I have felt, for a very long time that Max would be diagnosed with Autism just like Leo was. We were told ADHD, OCD, speech disorder, but not enough to warrant services. That his behaviors were what they were because his brother has behaviors.
Until today. Today we had a doctor tell us that he is Autistic and because of the enourmous amounts of early intervention (because he failed a preliminary MCHAT at age 2) he tested at a level one, mild autism. She said had he not had early intervention he would have most likely been more severe. She also mentioned that hes super smart, and if he works hard on his quirky behavior by age 10 he most likely wont present with any symptoms.
This is the first time I didnt cry at an evaluation. The first time I didnt feel like I wasn’t being listened to. The whole diagnosing team came off so loving. And I am so very thankful. Thankful for support with Max. Thankful for listening ears. Thankful for honest answers. Thankful for fresh eyes.
Hes now on a path to learning even more than he already has, to becoming better and stronger. To learning how to regulate and use his words, to learn to love to learn.
So our family is now Autism strong, both boys in need of totally different help but help just the same. Im ready to watch Max soar, to hear him tell me about his learning, for him to show me what he knows.
This next adventure is going to be amazing, and this momma is ready for it with open arms.
Hindsight is 20/20 right. Totally is when you’re oldest child is diagnosed ASD and when you are asked if you saw a regression, you rack your brain and yup- at 2 1/2 years old there it was. Sensory overload constantly, not gaining words and phrases, saying the same phrases over and over and over and over, only knowing how to communicate via labeling.(dog, cat, momma, milk)
I keep being given weird looks and told basically that I’m off my rocker that it is again happening, at the exact same age, with Max. But today it all became very very clear at an in home ABA session. He became totally overloaded, he shut down, he started screaming and crying and shaking. If you touch him he says ouch over and over and over. This just started. He is 3 days away from being 2 1/2. He is very very slowly gaining words but it’s a fight.
And I get it. I’d be super pissed off too if I couldn’t tell you what my brain is saying. He’s smart, we are so very fortunate that both of our boys are, but he can’t get what is in his head to come out. He can’t tell me what he needs. He can’t say that he’s tired, or that his teeth hurt, or that his tummy hurts. That he can’t focus, or that he just needs a break. And at this exact age, neither could Leo.
Leo would yell. He would cry, he would ball up and rock, he would cover his ears, he would run to a safe place.
Max screams and cries, he throws things and shakes. He answers no to every question and then he burritos himself in a blanket and depending on the amount of time this has all taken he passes out.
His tutor gave me some things to try to calm him down, but we both agree that the “ouch” screaming comes because he flies into sensory overload, so even the lightest touch hurts. I can’t even begin to imagine what that must be like. To not be able to appropriately vocalize what you need, then to get so frustrated all you can do is scream, then not be able to be consoled because it physically hurts. I can’t imagine. And this is happening multiple times a day just about every day.
So I have to check myself. Remind myself that he can’t help it. That he can’t regulate, that I’m going to have to sit and rock him and sing to him and tell him it’s all okay just like I did with his brother. That we are going to have to push everyone to be more patient and take his therapy that much more seriously because I am terrified that he’s not just the super cute kid with a major speech delay. Because I don’t want this to be his normal or forever or even right now.
So here I am again praying for the strength to push through this, for the patience to open my mind and my heart to whatever God has in store for Max and our family. That Max knows that I love him and it doesn’t matter what he needs I’m going to try my hardest to give it to him.
But I’m not crazy. For better or for worse I am so very in tune to my children.
It’s hard trying to keep things together when you’re exhausted.
Today marks the 7th day in a row where I’ve been on my own with the boys for the better part of the day. (Single moms, Moms with deployed husbands and weird work schedules- I don’t know how you do it all of the time)
Our schedule has changed a ton in the past few weeks, and we rarely leave the house anymore. Max has ABA every weekday morning from 9 to noon and then 3 days a week Leo has ABA in the afternoons from 1 until 4. I walk everyday, but most of the time they are short, mile ish walks that only leave me out of the house for 20-30 minutes.
