Ahhh. Today was THE day. A day I forgot about until I was reminded by the Children's Hospital recording but...nevertheless, we made it. :)
We were in the van before 5am with all 12 of us. It was dark, the children were all excited and off we went. And as we did, we smiled to each other that the kids are excited to do these mundane days with us.
We arrived at the Autism Clinic for our 9am appt. I went in with Taizi. Dean stayed in the waiting room with the other 9. (My job was much harder, we both agree on that one! :)
We first saw the speech pathologist. Then the behavioral psychologist. Then the psychiatrist.
Each one was amazing.
Taizi was Taizi. He bit me several times. He grabbed my hands to bite my ring. He head butted me multiple times. He kept banging his head HARD on the arm of the chair over and over and over. He hit his face with closed fist many many times. He sat gasping air, spitting, crossing his eyes and shaking his arms and legs.
Several times the doctor yelped as I was about to get my jaw smashed with his head.
He was not in distress. He was laughing. Semi crying. Chewing his tongue. Just being Taizi.
All through the discussions they were watching closely.
Then we got to the last doctor. She was really sweet. I never know the responses I will get...IN Seattle...when they find out we have 10 children. But this team? They were so wonderful. She kept saying "I really feel I just want to get to know you...and see how you can be so amazing". Amazing, huh? Sigh.
Just yesterday I was feeding Taizi and he was spewing his food everywhere and then proceeded to dump his water everywhere...while going frantic with his arms and legs and almost wacking me every few seconds. Tirzah was there watching and I was smiling. Like...a forced smile. She said "why are you smiling Mommy?" I told her I've learned that I can indeed do hard things but now I'm trying to focus on doing hard things...with joy. She said "oh that must be very hard. It looks like you are forcing your smile" I assured her that I was but I'm sure that if I force it enough, it will soon become natural. She smiled.
After several hours in these appts we were told to go for lunch and come back in 1.5 hours. I came back alone to meet with the behavior specialist.
They could not figure out why it took us 3 years to get in to this appt and I assured them the craniofacial team has many frantic recorded voicemails and conversations of me begging for help. Of waking and seeing more large purple bruises on Taizi's body and begging...for something to help. They were more than sad to hear, for no known reason, there was zero urgency to get us help.
In fact, when I last spoke to his team I told them our other children feel we are not getting great medical care. I love the team...but really. She asked why and I said b/c they have seen for 3 years their brother who is extremely sleep deprived and very "self injurious".
Well..here we are. And as hard as I pushed...I'll have to trust the timing b/c it was NOT for lack of effort. And...maybe even emotionally charged begging.
In the behavior doctor's words: "Taizi is globally delayed. His file is extensive. He is also PROFOUNDLY mentally delayed and PROFOUNDLY Self Injurious".
Ok. Let's just pause for a moment. I feel like a huge weight has been lifted just in hearing that.
I wanted to cry. I felt...validated. That I wasn't crazy...after all. Yes, he's cute. DOn't get me wrong. But I'm not from a 'medical family'. I don't have experience with 'mentally delayed' individuals and I've always felt my feelings were tainted by the fact that it's me. Even Dean has felt that his delays are mild and very manageable. Now...that's coming from extensive experience working in an institution for the mentally handicapped. (Let's not get angry at my choice of words...there is nothing condescending about my words whatsoever...it is simply what the institution is.)
Today to hear top professionals in this field state that Taizi should have been at their doorstep THE DAY he was first seen @ Children's for intensive therapy and help. Made me want to cry. For many reasons.
I try to live focused on "no regrets". No, I'm not perfect. Yes, I fail. But I can't go back and think what if someone took me seriously and got us here sooner. They didn't. And I tried. Hard.
Even on his file it says "mother referred child, no doctor referral". Lovely. It's really not the case but perhaps because I was the one insistent on this appt...it's appropriate.
We were also told that Taizi's behavior issues are the very very hardest to treat. As they are "sensory" 98% of the time. In other words, he's not mad, not having a fit, but he injures himself because it feels good.
So much of this behavior was enforced 3.5 years of living in a crib in an orphanage. Since he is NOT atypical, and has loss of 2 senses (full deaf and partially blind)...combined with profound developmental delay....it was much more significant. A "typical" (Healthy) child could be "loved out of these behaviors" whereas Taizi...cannot.
Let's just go back to that. 3.5 years in a crib, shaped this child into who he is today. If born into our family would he be typical? NO. Definitely not. Not saying that at all. Just saying it was compounded by his very rough start to his life.
So here we are today, in what the doctors referenced as a very "rich environment". Full of warmth, love, lots of happy, healthy children...but Taizi still has very self injurious behaviors. You can put him in a room full of toys and he will probably still stare at his fingers and cross his eyes and hit his face. No amount of color or fun will pull him out of it.
They could not believe we have gotten him eating. Real food. I was told that is very very very difficult to get a child with Taizi's level of disabilities to eat. Table food. Well...many of you remember me blogging about the hours of screams we endured to get here but here we are.
They were shocked. Saddened. And really in total disbelief that he has not been getting disability services. That we have no help. No home care. No therapists coming to our home. Nothing. They said he qualifies for every service at every level. Full care.
I smiled as I told him my motto is "I can do hard things". He said "is that how you've talked yourself through this?" I smiled he said "this isn't hard...this is intense. And we can't believe you've done it for 3 years".
At least I know by "hard things" ... I wasn't exaggerating.
Immediately: sleep study. Based on his loud snoring and his breathing they witnessed in the office they believe he may have something significant that is interrupting his sleep. (You have no idea how many times I've suggested this and been shrugged off). They want that done ASAP.
Then they have prescribed meds for sleep but under the care of his cardiologist.
Then meds for just calming him. Often given to children with profound mental delay.
Then hooking us up with full care disability services in our home once we move in a few months.
Then an intensive 20 week program with this team. Where we will come every week for several hours one day and do intensive behavioral therapy. For 20 weeks in a row.
From there they will hook us up with local behavioral therapists that will come to our home and work together with this team.
When I asked why coming back here for 20 weeks vs local care (only because I know others will ask me that), he said "because this is profound, profound self injurious behaviors and that calls for the best of the best in therapy and I'm it".
Now you see why I feel lighter today.
For three years I've carried the burden that maybe I was just weak. Not strong enough. Not cut out for this job enough. To...today...discovering....no. That's not it at all. Taizi is not slightly delayed. This is very significant and he needs intense medical help.
So thankful for today.