Who's struggling with inclusion here?

I’m very proud of my boy. No matter how many goals we put before him, he always tries. Sometimes I hate autism. I hate the bleeping sensory challenges. My little boy doesn’t get to be just a kid all that often. In school he has to learn to cope and adapt. Other kids, non spectrum kids, they can transition fine 10-20 times during the school day. My boy—he’s struggling, he’s trying, he’s coping. He’s asking for squeezes, he’s asking for moments, he’s trying and he doesn’t understand why he can’t control his body. 

His teacher is unaware of all the success we’ve had, all the therapies, all the interventions, how far we’ve come to get us here. She is new to autism and my boy is her introduction to all that comes with it, she’s lost too. She doesn’t know how to help. 

I’m the mom, the driver, the therapist, the hugger, the one who has cried countless times in the shower after the kids have gone to bed. I’m the one who sat on the floor crying along with my boy as he was in full meltdown mode. I’m the one who second guesses everything, who wants to homeschool so he never ever feels different or bad, who never cries for me. I’m the one who is struggling right now too.

Oh F you autism and the horse you rode up in. My kiddo may be diagnosed with autism, but it doesn’t make up all of who he is. He’s a little boy and the hell if I’m going to let you take away his right to an inclusive education. 

And anyone, and yes dear Pre-K teacher this is for you, if anyone stands in his way to this education—you don’t know me. Because I may be struggling, but I know my rights, I know HIS rights, and damned if I’ll ever stop advocating for him. 

So feel free dear teacher to assign blame to my child for a scratch and bruise on another classmates arm. Feel free to send home an incident report blaming my child even WHEN YOU DIDN’T FLIPPING SEE MY KID DO IT. 

I will call and schedule an emergency IEP meeting and yes even haul the church priest in there with us if I have to (Catholic school). Nice to meet you too sweetie. BTW I spoke to the school principal today and you should be prepared to have a meeting with her about this. See you tomorrow. I guess you know me now huh? My boy is more than the convenient person to blame. He is a 4 year old boy who wants to learn and play and I'm the mom that's going to make it happen.

These old shoes. . .

Dear Teacher, Teacher’s Assistant, Therapist, Therapeutic Support Staff:

This week we’ve been making some thank you gifts and cards for all your hard work and dedication. I’ve struggled with them because they don’t seem ENOUGH. 

Thank You seems like such a simple way, like an inadequate way, to express our appreciation.

When JD started special instruction pre-K, he had a 2 word phrase limited vocabulary. That first day he hid underneath the desk. His anxiety and sensory problems were challenges. Currently, JD is much more present, able to converse, able to sit and listen to a story time. JD’s a happy little boy with a wonderful sense of humor, a strong curiosity and I don’t know that I’d know all this if it weren’t for how well he’s progressed. 

As he has changed and matured, I have also changed. I’ve stopped being the terrified sad mother and have dared to dream and hope that one day we could mainstream to a regular setting school. My goal at that 1^st IEP meeting was to have him in a regular Kindergarten setting. I am terrified and incredibly thankful as we say good bye to SPIN.

You may have been my son’s teacher, teacher’s assistant, speech or occupational therapist, or his staff support. But you have also been someone to give me hope, to offer helpful feedback or advice. You have been the brunt of my pushing, my demanding, my questioning, and sometimes even my crying.

As we approach our last day at SPIN, I struggle with the words to convey how emotional this is. SPIN has been our home and now we’ve outgrown it like a pair of his shoes. I’m the one who wants to cry and hold on to the desk chair, scared of what’s to come. I cried the first day I dropped him off, I followed his bus that 1^st day, and now that we’ve reached it, I’ll cry our last day. Bittersweet tears of thanks, of good bye, of awe for the work you do. You will always hold a very special place in our hearts. I won’t ever forget how much a role you played in my son’s early intervention. We're going to miss you ladies so much!

You Folks Rock. Thank You! Thank You! A million thank you’s!

Birthday party

      JD & I went to a NT birthday party last night for an old friend's son who happens to also be my godson. We used to be very close and have drifted after a falling out. So last night was going to be awkward for me. He didn’t nap and it was after 7 which isn’t a good time for us, and blah, blah. In other words, I had some misgivings about attending. I didn’t want to disappoint a 5 year old boy though so we rushed out and went.  

      I spent most of the night redirecting, focusing, reigning in, chasing, while trying to prevent a meltdown or confrontation with him-- like chasing a chicken. Integration is important, it’s how he'll learn and grow. Its important to me that he have NT friends. We're not going to live in an isolated bubble. Autism birthday parties are so much easier though because everyone there gets it, we don't worry about awareness or tolerance, judgment. If you’re an autism parent, you get what I’m saying right? It’s a totally different experience.

      He didn’t engage, he had little proprioceptive sensors, poor impulse control, poor sensory processing, poor communication skills. It was while he was lamely batting at the piñata in front of very athletic kids that I let it go. I stopped worrying that he wasn’t enjoying the experience. He was flapping his hands, stomping his feet, his bubbly laugh and his smiling blue eyes as he spun in circles. He was having fun and that’s all I care about.

     As we were leaving and saying good bye, JD had some quiet time to chat with the birthday boy. They both played with some new toy. My boy engaged and had a conversation! For me it was a special moment. For the kids, just a regular whatever moment. Integration is going to happen on his terms and once again my boy is teaching me.   Later that night my kiddo was laying in bed twirling my hair and said: "I had fun at B's birthday party. I love you mami. Can you lay with me tonight?” I’m glad we went. 

