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Thursday, November 1, 2012

Some Day

I don't know what we would do without our amazing therapists at The Therapy Tree. Our four kids have been in therapy for years and years. So very many days in the past 10 years of pediatric therapies, I have wondered when will all this work pay off? When will things get better, or even just a little bit easier? When will we be able to do things normal families do without it being a total disaster? When will the rages stop? When will we be able to wear socks and brush teeth without having a meltdown? When will we be able to handle transitions better? When will our Some Day come?

The answer is: Here and there, there are bits of progress all around our family if we pay attention.

Ella has been in PT for several months and can now run like a typically developing toddler. Her torso isn't frozen anymore and her arms can swing like they're supposed to. She can twist and twirl and turn like the little ballerina she believes she is. Her physical therapist taught her how to push a swing. That's something I never thought to teach her, and it involves a lot of sequencing, planning, and skill. You have to lean back on one leg, with the other leg in front, push the swing with your arms and let go with your hands while moving your torso forwards, then make sure you're far enough back so that you don't get knocked over when the swing makes its way back to you...that's a lot for a toddler! Ella's PT said she could tell it was something Ella wanted to learn, because she wanted to push a huge teddy bear in the PT swing, so she taught Ella. Hm! Wish I had thought of that. That's why I pay the PT the big bucks I guess.

I am brushing Ella again, which is something her PT recommended. The brushing is helping her sleep better at night again, after months of interrupted nights. Ella's OT is helping her learn to hold a pencil. She is learning to try things, even if she thinks she won't be successful at them. Her Speech Pathologist is helping Ella remember when to use "I" or "me" and now we're working on 'blends', which is something I didn't even know about until 2 weeks ago. Ella can't say an 's' sound with another consonant sound if it's in the beginning of the word. So "school" is pronounced "cool", "spooky" is "pooky", and "Spongebob" is "pongebob." Funny and cute, but also incorrect. We're working on sensory things, eating issues, social skills. 

Aidan made it through Halloween yesterday (major SPD nightmare of a holiday). He got his costume on by himself at school for the class party. He came home pretty tuckered out, but finally focused enough to put his costume back on. Captain America was ready to head out into the Candy Wonderland with his brothers when he informed me he was hungry. So Captain America sat down to his favorite food- a bowl of cereal. Then he told me that he did not, after all, want to go trick or treating. *sigh* Saw this coming. I told him he'd be fine and he had to go out for a couple minutes, and then we could see how he felt. If he had made a big stink about it I would have let him stay home, but he decided that idea sounded good.

Aidan is working in Speech on all kinds of processing issues as well as speech issues. He works hard in OT to deal with so many sensory issues. Tomorrow he starts a group that is run by his amazing OT that will address social skills, handwriting, OCD and frustration. Our therapy clinic is one-stop shopping for our family, and they make it as easy as possible to get multiple kids the multiple therapies they need. 

Here's some Jonah Progress. He has less anxiety. Less school anxiety, less overall anxiety, because of counseling. He is less depressed. He still works really hard in PT because his muscles are very tight and a little bit weak, and that makes it hard to do some things like other kids do. He came home from school the other day and told me that in gym class they had had a running test. They had to run a certain number of laps to see how fit they were. The best they could do was 51 laps. Jonah did 15. He was completely distraught. He said he was categorized in the "unfit" zone, and was devastated. I explained to him how when he was lying in his incubator with tubes all over his body 10 years ago, I didn't know if he would ever walk. I didn't know if he would have to use a wheelchair, or need braces on his legs, or if he would ever run or ride a bike. I told him I am so grateful and happy that he can walk, it really doesn't matter how many laps he can do in gym class. I also explained that this is why he goes to PT every single week. His muscles need a little help to learn how to work the best they can, and his Physical Therapist helps him with that. 

As I talked with Jonah about how far he has come since his premature birth, his face started glowing. A smile broke out, slowly, and then spread from ear to ear. He looked at me gratefully and said "It really doesn't matter if I can't run 51 laps?" I said no! All that matters is that you tried your best, and that you can walk and run and play like you want to. This is progress.

Benjamin. Fiesty, fragile Benjamin. He has had the most challenging issues, and sometimes I've felt so hopelessly lost when it comes to trying to help him. I just keep putting one foot in front of the other and march on, trying to find ways to make Ben's life easier and happier for him. This past week, I saw evidence that all his hard work is paying off. All my hard work, all our therapists' hard work, but mostly Ben's hard work. 

I got home from therapy with Aidan after Daddy and the other kids were already home from their therapies on Wednesday. The house was in a state of complete chaos. The kids weren't listening to Alex. Homework wasn't started.  Dinner wasn't ready and the kids were hungry. And worst of all, Ben was halfway into a rage. What started it all doesn't matter, it was a small issue but to Ben, it was devastating. I tried to glean what was happening very quickly, like an EMT trying to assess an emergency situation. That's how I always feel: what is going on in this situation that is making my son so upset, what or who could be hurt, what objects are in his path that could be destroyed, how can I help him calm down as fast as possible? 

