More worry. Always with the damn worry.

We had Max’s Psychology evaluation with our local regional center. The Psychologist was the same initial psychologist that did not diagnose Leo with Autism. ( we went back a month later and he was diagnosed within minutes of a different Psychologist meeting him) So I have my reservations with his decision.

We also had his evaluation with our school district. They blew through it. Parts of it made me uncomfortable because they assumed he knew things without testing him. Is he smart, very much so. But there are problems, concerns, issues. And I can’t figure out how to help him right now.

His speech is slipping backward more in the past week. He is losing more initial letter sounds, he has “language” right now but most of it is not recognizable to most people. His current speech teacher said this week with his lack of words she was able to hear a very pronounced lisp and is wondering how much of that is effecting the rest of his attempted language.

The Psychologist through the regional center said he was going to write his report that his speech delay is still a huge concern and we would not lose funding for speech services. Then last week our liaison tells me that they never have funding for children over 3 for speech services. So we lose his regional center help in a month. We have an IEP meeting with the school district next month, but if they don’t find enough of a delay he will not be given services through the school district either. So there is a chance that my child, who still cannot communicate and has an overload of sensory issues will lose all services next month and I don’t know how to help him.

There are so many things with him that are worrying me.

His hands are clenched in fists almost all of the time, he can’t speak in understandable sentences, he can’t answer simple questions a better part of the time, he melts down when he gets frustrated, If a bath towel touches him he screams, washing his hair is like a wrestling match, he can’t handle that water on his head.

Every interaction with him ends up like a speech session. Trying to get him to slow down and very intentionally make his sounds. But putting them together it doesn’t happen. It’s like his mouth literally will not form certain letter sounds. I watch him fight and fight and then get frustrated and shut down. When he shuts down, it’s over. I can’t get him to even try again.

Trying to get Providers and Insurance to acknowledge his sensory processing issues is hard. And his sensory issues are so outside my scope of knowledge. Even with reading and listening to his current O.T. and trying all kinds of things I can’t get a grasp of his problems. I can tell you what sets him off, what he can’t handle. I can tell you how I try to make him comfortable with any of these things, but it doesn’t last long or at all and I feel defeated.

I want him to be able to talk to me, to tell me that something hurts or that he just doesn’t like it. I just want to be able to communicate with my little guy, and I can’t. And I don’t know how and right now my spirit is pretty squished.

So pray please, that we get some help so that I can continue to learn to help him learn and grown.

Envy is such a pain

I have a very hard time with envy. I have a lot of it in life. Not always with physical things, but with situations. I’ve got to get over it but it’s so freaking hard. There are things I wish for, I want, but we just aren’t in a place to have them.

I want:

date nights, preschool for both boys, less time alone, more financial stability, a new(er ) car, for my weight loss to progress more, to not have to meticulously budget everything, a weight set in my garage, to get out of the house more, a real vacation.

 

I envy:

people with neurotypical children (yes I know we all have struggles), couples that have scheduled date nights, couples that get to go out of town, take anniversary trips just the two of them, kids that have vacations with grandparents and aunts and uncles and cousins, families that spend lots of time together outside of houses, moms who get early morning gym time daily.

I know it’s not forever, I know I have so much but sometimes it’s just what it is. Joel will always go to work at o’dark thirty o’clock and I’ll never have early am gym time unless I can find a cheap weight bench for my garage. My children will never be neurotypical so we will have challenges above and beyond the normal things. We will always have to budget, I’ll probably never own a new car and who knows when a vacation will ever be time and financially possible.

So, this year we have two family weddings to attend, both out of town, both a financial puzzle but we will make the most of the quick trips. And we are going to camp, as many weekends as we can this summer. Even if it’s just to right outside of town. We are going to work on our sight words and writing, trying to tie our shoes and singing songs.

I’m going to figure out how to rid my mind of the envy I have of others relationships and date nights and family trips and figure out how to make the 4 of us more than enough for my heart. It’s my own battle and I need to let go of these things sometimes it’s just hard.

