Ya’ll writing a blog is a lot like calling a friend on the phone; if I do it regularly it feels easy and lovely and connecting. If I haven’t done it in forever, then it feels impossible – where do you start talking? So let’s just pretend we haven’t been apart all this time and flow right past the awkward pause of the last half year, m’kay?
Like everyone, and especially everyone with kids (except those awful humans who have really enjoyed all this time that has allowed their family to really bask in the joy of togetherness and had the truly bad taste to tell the rest of us about their joyful experiences) the last six months have been FULL ON HELL.
We moved into a new house in March, but we only moved 1/2 our possessions so we could stage the old house to sell – we literally sat on an outdoor couch as our only seating in the entire house for 2 full months… And, we moved in, and a week later went on full on pandemic lock-down, schools closed, working remote, in a new house – trauma kids all freaked out and ours FREAKED THE FUCK OUT. It was a huge and awful regression, that we now experienced 24 hours a day 7 days a week – there was no help coming, no breaks, no support.
Side note: we had HUGE fears and doubts about moving before we did, for all kinds of reasons. I HAVE NEVER BEEN HAPPIER ABOUT ANY DECISION IN MY ENTIRE LIFE. A big outdoors, a pool, a bigger house. I’m honestly not sure we would have survived these last 6 months in our old home.
People with special needs children truly suffered in this essential lock-down and distancing; children were not receiving OT, PT, PCA care, in-person therapy. They are missing both the need that the essential service is filling, AND they are missing the stability and routine and regularity that creates a feeling of safety. Kids LOVE doing the same thing over and over and over – cry and mom comes, the movie ends the same way, the story has the same adventure with the same ending . Each of these things tells kids that their world can be understood and predicted and they will be safe in it. For trauma kids in particular, or kids with anxiety, a disruption is not a little deal, it’s a world-collapsing terrror-inducing hellscape where ANYTHING CAN HAPPEN (but not in a good way). For parents who are already living on the ragged edge, in families that revolve almost entirely around the special needs child’s requirements, removal of these essential services was like watching your life line float away while you drown.
And, for a trauma kid like mine, who has been hurt by caregivers, being locked in a home with only caregivers at a time of crisis she isn’t able to BELIEVE even though she KNOWS that we will never hurt her, and we will have a house, and we will always have enough food. Suffice it to say, major, major, regressions were experienced. At one point I sent my coworkers a video of me sitting in my home office, with screams just reverberating around me, to explain my absolute lack of productivity for months.
We made it – right? We all did. X3’s therapist is amazing, and started meeting with her virtually twice a week, and also with us every few weeks trying to help us all cope and remind X3 that she has the same world, with people who care about her, outside this house. But there is only so much you can DO – we are ALL better parents with some breaks. And honestly, there’s a reason kids generally learn better from people who are not their parents – especially our kiddo who goes into immediate panic brain if we try to teach her ANYTHING. As we tried to normalize this new life, new house, no school, no going places, we kept hitting the same walls over and over, in ways that were really a struggle for us as parents.
X3 is growing and learning and catching up so much lost ground. And she’s physically so talented, she learned to swim incredibly fast out of pure determination, and she is THE FASTEST EVER, how I wish there was a track team for 7 yr olds! But directions, true learning, sounds, vocabulary, understanding, all seem just…impossible. She is learning to sound out words, and it is like magic to hear, but there is no comprehension of when she has it right, or what it means once she says it.
It’s amazing and tragic to have a reasonably direct comparison:X2, at 3 has a larger vocabulary than X3 did at 5 and 6. At 3, X2 comprehends more from casual conversation or questions/directions than X3 does at 7. X3 can listen to to a 30 minute podcast and cannot tell you even ONE thing that happened in it. If I try to read something without pictures to X3 she has a complete screaming meltdown. At age 3, X2 wears the same size X3 wore at age 5. Very recently, X2 has started to answer questions faster than X3, like “x is for X-ray” or “what rhymes with fox”? Trauma, neglect, and abuse, for the first five years of life effects literally every single facet of a child’s growth and development, and I have a literal nature/nurture experiment in my own living room. Mostly, this science just makes me so so sad.
(Accurate comparison of sisters facing same exact experience)
Because of these plateaus, X3 underwent neurological testing and evaluation. Before X3 came to us, she had been diagnosed with ADHD, Sleep Disorder, and ODD – but had never actually been professionally evaluated! She was HEAVILY medicated, with things that made her confused and woozy, because she did not sleep in her last foster home (and who could blame her – she was being abused there, had no idea what was going on, and no one was listening or protecting her – I wouldn’t want to sleep either!). When we put her in counseling and day treatment, the old diagnoses were thrown away and the initial evaluation showed C-PTSD and a possibility of ADHD, with disrupted sleep, but with nothing formal except PTSD. We slowly took her off every medication, and focused on her trauma coping and fears and creating routine, stability, safety, and comprehension of where she is and how she got here.