Yesterday was my standing Saturday House Cleaning gig, 4 hours of James Taylor Pandora, scrubbing and no children screaming that the other one was trying to touch them. It is glorious. (A big thank you to NANA yesterday for taking the boys to the zoo so I could get my job done and earn some money)
House cleaning has become a great supplement in our income and a great source of therapy for me. Physical tired is always easier for me than mental tired. And consistently having to
ask for the boys to put cups away
ask them to use words,
keep hands to themselves
listen to the tutors
stop getting in my face
eat what is on your plate
no you’re not getting dessert first
please don’t pee on the toilet pee in the toilet
no you cannot watch dinosaurs
no we are not playing trex in the house
its raining and cold you cannot go swimming
why are you putting a new pair of underwear on
yes you did poop and yes I am going to change your diaper
that is juice isn’t that what you asked for
please do not ride the dog
the cats tail is not a lasso
you can be a cowboy as long as you don’t hit anyone with the rubber snake
rolling chairs are not appropriate step ladder
you asked for Elmo this is elmo
we don’t rip pages out of books
please don’t pee on one another
no you cannot have a 3rd otter pop
there are 3 bicycles stop fighting over the same one
no we are not having chickensandfrenchfriesandsauce 3 times a day
I’m planning on a very long walk today. Here’s hoping my body stays together enough until I actually get to make it happen.
Those words pretty much sum up life around here as of late.
I walk, every single day. At least a mile. My body is changing in a great way, I feel better and have lessened my stress. I am also now a month off of my migraine meds and 7 months off of blood pressure meds. I think sunshine and movement are cure-alls for me 🙂
Tomorrow is our first official IEP for Leo and the transition from a Special Ed preschool class to an inclusion preschool class. I don’t have an idea what we are in for. I do know that we all seem to be on the same page and I am hopeful that everything is going to transition smoothly. Prayers are always welcome. 🙂
Max starts ABA 5 mornings a week the beginning of May. I am very hopeful for progress with his communication and behaviors. Again, Prayers very welcome.
With these changes I have to give up my Life Group that I am part of through church for the foreseeable future. Although I did suggest Skyping me into the study 🙂 I know this is again a season of life and change that will not be forever but feels kinda long.
Leos stimming, Maxs lack of words and general stuff around here has been on overdrive. I have made the decision that what gets done (house work wise) gets done. What doesn’t, well that can just wait until tomorrow. Things seem to get done more effortlessly, still not totally sure how that happens, but it does!
I wish I had more to say. I’ll get it together better after tomorrows meeting.
Until then Peace and love 🙂
We are embarking on yet another adventure with Leo. In September 2014, we pulled him from public school and started at home ABA therapy. He needed a stronger foundation, he needed clearer words, we needed to fine tune his dealings with sensory overload. In September I sat on my living room floor with the program manager that suggested this course of action because his class wasn’t what he was needing. We set a goal that fall 2015 he would head back to public school hopefully into an inclusion class.
It’s March, and not only are we headed back to public school on April 7th, but we are working on going into mainstream, regular public preschool through the school district. 5 months ahead of where we had hoped and prayed, faster than I had imagined. (when we pulled him from school my heart was heavy, it was such a forward and backward “progression” I wasn’t sure when or if we’d get there, and that was okay as long as he was learning).
Here’s how all of this works: (to the best of my dealings…)
Our school district has multiple levels of early education: Early Headstart (for kiddos starting at age 3, that have special needs), preschool, transitional kinder (they take the first half of a kindergarten year and stretch it across a whole year to get them ready for kinder) and then kinder.
Okay, here’s what has to happen for us- because Leo is registered as a special ed kiddo.
He is re-enrolled and starts back in a special ed classroom.
We have an I.E.P. (individual educational plan) with his teacher (who thank the Lord Almighty is the teacher he originally started with and knows him so well, AND will see his growth), school staff, his ABA tutors and us to talk about transitioning him to being a general ed kid.
Then the decision about where to place him is made.
He is moved to the appropriate classroom and we finish the school year in said classroom and start the fall in the appropriate class.
It’s a process, it took about 50 phone calls. But we are here, and in motion and that is awesome! So I started looking at the criteria for kinder. What they learn, the goals they have to meet or exceed. Um, woah. (for reference http://www.cde.ca.gov/re/cc/documents/alookatkthrugrade6.pdf )
Leo is smart. Very smart. He has trouble with things, like writing. Or rather holding a writing instrument. My mom bought us some books and things to make it fun, but that is probably his biggest struggle at the moment, and a big part of kinder. So we will be working like gang busters on it.
My hope (at the moment, or rather until he totally exceeds my wildest dreams- because he does every time) is that we start the fall in a mainstream preschool, next year he has transitional kinder and we move to kinder when he is 6. This is where I’ve set my goals for him, knowing that there will forever be things we are working on, and factoring in some set backs, but knowing that he is so very capable and has a want to learn that is something kinda fantastic.
