It’s been a while

I haven’t written in a while. Life is amazingly busy and overwhelming and sad and exciting and forward and backward moving all at the same time. This Autism life isn’t for the weak of spirit lemme tell you. And as the boys get older things are changing. The rigidity and refusal to step outside of their comfort zone is increasing. The more they are becoming very solo in their day to day. They have their moments with one another or friends at church, but their interactions with other kids and grown ups are shorter and shorter as of late. They are happy being alone with their action figures or books or kindle. In their own worlds. And I am lucky that they let me into their world, even if only for a few minutes a day. What I mean by that isn’t them talking at me. They can do that for hours on end. Telling me all about animals and volcanos and “gidget” spinners, that happens daily. I am talking about telling me how they feel, or what they need. Those are conversations that rarely happen without a fight. An emotional fight. And it hurts. It hurts my heart and my mind. It is exhausting trying to explain it to people that are part of our world.

My world lately feel like all I do is negotiate with terrorists. Over food, or kindle games or wii games or how we play with dinosaurs. And then the other is always having to explain what position we are in with the kids. The changes that have happened from last week to this and to be told its fine, when it isn’t. Or told that they don’t see the problems. Yeah, because for days before wherever we are we have had no less than 12 conversations about what is going to happen, how we have to behave and what we need to do if it is too much.

I thought, because I am dense, that post potty training would allow me to stop carrying a suitcase for a purse. But no, I now have to keep emergency food and noise canceling headphones and sunglasses and kindles with me just in case. Because we might be at Target and everything is too loud or bright or red that day and they can’t turn off the sensory input of the store, and I really need shampoo.

And this is life. And this is normal for us. And guess what, it sucks. It sucks to know that when it gets to a certain temperature I have to be cautious about taking them to social functions because the heat hurts. Because if it’s too hot the sun hurts. Because 2pm might be recharge time that day. And there isn’t a damn thing I can do about that. I have no control. NONE.

Every parenting book and person with a child without special needs talks about “having and holding control”.  I can traffic direct and attempt to do damage control, but I am in no way in control of the following things:

seizures, sensory overload, meltdowns (which include ugly words, having things thrown at you, being hit), not sleeping, not eating, not being able to find words.

So you breathe through it, and cry and walk away and try to not engage the behavior but also have to make sure they don’t harm themselves. That is getting  harder now that they are getting bigger. So I feel like a failure almost daily. Because I do yell and I cry and I can’t control the ugly that comes from something being wrong and my kids not being able to tell me what is wrong.

My spirit is crushed any time I hear a kid years younger than mine perfectly communicate anything to their parent. My heart is crushed when kids want to do crafts with their parents, when they want to go see characters from shows, when I see kids doing kid things that we can’t. And lately this has been harder. And I hate it. And I hate me for hating it.

But it is what it is.

So that’s life lately.

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Hey brain, shut it

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Coffee, breakfasts, get them dressed, get yourself together,  pack lunches,  stop the fighting, threaten to throw legos away…again, make breakfast,  scamper to the car with arm fulls of shit that has to come with us, forget breakfast ans head back into the house, get all cargo loaded, drive to school, promise Max 5times we are headed to his school not some other place of unknown desnation, get to school and sing to at least one song before walking in, balance both boys stimming in different ways on the walk in, drop Leo at his line, walk Max to class, make it back to my car….and breathe.

Head to work, uhoh its 1045 head to get Max, argue about having lunch in tbe cafeteria,  go to cafeteria, argue about chocolate milk not being a meal, corral him back to the car, head back to the office. Get him settled with kindle and his actual lunch, back to my desk, work for 20 minutes and he needs to go potty,  walk to the potty, argue about going potty, finally finish and head back to the office, work and refuse to play his game for him, uhoh its 2and time to head out to get Leo.

Back to the school, attempt to keep Max on the sidewalk, no you cant kick the tree, dammit if you ninja kick one more thing, thank God Leo, lets go and get to church. Annnnnd the questions start from Leo, are we going to TKC, what time are we done, can i bring every book i own, who is there today, whered my bible, whats for dinner, when can i go to omapapas, how many days until christmas, “JINGLEBELL JINGLEBELL ROCK” (mind you the drive to church is 5 minutes long)

Get them settled at TKC and back to work either at the office or home. Then dinner and laundry and dishes, homework, workout, bath, try to relax.

