at not getting his way, he sucessfully put his regular shoes on for the first time. Correct feet & all. 😁

What really scares me is he has such a big heart ❤ He is so sweet and nurturing; his stuffed puppy is covered in bandaids from all the times it’s fallen off the bed.. Another time he was almost in tears because he was so worried about his babies in the dryer (several stuffed animals – I try to be careful but he caught me!) And after he gets upset, its only completely better once you literally dry his tears and it all makes my heart melt. And Im terrified because I know kids can be cruel – sometimes without realizing it, sometimes just being a straight bully, and either way can be damaging. I was so shy as a kid and because of bullying I grew up so uncertain of myself & hated myself for years and I would do anything to protect him from that 😭😭😭

I just hope & pray that he never loses that innocence, hope, amd trust 💕💕

After I let him take his bunny out of the dryer, he still waited & kept the rest of his babies company – sometimes even getting bunny to wave at them too

First step, first post

I dont know if this blog is just for me, something temporary, or what. I just know I need to sort out the thoughts in my head.

Im not gonna bother with an organized, clear backstory & info. That’ll come later, maybe. I dont really have a starting point so Im just gonna jump right in.

My 4 year old son was recently diagnosed with Childhood Apraxia of Speech. This weekend I learned it’s also referred to as CAS. Here is what else I learned this weekend: (which may or may not be accurate, but its a starting point)

1-10 children out of 1000 are diagnosed. So between about .1 to 1% of the population. It’s pretty uncommon.

There’s no real known cause. Genetic, environmental, random chance, drug use while pregnant, who knows.

It cant be outgrown. Best chance you can give your kid is speech therapy (the earlier the better) hard work & patience

Its a disconnection in the brain that stops your mouth from saying what you think. A word can be said clearly a couple times then suddenly stop. Or mispronounced. Or gibberish. Its not being lazy or a lack of effort, its like a physical block.

There is nothing wrong with his mind or intellegence. He is smart, he understands, and he is trying.

I also learned that he’s not just a “late talker”. He wont overnite start talking in nearly-complete sentances, there’s no “just you wait, you’ll miss the quiet” in our near future. It will take time and a lot of hard work, but over time he can (and will) be able to communicate.

I learned that I wont hear the rambling toddler babble, the random endless questions, the nonsense stories.

I may not ever hear those whimsical, made up songs some kids sing, or be hounded with an endless barrage of “why, why, why…“

That one is the hardest. 4 years old and he has never been able to ask me how something works, or why something happens. Of course Ill explain things as they come up & I think of them but how many times has he been curious about something and I didnt know? My sweet, curious boy has never once been able to ask me a question.

You better believe I will be making a huge deal over every milestone. 2 months ago, just before Christmas & his 4th birthday, he said “I love you” for the first time. I dont care how unclear it may have been, I knew exactly what he was saying.

For now though, it’s late, and now I’m crying, and there’s a thousand more things I need to say, just not right now.