We have the resources available to us and people that want him to soar and I couldn’t have asked for anything more for this guy.
Max is making progress with his words, but we are still behind. His advocate is going to ask for ABA services for him, and she thinks if she can get this approved and we start asap that by age 3 everything will be smooth for him. And that makes me so excited. Hopefully we will find out in the next week or so where we are at on school for him.
Yup, you heard me. But I guess before I can expand on that statement I should make a few more- that one of my bestest buddies NEVER LETS ME LIVE DOWN SAYING…
I never wanted to get married or have children. I was always good to go with being Auntie Katie drinking her cocktail and smoking her cigarette and loving and spoiling kiddos.
Then I met Joel, and fell hard, then got to know him and realized this guy made me rethink the whole wanting to get married thing. Like I could actually see myself living with him forever- say what?!?! I missed him if we were apart, he didn’t disgust me when he brushed his teeth, he was (and still is) pretty easy going, and up for adventures. I was like yeah, this guy. I asked him to marry me, and a few days later he said yes LOL. I know I know.
So we were content, started a journey moved to Spokane and one day my body told me it was time to have babies. I was like- yo uterus, check yo self. I DONT WANT KIDS. But, I totally did. So we took a leap of faith and poof Leo. And then a couple of years and a miscarriage later, poof we ended up with Max.
When we moved back to California Leo was about 3 months old. We had to get settled in a house and get Joel back to work, and when he was 7 months old I went back to work part time. It was a nice mix- I got to hang out with my lil monkey guy and be productive in a grown up world. Then I changed jobs and went to work full time. I’m not going to lie, I was JAZZED about Leo getting to go to daycare. He’d have friends, and make crafts, he’d have holiday parties and learn songs. How exciting, and selfishly I was so excited to be bringing home a paycheck, having a reason to get schnazzed up every day and forming relationships with grown ups that I had very recently been mourning the loss of.
I lost that job about a month before Max came into the world- our company sold and I was tossed into being a full time mommy. We kept Leo in daycare for a while- he was doing so well….. and then his slide started and things changed. Max was about 3 months old when financially we had to pull Leo out of daycare. Shortly thereafter all of the testing started and we started on his journey to new ways of hearing and learning. It was a lot- a newborn and trying to shuffle him around. But I still had the desire to work. I always thought, we can get through the testing and get him into a class or school that will help him grow, I can find a job put Max in daycare and it’ll all be good.
I was dreaming.
I still dream.
I’m not going to lie. I’m 2 years into this stay at home mom job and I still don’t get it. I’m not sure if it’s different when you’re not shuttling your kids to therapies, and preparing the house daily for at home therapy, but I just don’t get it.
Don’t get me wrong- I have been BLESSED to see my kids take their first steps, say their first words, eat everything under the sun, put clothes on for the first time, blow bubbles in the bath for the first time. I am watching them grow and change. But I do feel like the world is passing me by. Like I have no way to connect to people who aren’t mommies.
I also can’t even seem to get a call back when applying for jobs. So I guess that’s a sign from God that I’m where I am suppose to be. But I still don’t totally get it.
This is not a job for the faint of heart, for the unsure, for the tenderhearted, for the tired, for the grumpy, for the perfectionist, for the holder of the O.C.D., for the foul mouthed, for the determined… or maybe it is.
It’s thankless, it is 24/7, it is all encompassing, it is repetitive, it drains everything you have in your reserves, and people choose it. CHOOSE IT. I still don’t get it. But it has chosen me. I do not believe “God never gives you more than you can handle” I believe he pushes your boundaries of comfort until you have no choice but to ask for his leadership. That struggle even in its darkest hours, when you want to throw your hands up and walk away a little something creeps in and softens that anger/hatred/mad you have at that moment. That not choosing this path but being placed on it is not happenstance, it’s not by mistake it’s because you have a gift you are not yet aware of. That you are going to meet people also on this path that are going to enrich your life, challenge your thinking, expand your heart and show you love and compassion you aren’t accustomed to being shown. It’s because it’s not about you, or me. It’s about a journey.
And while I’m on it, and I hear that women choose this I want to ask them why. Why with everything there is in this world to try to do, why would you choose this?!?!?!? And I look at my children and I know, because they are so very worth everything I could possibly offer to another human.
So I say a prayer and thank God that my heart changed when I met my now husband, that his love made me want to build a family with him and that our beautiful children need some extra time and hands and that their needs have put me in a place I will never be comfortable with, but I know I am fully needed.