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Friday, May 16, 2014

Here's To The Wavers

My second grader had a concert at school a couple weeks ago. It was one of those moments where a parent feels really proud. Aidan had been practicing his pirate songs for weeks. In the car. In the family room. With his little sister as his sidekick. In the bathtub. He was ready. I always wonder in these situations if Aidan's anxiety will rear its head and cause panic when having to be in front of a crowd of people. He even had a little part where he had to say "Arr, ye scurvy dogs!" with two friends.

As the kids filed into the stuffy, humid gym that was packed with families, I scanned the lines of pirates for my own little matey. As he walked in, Aidan looked through the bleachers for us. When he made eye contact, we both waved at each other frantically. My mom used to tease me because whenever my younger brother performed his trumpet on stage, I would wave like a crazy person from the audience. I was bursting with pride on his behalf. There was my little brother, on stage, playing like a professional. Doing something I could never dream of having the talent to do. And I was so proud. But my exuberance was possibly a smidge embarrassing to my parents. I think it's fun to be the mom now, because I can wave until my arm falls off and I won't embarrass anyone because my kids are waving at the other end just like I'm waving at them. 

I almost fell out of my seat, waving at Aidan. I was so proud of him. He made it to his bleacher with his friends. I took a moment to rest my arm, and glanced around at the other families. I just about burst into tears because of what I saw. There were so many arms, waving frantically in the air, just like mine. There were cameras snapping. There were parents jumping around trying to get their kid's attention. I was among fellow child-admirerers. I just sat there and felt the energy of all these mamas and daddies and grandpas and grandmas and sisters and brothers, all so proud of their pirates. All waving like crazy people at their babies. It was wonderful. It made me feel warm inside, knowing that I was among fellow Wavers. 

Aidan also had a Mother's Day program at school last week. Two years ago, in Kindergarten, he had a rough time during the Mother's Day Tea. I struggled too. This year was very different. It was so much fun to see how far Aidan has come in so many ways. He sang songs with his class for the moms, and then each child had a little poem for their mom that they read out loud in front of everyone. I was prepared for whatever Aidan could do that morning. If he did it all, wonderful. If he couldn't make it through what was expected, that was going to be fine too. But my little guy did it all! He read his poem with pride and then presented me with some treasures he had made for me. The whole thing looked similar to what all the other 23 kids in his class did, and if you didn't know Aidan two years ago, you wouldn't have known what a huge deal this was. But it was huge. He made me so proud, just knowing how hard he's worked on all these things to get to this point.

Yesterday in the waiting room at therapy, a little girl who I know pretty well came up to Aidan and asked me what his name was. She said "Name?" I said his name is Aidan. Then she turned to me and in her sweet fairy voice said "What's your name?" I told her it's Carrie. Then she walked away, content that she had her answers and ready to move on with life. Her mom turned to me and said she has never, ever heard her little girl say the whole sentence "What's your name?" before. She always says "Name?" What I had just had the privilege to witness was monumental for that little girl and her mama. It was huge progress. It was the result of so much work, so much therapy, so much love from the girl's mama. I told my friend that I had goosebumps. I told her how I know exactly how it is to see your child progress in leaps and bounds, and no one else in the world realizes it because it's such small progress. But you know where your child started and how far they've come. You know that whole sentence represents a huge, huge victory. I know Aidan's Mother's Day program is a huge, huge victory. I was so glad my friend told me about her daughter's sentence so that I could celebrate with her. So often I celebrate alone, which is fine, but it's much more fun to celebrate the little things with someone who really understands how enormous those things are to us. Us mamas who wait, watch, hope, love, and do everything we can to make sure our kiddos have the best life possible.

Here's to the little things that change a mama's world every day. Here's to the waving arms of proud parents. Here's to the exuberance with which I celebrate all my kids' incredible achievements, big and small.