Neurological testing has now confirmed distinct diagnoses of Anxiety, Depression, PTSD, ADHD, and learning disability – language and slow processing speed; with a side of “some other stuff still needs more testing”. That’s a hell of a list. And I am all up in my feelings about it.
Truly, the first feeling was COMPLETE RELIEF. We have been SO STUCK, and just at a loss how to go forward. We have done EVERY SINGLE THING the therapists have said, and have been just STUCK in this unlivable place, where she has plateaued, does not seem able to learn to navigate life without constantly falling apart. And by “constantly falling apart” I mean “flopping to the floor screaming” or “screaming incessantly for 2 hours after she is told to take a 2 minute break in her room after hitting her sister” or any normal “please do this now” request. Getting through a day with out a screaming fit has become unusual, when a year ago, she was getting better and better. And, no matter how great her day is, no matter how many special things happen, no matter how much love and cuddling and joy and attention she is shown – at the end of the day, she is is angry that she had a hard life, and jealous of any affection and joy shared with her sister. No one loves her, no one likes her, and her life is awful – no matter what is ACTUALLY happening.
It’s a crappy way to live, it’s exhausting to parent, and it terrifies me for her future – it’s very hard to have friends with that kind of nervous push-pull/insecure attachment. LUCKILY, that is apparently the depression – she can’t be available to feel better and actually heal or grow through her pain, if she can’t feel anything other than rage and misery (trust me, I get it!). It is SUCH A RELIEF, to have a plan of action, to have additional diagnoses outside of just “trauma” because the trauma work-around weren’t getting her where she needs to go for a life with joy and pleasure – we were stuck at “miserable survival”. And, her anxiety is SO HIGH (I went through some of her questioning sheets – this peanut is in a seriously intense place) she cannot accept any reassurance or safety even when she knows it is illogical.
The biggest relief was that the testing diagnosed a very specific neurological issue with regards to language that we have been trying, for two years, and entirely unsuccessfully, to explain to her teachers. Her teachers are so RELENTLESSLY CHEERFUL. “She is doing great!”; “I would never have known she didn’t have a full working vocabulary”; “I rarely have kids in my speech classes that are as verbal as her” etc. – which is great, except they are missing this THING this big THING that X3 is able to work around and fake, but that we experience constantly and we know is a missing building block. And the testing showed the exact issue that we had no name for, AND provides a plan for mitigating it! *BIG SIGH OF RELIEF*
The next emotion was amusement; the one funny result is that she scored in the 5th percentile (or “really fucking low”) on “common sense shit kids her age would usually know”. Which is sad, but kind of funny? Because when your kid seems like kind of a dingbat all the time, it’s sort of funny to have a “missing common sense” confirmation. It’s not really a “diagnosis” it’s just a fact – her head held ONLY “how can I survive” and literally NOT ONE THING MORE for five years – it is astonishing how much even tiny babies are learning during those early years, that’s a big gap. Which is why if we say “could you bring me the blue bowl from the kitchen table?” She will hop up, run off, run RIGHT PAST THE BOWL ON THE KITCHEN TABLE, run somewhere (upstairs? The basement? The bathroom?) and then yell “what did you want? The what? Where? I CANNOT FIND IT” over and over, while meanwhile the 3 yr old has obtained the blue bowl from the kitchen table and then X3 flops over and starts screaming because she doesn’t understand what happened, and we implore her, for the 1,00,000th time, to please “slow down, listen to the words, and ask us if there is a word you do not know”. If she does not run off, there is a lot of “what is a table?” And she looks around vaguely and hopefully and guesses – this? Then, what is a bowl? Repeat for every step of the instruction.
After the relief, and very brief amusement, the sadness set in. For her, for us, for the world. Not that any of it is a surprise, exactly, more like, the severity of it, the pervasiveness of it. That she isn’t just getting better through time and love and stability and near-constant life-style monitoring and catering by us as a family. Like this kiddo needed ONE MORE OBSTACLE in life, one more thing that makes her different, alone, scared, confused. And like we need one more thing to try to manage, or one more depressed anxious person in this house! And it’s more of a soul sadness, for her, for the many many children struggling through life, and how absolutely unfair it is.
I am not talking to her much about the diagnoses right now; I don’t think she’s ready to understand them all, or what they exactly mean and it’s a kind of overwhelming list. We are going to start some medication, hopefully get the constant depression/anxiety under control, so she can be available to start feeing safe, happy, loved, calm. I’ve talked to her about that, and she knows I take medication to help regulate my brain which tends towards sadness, so I think that’s a nice place to start. I am ok being sad about this for a bit; I think that is a normal part of the process of addressing a child’s special needs – acknowledging that it IS a harder path. But then I think I will get back to hopeful which is overall where I want to be with these concerns; naming an issue is the first step to addressing it and managing it. And I love a plan!