In between im trying to feel out seizures and find the best placement for the boys, worry about surgery, and about my dad, trying figure out christmas and where im not making it as a wife and daughter and sister and friend.

And I am exhausted.

And yet, mt brain wont shut up.

 

Motor skills and seizures and Autism oh my!

Earlier this year we had family genetic testing when Maxs test showed two genetic disorders. Leo too has Autosomal Genetic Nocturnal Frontal Lobe Epilepsy. Today was our official first appointment for him with our Neurologist. We talked about Leo, growth and behaviors, school and his smarts, and his struggles. I’ve gotten more used to talking about the boys struggles but it is still very hard.

She tested his motor skills and his eye tracking, his balance and mimic ability. And he struggled as he always has, with motor skill things. But something I didn’t realize was how off his eye tracking is. She called it Oculomotor apraxia, the delay or absence of voluntary eye movement. It is a neurological deficit, as are his issues with motor control. He, at 6 cannot hop on one foot, touch his thumb to each finger on either hand. He struggles with writing and running, he’s clumsy and isn’t very aware of his body.

I knew that this was all part of Autism for Leo, and Autism is a condition that falls in a subcategory under a larger neurological problem.. and that problem includes his motor control. I was told today that we can continue therapies to strengthen what he has but this lack of control is going to be forever for him, and I felt that all too familiar gut punch.

The boys have the ability to tackle just about anything that they encounter but the hurdles and hurt they have to roll through first hurts me. It makes my mommy future planning punch the breaks and remind me that the only thing I can plan for their future is being with us. I have to plan my future in that manner. If/when they are able to leave they can, but the reality with seizures and autism that they might not be able to tackle this big world without Joel and I guiding them.

I pray every night for a little reprieve for the boys. For them to have a few moments of “normal”, to not be worried about being made fun of, that they won’t stutter when they get overwhelmed, that they will just get to be kids.  Kids that don’t need headphones with loud music, or to dig their fingers into an arm when they aren’t sure of their peers. Kids that can hold conversations with their peers, not at them.

And we celebrate the things that are a little easier today than yesterday and we celebrate things most families don’t have to think twice about. And I get jealous. I wanted those kids, the neurotypical ones that play baseball and do karate and can handle birthday parties of friends. And while we are making forward movement with it we aren’t there. And we might never be.  And every party we can’t make, and every time Leo is worried about being made fun of and every time Max loses his shit because he can’t get his words out, I hurt a little more.

But I keep pushing forward. Because that is what we do, we put on our braves faces and smiles and tell them that they are amazing, and that no one will make fun of them when they want to tell them the lifecycle of a fruit bat, how they need to ask God for help (7 million times over) or when they need their noise canceling headphones and Mommys friend to hang onto when all the other kids are singing and dancing. Reassurance, it is the best thing I can give my children.

And my kids are amazing. The love they have for others I don’t see in adults 4 times their age. Their acceptance of others, their determination to do life like the other kids, they are amazing. And they were gifted to me. What a beautiful gift. A gift of unconditional love and patience and learning and loving when it hurts and celebrating when it’s small. They have opened my heart to the world more than I could have ever thought.

Even with another challenge ahead of us and more seizures to monitor I will be thankful tonight for this life, these boys and getting to learn along side them.

 

“Love bears all things, believes all things, hopes all things, endures all things”- 1Corinthians 13:7

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Giving, stuff, comfort…..

Giving is something that seems so foreign as of late. We live in a culture where most people are looking out for what they are going to get from a job, another person, the government, etc. It is a pretty powerful evil that people completely over look. If it doesn’t benefit me, my family or my  situation- why would I engage.

Because life isn’t about being comfortable.

WOAH. yeah, I’m sure that was a punch in the gut to some. But guess what- being comfortable in all situations isn’t what this life is about, or rather it isn’t for me. (And I’d hope it isn’t for you too.)

We are all so spoiled with cars, and phones and houses and air conditioning (or swamp coolers) and grocery stores. We have any and everything we could ever need at our fingertips, and we think that anyone that doesn’t use, isn’t privileged to or can’t afford to be “comfortable” is lesser. That they don’t work hard, that they aren’t trying. Guess what, those with less tend to give more- of their time, treasures and love.