Saturday, May 3, 2014

My New Framily

I'm trying to balance things this week, but I'm not sure I'm succeeding. Alex is out of town for the next few days. Jonah was sick for a day and a half. Ben was sick for two days. Ella finished her antibiotics for her double ear infection and near-pneumonia, and then she said her ear hurt. So during the time I had planned to put away the mountain of laundry in my bedroom yesterday, we raced to the doctor instead. Sure enough, she still has a nasty ear infection. 


Not to mention the end of the year preschool picnic, 10 therapies, stops at Walgreens for various medications for everyone's ailments, and the trips to school to pick up forgotten items and sick boys. I think I could have driven to Colorado and back for all the driving I've done this week.

I'm still trying to figure things out with Ben's school regarding his teacher's bullying. I don't know where this will all end up, but I know I'm really mad. Stress.

This week did have a nice ending. I officially have a new Framily. You know, friends that you feel are like family? I've started to get involved with a Tourette's Support group, and I was invited to dinner with some moms whose children have Tourette's Syndrome. I am such a proponent of letting other moms know they are not alone in their struggles, but until I sat down around that table with those other Mamas who know just exactly what my family is like, I didn't realize that I have felt alone too. I listened to the other moms talk about their kids, their struggles, their successes and joys. I could identify with all of it, and it was all familiar. I started talking about what has happened to Ben this week at school, and of course I'm such a dork, I started crying. (Not sobbing at least, so a little dignity was spared.) The moms said they have all cried about all these things too. They were so warm and welcoming and hilarious and amazing, I have deep respect for all of them and gratitude for letting me join their circle of understanding. 

I have realized over the past couple weeks that I am very strong when I feel alone. There are times when I feel not weak, but vulnerable, and I hate hate hate that feeling. Because every time I feel vulnerable, I feel the tears in my throat. I feel like my coat of armor may have a crack in it, and if there is a teeny crack, it all might crumble. I might fall apart and not be able to stand up strong again. I hate feeling vulnerable. But there are some times when I just feel it and can't shake it. Church is one of those places. My therapist's office is another place, but that is the one place I don't mind feeling vulnerable. And when I see friends, or should I say Framily, who know exactly what my life is like. Darn tears. I hate you tears. 

I know it's fine to be vulnerable. It's good. Healthy, even. Blah blah blah. The social worker in me knows all that. But the Mama in me is trying to just keep fighting all the fights I have to fight. I'm trying to give every child what they need to be healthy and happy. I'm trying to keep ear infections at bay and keep teachers from crushing my children's spirits. I'm trying to help kiddos learn to sleep, and eat more than Cheerios and vanilla yogurt, and brush their teeth more than once a month. I'm just trying to put that mountain of clean laundry away for crying out loud!! And if my armor cracks and crumbles and I feel vulnerable, I'm afraid I won't be able to do anything I need to do to keep this family on track with living and growing and thriving. 

I'm trying to feel comfortable with my vulnerability, to sit with it and be present in it. I'm trying to show myself that I can feel vulnerable at dinner with my amazing new Framily, and still get up the next morning and put out fires all day long with gusto. I'm trying to explore how maybe feeling vulnerable with people who really understand me can actually give me strength. I know there are people who get me and support me and are in this special needs life with me. And that does give me strength. It's like super glue for my cracked armor.

I am so grateful for all my Framily, new and old, real family and real friends, for supporting me. Keep stuffing that glue in my cracked armor so I don't fall apart, ok? If I can keep my armor together maybe I'll even get to that mountain of laundry today…

And maybe, just maybe, after a lot of practice, I'll learn someday that being vulnerable is ok.

Thursday, May 1, 2014

Fight Night

Wednesday nights are fight nights at our house. Which is ironic because they are also Youth Group nights. Ben, Jonah and Alex go to church every Wednesday night and spend the evening learning, worshipping, socializing, and supporting peers. And every single time they all come in the door from Youth Group, they are all in the middle of a humongous argument. It's sometimes the worst argument of the week, as far as intensity, second only to Ben's Weekend Meltdowns.