Overly emotional Mommy, party of me.

I have always been an emotional person. It’s gotten worse with becoming a mom and now being able to help in Leo’s class and seeing these HUGE leaps these kiddos are making daily, weekly, monthly and getting to see and experience the love his teachers have for the kids and us mommies and daddies it’s gotten a notch worse.

Worse isn’t the right word. My emotions for my children have grown. The steps forward and the growth in both of them makes me cry, the set backs and rough patches make me cry. And the same happens for the friends in Leos class. Some of them had a really rough start with preschool and the growth in language and friend skills, in coloring and singing in counting and direction following is amazing. They start the school year as little guys and gals, set in their own home routines and have their worlds rocked but in the most beautiful way.

These kiddos come from all kinds of family situations some with siblings some without, some spend lots of time with grandparents and some split time with their own parents. Some parents both work some are blessed like I am to learn with their kids. The one commonality they all have is when they enter Room #1 and the love that the teachers share with each and every child.

These teachers have been staying so upbeat and excited for the holiday season through illness and the excitement of 19 3 and 4 year olds. They taught them songs and poems and got them ready to sing for a whole cafeteria full of family members. And today all of the hard work and love shined so very bright when these beautiful children made their way to the stage.

I had a breath holding moment of fear before the curtain opened when I looked around at the amount of people that were in the audience. They had practiced every day on the stage but to an empty cafeteria. Today was THE day. How is Leo going to do with all of this? A year ago he probably would have tried to run away. Too loud, too many people, to bright. Not today.

The curtains open and all we hear is “WOAH LOOKIT ALL THE PEOPLE! HI MOM HI DAD HI MAX!!!” theres my guy. And I cried. No, I balled my eyes out.

I cried because of how great they all were doing sitting and singing, like little pros. I cried because of how hard we’ve worked with Leo to have confidence in any setting. I cried because he wasn’t scared. I cried because he’s such a big guy. I cried because I’m his mom and I am so proud of him, excited for everything he gets to experience that is brand new and because he is such an amazing kid.

So I cried, giant rolling tears. And my heart is so full.

 

Dear Leo,

This week was a rough one. I totally understand. You weren’t feeling great, it’s cold, there was a holiday right smack in the middle of the week, one of your teachers was out sick most of the week. I get it buddy. But here’s the thing. Changes are going to happen. I know you have a hard time with them. I know that sometimes you get all scrambled up and can’t tell me that you’re not okay, but in those moments I need you to take a deep breath and try to find your words. Your nice words.

Walking you out of class today broke my heart. I know you wanted treasure box, but you know how important it is to earn it. And we earn it by having nice words and hands, by making good choices and by listening to all of the wonderful teachers we are so blessed to have guiding us at school. Mommy doesn’t like to have to worry about your actions. I know you know how to be a superawesomefantastic dude, because you are so much of the time. And I know that you know how to ask for a break if you’re feeling overwhelmed. So lets slow down for a minute and listen to our body.

Promise me you’ll try to choose nice words and hands next week. That if someone puts their hands on you on the playground that you’ll say “No I don’t like that” and tell a teacher instead of pushing back. That you’ll try your food and not put garbage in a friends food when they aren’t looking. That you’ll be kind. And that you know that no matter what your actions I love you so very much.

I’m proud of all of the progress you’re making, and the things you’re learning. And know that we all have bad days and rough days and days that we just don’t want to do what we need to do, but we still do them. Know that on those hard days I’ll be waiting to pick you up with a giant hug and some snuggle time when we get home. Talk to me. Talk to your teachers, we all want to see how wonderful you are.

I know you’re really upset about not getting treasure box this week but we will try again next week. Max and I will be there as much as we can to help you when you’re feeling overwhelmed. Take a big deep breath my love. We all get through the rough days.

Love,

Mom

Today I am just mad

I am mad that I don’t have a full time job, with benefits and a paycheck substantial enough to make us comfortable again.

