Grieving his voice

So I read on one of the apraxia blogs I follow (fighting for my voice) a post about how its okay to grieve your child’s speech (or yours) and that really stuck with me. That’s exactly how to explain how I feel about everything sometimes.

Yes, Im grateful that he was diagnosed before school, and since his bday is at the beginning of the year its as though we have an “extra” year before he starts in 2021 at about 5 1/2 years.

Yes, it’s good to have a name, a reason, for his trouble with speaking. Yes, Im thankful it has nothing to do with his comprehension & understanding. And 100% yes it does make the milestones so much more precious and rewarding.

And then I feel guilty for crying, because Im not grateful or thankful enough. I worry about bullying instead of thinking positively … or maybe Im overreacting & just being dramatic. He’s smart, he’ll be fine.

Or, maybe I really do have every right to worry about how he’ll be treated. Maybe that worry will push me to do whatever I can to help him develop a strong sense of self worth & confidence.

Maybe it’s okay to feel a little jealous when watching videos of my friends kids.. To watch the kids his age telling stories & singing nonsense. Or watch the kids younger than him, sometimes as young as 2, singing, trying new words, asking “why why why why” – maybe its ok to let myself cry now and then, because it’s NOT fair.

I have to remember that its ok to feel like this. These are legitimate, honest feelings and lying to myself about how all this affects me wont do anyone any good in the long run. BUT that doesnt mean I should hang on to them.

Never stop looking forward. Never stop learning, growing. Never stop being a solid support for my son. Never forget that as bad as I may feel sometimes, this is his life.

Never let this become about me.

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.

Normal Like You

Its funny how weird & out of place “normal” can feel. It’s not ways a bad thing – quite often it’s great tk really appreciate something that’s usually pretty common.

My son’s dad isnt exactly stable rigjt now, so he’s seen Xaviar 2 or 3 times tops in the past couple years. He’s seen his Nanny and one of his cousins that she’s raising (my former almost MIL, henceforth refetred to as “Mj” lol) Xaviar’s cousin “Pt” has always been so good with him (he’s about 7 or 8 years older)

Anyway, I had messaged Mj to let her know about Xaviar’s diagnosis, she msg’d back saying she had a couple other grandkids visiting amd invited us out to this game center last weekend (arcade, mini golf, few other activities) I got a pic with X eating pizza with his 3 cousins, and my heart just melted at how confortable he looked. Like he SHOULD. A little boy with his cousins ❤

Like I said, its simple, normal, and usually common but with our circumstances its not an opportunity we have much. So when it happens its beautiful 💕 Plus too, the other boys were great with him not talking, or even if they didnt understand they were so casual about it and didnt make him feel awkward at all. (One was 6, he did his own thing lol but the other boy was about 9, and like Pt he was so good with Xaviar – tons of hugs even though they just met!)

It makes me feel better about the future. I worry about kids teasing or bullying, depending on how his speech progresses. But he’s smart & adaptable…as he gets used to being around other kids more, I think he’ll develope his own style or way of communicating with playmates that will work for him. And that is what would make a world of a difference – just having a few or couple good friends, and screw what everyone else thinks lol

Or, it might not be a doomsday scenario like I tend to imagine and Im overthinking things. Again. Not sure if that was a bit of BPD or anxiety shining through the cracks there lol

Long story short, it’s still such a strange and cozy feeling to look at an ordinary, every day scenario and feel like your heart is melting. I hope I never lose that appreciation ❤

Gaslighting

I was reminiscing earlier… My son’s dad used to be my best friend. It was a relationship I never thought could happen, and when it did I fell head over heels. He was my Ever After. We promised eachother that drugs wouldnt ruin our relationship. We werent like the others – yes, after a couple years we could admit we were addicts but our love was stronger than our addiction.

Even when things were falling apart – our fighting, the accusations…his hallucinations and psychosis, all the lies… All that and I still believed we could make it. Because as long as some small part of me could still believe that a small part of him might still love me, I would fight for us. He told me once he never wanted to date a junkie. And I never picked up a needle. Didnt seem to stop him, though.

Then there were all those times when Id be crying in the bathroom as quietly as possible so I wouldnt wake him up, because I didnt want to make him angry by making him feel guilty. Those times when Id call hospitals after he’d disappear for a few days and he’d accuse me of invading his space. Or when he tried to burn down the house because the voices wouldnt stop screaming. Maybe if I could just love him enough, I could make the voices stop. After all, at first he never heard them around me. I was his safe place where the hallucinations couldnt get to him. Until something about me changed. I must have done someyhing to make him not feel safe with me anymore.

I didnt really start to understand the term “gaslighting” until a year or so after we broke up. Thats about when I started to realize that no one should ever have to apologize (Im talking a hysterical, sobbing, begging him not to leave kind of apologizing) for getting upset when their bf admits to sleeping with & having feelings for a mutual friend that was crashing on your couch. How dare I not consider how hard it was on him – and god forbid I get angry at seeing this person day after day after day, hearing the lies they were telling you about me that you were believing while I cry alone in our room just praying that Ill figure out why Im not good enough and maybe Ill be able to fix myself and you’ll love me again. I miss being the type of person you wanted to fall asleep next to.

Then there was the day after our son was born. I was stuck at the hospital for 3 hours after getting discharged, trying to track him down because he left me there sometime in the night, and I didnt want to leave without getting his name on the birth certificate. But I was the one in the wrong, calling a bunch of friends & family like a creep, making them think he was a jerk for leaving me at the hospital. Why couldnt I be more understanding of the fact that he was feeling anxious and needed space?

Somehow I dont think Im quite “over it” yet.

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

Too much to process

So there’s a lot going on. The whole point of this is to have a place for me to sort through my head but I hardly even know where to start.

My mom’s sick. I dont even like using the c word – its as though if I talk about it too much it will make it real. Ive got all these big medical words from her last round of tests, what the doctors put on her report that she wont talk about. Im not ready to look them up yet. I need her to be here for at least a few more years. Minimum. I need her here whem Xaviar goes to his first day of kindergarten. I need her here for when his speech progresses and he can tell her a story. I just need her here to be my mom because Ive wasted so much damn time being an idiot over the years.

I should have pushed myself harder. Sooner. I should’ve not let myself be so afraid of messing up & worked on getting custody back sooner. I really think it did help keep my mom younger at first, when they took legal guardianship so I could finish rehab & get my legal problems dealt with. I think I waited too long though – by the time I realized how tired she was getting, I was only just starting to work towards getting myself stable enough to bring my son home.

Just 1 more month and I should be ready. At least to start transitioning him a couple days at a time.

Tomorrow is his first speech therapy since he was diagnosed with Speech Apraxia. Im actually kind of excited to see what direction things will go now. I printed out & started learning new signs in anticipation, and have been working on exaggerating my pronunciation a bit more with Xaviar.

Im gonna work on getting in the habit of wring more regularly as well. I think it’ll help.

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.