Last night, in particular, was especially horrid. Jonah had stayed home because he wasn't feeling well. Apparently, Ben had had a major meltdown in the car about something and it spilled over when he and Alex walked in the door. Ben curled up next to me and cried and yelled and hugged. He talked about a lot of things. Things that hurt his feelings. Things that worried him. Things that made him upset. 

I told Ben that sometimes when people switch gears from one activity to another, their brains just go bonkers. It's really stressful, and sometimes they get crabby or angry because of that stress. I said it seems like a lot of times when Ben has to get into or out of the car, this is stressful for him and so his brain freaks out. I asked him to brainstorm (no pun intended) with me about ways to help him go from the excitement and awesomeness of Youth Group out to the normal-ness of the car, Dad, and Jonah. I asked him if he knows what irritates him about making that change. Does the music of the radio irritate him? He always seems thirsty in the car, and the cause of many meltdowns is that Ben needs a drink and there isn't one available until he gets home. I said we will make sure next week that Ben has a big water bottle with him for after Youth Group. He thought that was a great idea. I asked him if it would help to have earphones and some music to listen to right after Youth Group ends all the way until he gets home. He said he thought it would be better to have noise blocking headphones with him to mute things like his brother talking or annoying radio sounds. He also said he needs Dad to know that in therapy we've talked about how when Ben is upset, it helps him to get a big, firm hug. The deep pressure helps him calm down, and the touch reminds him he is loved, cared for, and safe. He said he wants Dad to hug him when he is having a hard time dealing with life.

When I am with Ben and he struggles with transitions, I can identify what sets him off, and what the root of the meltdown is. But it's hard when I'm not at Youth Group, so I don't know what the problems are on the way home. But I'm really tired of the three guys walking in the door every. single. wednesday. night. in a huge fight. So we have to figure out what's going on, what's setting the boys off, and how to fix it. Usually it's a pretty easy fix. I know when I pick the boys up from school on Tuesdays to jet to therapy, I have to have water bottles and snacks for all or there will be an epic meltdown. Or four. That's something I've learned- that if the kids are hungry or thirsty, that's enough to set them off into a rage. Easy fix. So next week we'll try water bottles in the car after Youth Group, and noise blocking headphones. And hugs. Don't forget the hugs.

I took Ben up to bed after he and Dad made up. Ben crawled in bed, laying his tear-streaked cheeks on his blankie with a sigh. We "Talked About Our Day"-- our nightly routine. Ben always says "Can we Talk About Our Day?" So we talked. Then Ben mentioned that a teacher that day had said in front of the whole class that they "shouldn't pull a Ben Newsom and only finish half of the sheet" they were working on. 

Uh, what now?

I asked Ben more for more details. He said the teacher had said the same thing about a friend of his, who also has Tourette's Syndrome, the day before. Ben said this comment had made him feel very embarrassed because the whole class turned to watch him as he wrote on his paper, and the teacher had hurt his feelings. As Ben talked, I got more and more upset. My heart sank. I asked Ben if I could talk to the teacher about this. He said no, because then if the teacher talked to him about it, he would cry and feel embarrassed. I told him I was very upset that this had happened to him, and that it was not ok. I started getting teary and told Ben I was so upset that I felt like crying. Which he couldn't believe, because I only cry about super important things.

We ended our Talk in a positive way and Ben asked if I could stay in his room while he fell asleep. So I lay on the floor with my head on his stuffed turtle and let the tears roll silently down my cheeks. I've perfected the art of silent crying, which really comes in handy a lot. I am so tired. I am so tired of constant struggles. I'm so tired from the work I do to help the kids thrive, and then to have it undone by a teacher, where I send my boys every day and where they are supposed to be respected and nurtured…that is just too much. 