I am mad that the boys don’t get to be in preschool with other peers all day.

I am mad that we can’t afford our Gardner anymore (and haven’t had him in like a year). Our yard was beautiful and I miss that.

I am mad that my husband and I are like passing ships and the time we do get as a couple is so few and far between and usually filled with grown up stuff.

I am mad that I am mad. I shouldn’t be mad. We have a beautiful home and amazing kids and food in the fridge and clothes on our backs but I’m still mad.

And it’ll pass, it always does. But for right now I am just mad.

“doesn’t function well in her current life”

Physically, yes. Physical strength is what I’ve been relying on to get me from day to day. If I can just focus on that the rest will go away. My sadness, my jealousy, my emotional exhaustion, my endless want for “normal” things. It’ll all just go away if I make myself physically strong.

And I’ve been trying, and successfully have made myself physically stronger, all while exhausting myself to keep from dealing with my emotions. And it doesn’t work. The stronger I get physically, the weaker I become emotionally. I feel so broken, so fragile. I’m sensitive to the stupidest of things, eye rolls, deep breaths, comments. My patience is so small and I cry often. Sunglasses are my savior for that.

I see pictures of friends vacations with their kids and it kills me. (I’m excited for them and love seeing their pictures) but a vacation isn’t in the cards for us for so many reasons. Therapy schedules, money, time away, house sitters- that cost money, my husbands work, totally uprooting the kids schedule. And it sucks. And I am jealous, and it hurts so bad, because I’d love to just get away from all of the normal shit and see something different. A new perspective, see the boys in a new place, leave my house for more than a few hours. I just want to leave.

Instead I get up every morning and prepare for a full day. Therapy for the boys- both in the morning and afternoon, grocery shopping, laundry, cooking, and then on certain days my paying gigs that start after I’ve put in close to a 12 hour day of being a mom and wife. And I just don’t want to do any of it.

A month ago the kids were making awesome progress. New words for Max, new sight words for Leo. Behaviors were simmering down. I somehow convinced myself that we’d grow out of needing help. That all of this autism stuff is just a right now thing, but in a year or so it’ll be good. They will have earned how to cope through things and we could be a normal family. And then they both had huge jumps back with behaviors. It hit me like a Mac truck- THIS IS FOREVER.

What the hell is wrong with me.

I know this is forever. I know that my kids are smart, but there are things that are going to be forever against them. Leo can’t handle transitions, changes, loud noises, a hairbrush brushing his head, smells. You can’t understand him when he gets excited or upset. To get him ready for a major change- like changing schools- which is happening in 19 days- a month before we have to start talking about it. And even at that, I’m trying to gear myself up mentally for the meltdowns that we are going to have with a change that big.

Max is learning words but it’s slow. I’m still convinced he can’t hear, and his repeat hearing evaluation is NOVEBER 23. The Children’s hospital in our town is a joke to get into. So until then it’s trying to find patience with his lack of words, not being able to understand what he wants and trying to get through the meltdowns from lack of communication.

So for the time being, I’ll be physically strong, emotionally broken, jealous of families that get time together, hating the fact that my kids have to struggle. I’ll smile because I have to, pack my days with tons of routine to ward off melt downs, and physically exhaust myself in the hopes of being too tired to deal with my emotions.

Maybe tomorrow, or in a week, or in a year I’ll feel different.

The week of May 24- May30

It was a busy one. I decided to take pictures all week, but just do an end of week “heres life for us this week” post 🙂

So here it is!

Joel and I celebrate out 7th wedding anniversary tomorrow, the 31st. Tonight we get a date night!

Leo loved the Indy 500. He was looking for McQueen the whole time

Somehow Max grew. I don’t know how but he looks 15 times taller here than he did the night before

This. Oh yes. Local handcrafted ice cream.

This kid and eating my very precisely weighed out food.

Leo has decided he’s a dancer

Max had a rough nap wake up and Leo scratched his back to make him feel better.

This kid has a major love of ice cream

Leo has an eye appt on Monday, im thinking he mind need glasses, we are practicing.