Sundae Night

     A while ago I did away with my to-do list that I posted on the fridge because it was stressing me out. Well today I made another one. But it’s in a notebook. That way I can "forget" I wrote it when I decide to embrace the craziness of toddler life or when it’s freaking me out because nothing is getting done. The to-do list for everything and the whole carry a notebook everywhere to write them was a little too OCD for me and honestly, it wasn’t making me any more organized. It was literally just stressing me out. I don’t think I’m meant to be so organized.  We live on schedules and routines, but sometimes I have to go a little "crazy" and be impetuous. We have the best of times when I embrace an impulse.

    

     I stopped to pick up a rotisserie chicken on the way home tonight. I walked right past the ice cream aisle “Oh what the hell” I thought, “why not?” My kiddo had been asking to make ice cream sundaes all week. It sounded like a nice family activity on Sunday. For some reason I always think Sunday should be family day.  I bought birthday cake ice cream flavor, all the fixings for sundaes, including real whip cream or so it promises on the can. But I forgot the walnuts according to my hubby. 

     When JD saw the ice cream and the bowls the hands started flapping and feet started stomping. Yup, happy excited tot. Sundae bar at the kids table for Sunday night dinner treat. Waffle bowls, plenty of ice cream, and yes it was messy because of course one of them broke their bowl. They loved it! Smiles all around. Never a dull moment! It is so fun to have three toddlers! You get to be a child sometimes right along with them. BTW—my to- do list is in the trash outside the Acme.   

Sad

I keep counting months. I keep thinking September/October and I keep thinking about what could have beens. I try not to think about it or even talk about it. Every time I think miscarriage, I want to break something, hurt something, because I feel like falling on my knees and wailing. I know my f-ed up body didn't cause anything right? At least that's what both my doctors say. But then what did cause it? I am very much going through this alone. All the sadness and other emotions tied into this pregnancy loss and I feel like I have no one to turn to cry, so I don't. It's not about having friends or support to turn to. It's just such a deeply personal pain and its hard to express and share. Anyways, this weekend I'm kind of sad. Again. Plus I weaned the girls about 3 weeks ago and my hormones are out there. I'm trying to keep from getting depressed because I don't want to go back on meds. I also am sick as a dog with strep throat and some sort of upper respiratory. Not feeling so hot. It's hard to be sick with 3 sick kids. I think I'm just tired. I'm hoping this funk passes. No rest for the weary or sad.

Conundrums’

Oh man, an incident report was in the school bag today. I hate them because I know it’s been a bad school day and I wasn’t there for my kiddo. He’s cried and mommy couldn’t hug or kiss better. Quite frankly it makes me feel like a sh*tty mom. I’m a mixture of anger, frustration, embarrassment, and sorrow. Apparently the substitute TSS didn’t show up on Friday. Don’t even get me started! The bus was late picking him up (again, let’s not go there), he arrived a half hour late and missed story time. JD has transitioning issues and they are made worse when he misses an activity at school.

I understand where the teacher is coming from. I get it, I know she’s doing the best she can, underpaid, understaffed, over ratio with attendance, I like his school and the staff, he’s had phenomenal progress while there, but dammit I’m looking forward to the new school in September. I hate that I feel like my kid is an oversight amidst the other special needs classmates. And I can’t help but feel like somehow we get the short end of the stick just because he’s labeled high functioning. Then I feel like a bigger sh*t because I’m whining about the care/attention he’s getting when there’s other kids who need more care/attention. Am I making sense? But I can’t focus on the other kids, because well they’re not my kids. And I can’t focus on being fair to everyone, because well they’re not my kids. My only goal is to be the voice and support for my kids. But then I feel selfish.

So either way I feel like a sh*T. And that my dear is how I’m ending this.

Conundrums’

My friend Hon

Dear Jess:

Tomorrow is your funeral. It seems surreal to me. If I stop and think about it, I’ll burst into tears. I keep checking your facebook page to see if you’ve updated it. People keep tagging and posting pictures of you. Damn it, how is it right that you’re gone? The last time I saw you, you were doing better and out shopping for Tori. That was last summer. You’d just finished up a treatment. We caught up and instantly it was as if we’d last seen each other the day before. But that’s just the type of person you were.

I thought for sure you would beat the f-ing cancer. The last 3 years we’ve kept in touch via facebook or the occasional time we bumped into each other at stores and such. The kids and I always prayed for you, every night. On Sunday, the day you passed away, I said to myself; "wow, I haven’t talked to Jess in a bit, let me see how she’s doing. We don't normally go this long without talking." I was going to shoot you a message but I forgot. I left facebook open to your page. The next morning I woke up to the news on facebook. Oh sweetie, I cried. I hugged my kids close and cried. I called my husband right away and told him "my friend Jess died." I am so sad. Those words seem inadequate. They don’t adequately describe the painful loss. The world is a little bit dimmer and sadder without you. You were most definitely a kindred spirit and someone I valued as a dear friend. 

I wish I could tell everyone what a wicked sense of humor you had, how you taught me to call everyone “sweetie” and “honey” because that’s what you called me. My girls are “sweetie” now and most of my girl friends are hon or sweetie now. I got that from you. I’d tell everyone about your great smile and how you’d stick out your tongue, make a face, hand gestures, and you’d go kick some a## if you had to.  How you started off being a co-worker and became a friend. I'd tell them how happy you were when you got pregnant and how we shared breastfeeding stories and advice. How we shared 1st time mom experiences, when our babies turned 1. This isn't right, it's not right that I am going to my friend's funeral. There are no answers and no reasons to justify this loss.

I so wish you were with us now. I hope the prayers, positive energy, friendship, and love offered comfort. You will be missed. I will miss you my friend. Be at peace. And Jess-- Fuck Cancer, I'll miss you hon.

Love,
Sweetie