I have the kids all in a zillion therapies to try and help them as much as possible as they grow and mature into adulthood. I have them see a holistic chiropractor for all-natural supplements and vitamins to help their bodies and brains develop right. They all started a yoga class last week. They see an energy worker to help clear their negative energy and anxiety. We do brushing and tapping and hugging. They do zero balancing. We do every single thing that I think might help the kids. And to know that one teacher can undo so much work by a comment she makes in front of my son and all his peers…that is just too much.

After Ben fell asleep I went downstairs to cry out loud. Sob, actually. For a really long time. Because I can feel Ben's heart. I feel how he feels. I feel how he felt when the teacher ridiculed him. I feel how crushed he was. And it crushed my heart too. So I just sat and wept last night. Actually, my eyes are still leaking. And my dad just called to chat and I cried more. My face now officially looks as puffy as the Pillsbury Dough Boy's, only not as cute and without the giggle. So if you see me today and ask why I'm so puffy, I am going to lie to you and tell you it's my allergies. Otherwise I'll start crying again.

Alex had to step in and take action last night since it was just too much for me. He sent some emails and asked the teacher to give him a call today. Which she did. She said that what she told the class was that they needed to write a page. And that if they wrote big, like Ben, then they needed to write a page and a half.

Now. I'm the first one to say oh man, my kid misunderstood something. He got it wrong. He doesn't 'get' sarcasm. He overreacted. And in this case, I don't think he did. I don't think he got it wrong, or overreacted, or misunderstood. This has happened in the past with this teacher, where a comment has been made that has hurt Ben's feelings, so I touch base with her about it, she tells me a different story, and we move on. We asked Ben this morning if the teacher's story is what actually happened. He said "No!" Here are my clues. "Pull a Ben Newsom" is not part of Ben's lingo, part of his vocabulary. He and his friend talked yesterday about how this teacher makes comments about them that they hate. His friend had the same comment made about him the day before. I can tell by Ben's face when he's not telling the truth, and let me tell ya. He's telling the truth about this one. Which infuriates me. If Ben's large writing is an issue, because of his fine motor skill problems, the teacher could have said to the class "Please write a whole page." Then she could have gone quietly to Ben's desk and told him privately that since he writes large, he needs to write a page and a half. Or she could have just left names out of it altogether and there wouldn't have been any problem. 

Alex explained to the teacher that Ben is very literal. Regardless of the words the teacher used, the message Ben received is that he is not good enough. That his peers should mock him. That he has some problems. That he is a trouble-maker. That he is not doing his best. And that is not ok.

If Ben had gotten up today and asked not to go to school, I would have said awesome. Let's go have a mental health day and do a million fun things to erase the horrible feelings this teacher has left hanging in our hearts. But he didn't ask to stay home. So I have to have my own mental health day. Ben has an IEP due to his anxiety, which often leads to school avoidance. What does a teacher think will happen if she calls him out in front of the class for a perceived deficit? Does she think that will calm his anxiety and make him happy to go to her class?

The teacher said she will talk to Ben today and apologize. That's wonderful, but the damage is done. How many times this year have I asked the school to recognize Ben and Jonah's invisible disabilities? To give them some accommodations that will alleviate anxiety, help them to not shut down when they get 'stuck' on something, help break down large assignments? How many times has a social worker or teacher told me this year that Ben is manipulating me, lying to me, not telling me everything in order to get a reaction out of me? Regardless of whether my son can physically fit his body into his locker, his desire to escape is what concerns me. Regardless of whether the teacher said "don't pull a Ben Newsom" or something else derogatory, the message was sent to Ben, and his peers, that something is wrong with him and he is bad. This is not ok.

Who can blame Ben for having a meltdown after Youth Group over needing water, when this is what he has had to deal with all day at school? When this is what he is holding in, and holding together, all day? There is always more behind a meltdown than what meets the eye. At least Wednesday night Fight Nights can be fixed, with water bottles, head phones, and hugs. Not everything in life is so easily repaired.