Maxs favorite things, dirt, playdough and painting

New pool, the other one had a horrible leak. When this one goes we are investing in an above ground pool with a filter

k t 

Thank you

Please and Thank you are my two ALWAYS words. And it seems like people, not just my toddlers, forget the power that they have in all situations.

I’m sweeping the porch thinking about how giving thanks sometimes feels like it HAS to be said, even for things that should be givens. Like thanking someone for participating in something that they should be participating in. So the question pops into my head- when did it become a habit of thanking or praising everyone for every little thing. And when should I be thanking or praising and I don’t.

Should I be thanking the people in my house for participating being part of family chores? Should I be praising my children when they are asked to perform a task and they do it without a fight? Aren’t these things that should “just happen”? Like, shouldn’t the conversation go something like this:

Me: “Time to pick up your room”
Kids: “Okay” or throw a fit or whatever, and then it gets picked up
and we move on to our next event

No?
No, we have to have a party for every….little…..tiny….thing. And it sometimes drives me crazy.

I am all for parties when we have tackled a new something, when something that is harder than hard just happens. But should that be for all chores, and expectations? I don’t know. Positive reinforcement is a great tool, but when is too much too much.

I don’t get thanked sometimes for days for the things that “I am just supposed to do”. (Lets be real, that would be everything I do every day because Stay at home parents only receive the thanks of the people in their households and fall into being expected to perform all house chores as part of their job).

And I still find myself thanking people for everything. Honestly it’s in the hopes that they will continue to thank others for the things that they do, even when the thing isn’t huge. Some days being thanked for getting Leo a glass of milk is all I need to change how poopy the day has been.

The parties for goal achievement are going to continue, the thanks for general help too. One day it’ll all make sense- right? 😉

Steps forward, patience and rational thinking….

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.

Mommy life, and “style”

I used to wear makeup daily.
Heels and dresses or super cute put together outfits were the norm. I didn’t think about it, I just did it. I shopped, because I had the money and time to. I bought super tall heels and had awesomely cute short hair do’s. I would rock out in the morning while getting ready. I shaved my legs on a regular basis.

And now it seems like it’s all gone.

Thursday I was awake at 3:30am. So I had time to get my reading, and laundry and dishes done before the boys woke up. Thursday I wore makeup, and did my hair, and wore pink. Not just pink, but a pink flowy gauze skirt (Leo told me I was pretty, a pretty jellyfish). I had so many compliments. It was odd. I didn’t feel much different- I was me. Just a me from a few years ago. Not the current me. I’ve fallen into jeans and t shirts, workout clothes and tank tops. flip flops and tennis shoes. Not because I don’t like to get fluffy, but because I just don’t have time.

Pair all of this with a changing body (I’ve been on a weight loss journey for a couple of years now, down almost 70lbs! woot!) I’ve had to get rid of most of my go to “cute” clothes (although they were in sizes I prefer not to wear), and now having a limited income to replace them. I thrift store shop. I’ve found some super cute things, some not so much but slowly I am building a wardrobe I like. Very slowly.

It’s hard to make yourself a priority when other people and things seem more important. As the boys are entering toddler hood and can entertain themselves for 10 minutes before all hell breaks loose I do get a teeny tiny bit of time for me- and that is usually long enough to moisturize. But I am looking forward to getting back into being that person again.

Being that girl that can cover the bags under her eyes, and wear a small wedge and perhaps earrings and a necklace (grabby hands have had me shelf all jewelry except for a necklace I wear daily- and I’ve thought about taking that one off a million times- my wedding ring and studs in my second earring hole). I love having a pretty simple life and home but I don’t like looking like a simply plain woman. (If that makes sense please raise your hand)

For all the mommies out there that struggle with this too, I’m sending you a hug and a prayer for an extra 5 minutes to put your face on or pick out a cute outfit or whatever it is that will help make you feel like a million bucks.

Circa 2004 or 2005

2015- on a good day 🙂