I was doing my usual method of calming Ben down, working through the problem like untangling a knot, a little bit at a time. My methods weren't working and Ben got angrier. He took his medicine that was waiting for him by his dinner plate and started to unscrew the two parts of the capsule to pour the medicine dust all over the table. All this while still raging verbally and emotionally.

That was it. I wan't going to be Nice, Untangle the Knot of Rage Gently Mommy. I had to go into Firm, Get the Job Done and Control the Situation Mommy. I took Ben firmly around the shoulders and started to lift him from his chair to his legs to take him upstairs to his room for time away from the rest of the family, so he could calm down. Something in him clicked. As I held onto his shoulders and firmly told him he needed to go upstairs right now, he stopped screaming and went limp to the floor. He cried "I'm sorry, Mommy. I need help to calm down. I can't calm down. Please help me calm down. I don't want to do this anymore." 

This is the first time in 10 long years that my little boy has ever ever stopped mid-rage and asked for help from me, and then continued to calm down. This past year, he has asked for help to calm down after the anger part is over, when he is sad and remorseful, but never in the very middle of the anger. I was stunned. And so. Very. Very. Proud of him.

We went to the couch together and I held Ben while he cried and worked through his sadness and disappointment. But there wasn't any more anger in him. I couldn't believe it.

One other night this week, I was helping Ben with homework and he was getting upset and very sassy. He said something rude and sassy to me, and then just stopped cold. He looked at me and said "I'm sorry, Mom. I didn't mean to say that that way. Sorry." 

Ok, who is this boy?? 

Progress. Huge progress. It comes when you're least expecting it, when you're not looking for it. It sneaks up on you and blows you away with its magnificence.

Tonight Ben was very upset about not being able to go to some birthday parties his friends are having over the next couple weeks. We're talking on the floor-weeping-"you've ruined my life" kind of upset. But he didn't get angry. Usually any negative emotion Ben feels, he reacts with anger. If he's sad, he acts angry. If he's disappointed, he acts angry. Tonight, Ben was just sad. Heartbroken. 

Here's what Ben does when he is desperate for help from Daddy or me but just can't verbally ask for it. He goes to our art table. He writes a note that tells us he is so very sad. (sad face included) And that he needs Mommy to come upstairs with him to give him some "loving care." No one else can come. Just Mom. 

Then he sends his sad letter in to us on a paper airplane and leaves the room. 

So how insanely smart and creative is my kid? (I know- I'm biased.) He knows he needs help. He knows he can't trust himself to actually ask for it because he might let anger come out when he really just feels sad. He knows he wants just Mom, no brothers or sister, because that would probably irritate him in the mood he's in, and he wants to protect his siblings from that. Smart and creative. My boy. 

I went upstairs to give Ben his "loving care." There was still no anger! Just big, fat tears rolling down his sweet, freckled, perfect cheeks. Just pure sadness. 

Which makes me grateful. Not that Ben felt sad, but that he had the ability today to feel sadness without turning it into anger. We have been working on this for YEARS. Years. And today I saw it just click in him. Incredible. I feel like I'm witnessing something as awe-inspiring as the first man walking on the moon. I am witnessing my son changing and growing, after so much sweat, tears, worry, therapy, frustration, interventions...I'm so very grateful for progress. Even if the progress doesn't stick around for tomorrow, or next week, I know it's in there, in Ben. I know that little by little, Ben is making progress. That's all that's important.

Just as an aside, Ella did follow Ben and me upstairs tonight after a few minutes. She came into Ben's room and sat on the other side of him on the floor, so she was on one side and I was on the other. As Ben cried, I rubbed Ben's back, and Ella's tiny hand rubbed Ben's back with mine. He leaned into us and let his tears roll and we told him we love him and we understand. I'm always in awe of my children's compassion for each other.

My kids. I don't know how I got so blessed to have these four kids. 

There are little bits of progress all around me, in each of my four precious munchkins. Sometimes I have to dig to find glimmers of progress, and sometimes it hits me over the head with its hugeness. If I had known throughout the past 10 years that Some Day, some time, things would start to be a little more ok, it would have helped me get through the darkest moments of hopelessness. I hoped like no one has ever hoped before, with every cell in my body and fiber of my being, that Some Day would come. That we would start to see positive changes. But I didn't know for sure Some Day would ever arrive. I live in hope. One foot in front of the other. On the road to Some Day.

1 comment:

Anonymous said...

Oh Carrie, I am in tears.... My heart hopes, fears, finds joy, breaks,cries and rejoyces right along with yours! So grateful for Bens great improvements especially!
YOU are amazing, strong, courageous, almost unreal in all you do and think and handle.
I pray that you may always find the strength, the wisdom, the courage, the love to keep going and being that amazing mom you are! I LOVE YOU!

Love, Helle