We talk about it in my Bible study, the things. Americans especially, are so attached to their stuff. But that is all it is. Just stuff. It doesn’t love you, it won’t smile at you when you need it, ask you to pray when things are good or hard, it won’t tell you that it is happy you are alive. The stuff won’t visit you in the hospital if you fall ill, it won’t hold your hand. The stuff.

When you add the “whats in it for me” with the stuff and the expectation of comfort, you get a lot of empty people that seem to turn a blind eye to people and things that should matter. That person in need of clothes, maybe they came here from another country to make a life for themselves and found out that their education means nothing here. Maybe they were too far along in age to earn another degree, maybe they were promised help that never came. Maybe. Maybe they are in need, maybe they are going to drive you nuts with their needs but what they are asking for isn’t out of line, just going to take some time to fill.

That person that might be homeless, might not be- if you talk to that person, you might find out that they haven’t ever been able to take care of themselves and when their caregiver- their mother- passed away 7 years ago they have been lost, and a pair of socks, a listening ear and a prayer mean so much.

Giving doesn’t have to be a huge ordeal, and so many think if it isn’t a big gesture it doesn’t matter, WRONG. The minute you decide to step outside of your comfort zone and give to another, a smile, an open door, a handshake, a hug, it has become a big gesture. So get out of your head, your comfort zone and be kind, extend a smile, help. Put the judgement aside, get rid of the stuff, bring it back to what matters- Love.

Love is it.

 

Thank you

Thank you for making me a wife and mother.

Thank you for providing for us both financially and emotionally.

Thank you for teaching me patience and softness and love like I hadn’t had before.

Thank you for always being up for an adventure.

Thank you for loving me when I am lovable and when I am not.

Thank you for holding my hand when I need you to.

Thank you for being you and letting me be me. We are better together than we are on our own.

9 years ago we promised forever. For me, our love now is deeper and more meaningful than it ever has been. I love raising a family with you. Thank you for choosing me.

Happy Anniversary.

Now go grow me some tomatoes 😉

And, another diagnosis

Today is Maxs IEP for placement for fall. Yesterday I wrote on facebook how seeing the words “severe autism symptoms” was like a gut punch, because it was. I know that his symptoms can be all consuming- when he says the same word or phrase over and over for 5 minutes and there is no getting him to stop. Or when he continually slams his entire body into things. Or when we are in public and he his rubbing his face on my hand while we are walking.

All of these things are just part of our daily with him, and have been for the longest time, so I forget that they aren’t neurotypical behaviors. And there isn’t anything neurotypical about our household so why I would think there would be any resemblance to those types of behaviors I’ll never know.

And this diagnosis doesn’t change who he is, how damn cute he can be, the amount of dirt he likes to move or how many pop tarts he eats. But it adds another thing to the list of things that keep him from being “just another kid” and that was my hope for him.

My hope for both boys was to grow and learn and be active and healthy, and they are. I never in a million, trillion years thought I would be using acronyms like IEP, BCBA, KDVS, SPED. And here we are. Surrounded by them, each one medically defining our kids and trying to remember that they are more than these letters. They will be more than these letters. They are capable of more than these letters.

Sunday our Pastor at church was talking about how being a mother is consistently preparing to say goodbye, sending your kids to school, to sleepovers, into the world to build their lives. And I found myself in tears because where we are at with the boys the thought of saying goodbye puts a lump in my throat.

Joel and I have talked about our plans for the future, and our plans include our children having to live with us forever. Not that they will, or that we would in any way try to hold them back from soaring, but our reality is that we don’t know how their autism is going to progress, regress, stay stagnant. We don’t know if they are going to be able to understand certain daily living things. We don’t know how long seizures are going to be a part of Maxs life, or how the KDVS is going to change his organs for the better or the worse. So we are planning, on being the House O’ Blue eyes with 4 human inhabitants for life.

And this isn’t something we dream of as future parents. We talk about our kids getting to go to school, and play baseball, make honor roll, go to college, travel the world. And right now we plan one quarter at a time. Because of the changes in schooling or medications that may have to be made. Because we don’t know if a classroom setting is going to be too much or not enough. Because we don’t know when the next seizure is going to hit. Because we haven’t had scans on Maxs heart and kidneys yet. Because we live in a very pliable world, that may need to be shaped differently at any given minute.

So yes, these words sting. Yes we are so excited that Max gets his chance to be in a school setting in the fall. Yes, we have two wonderfully loving boys. Yes, our world is always changing and always challenging but it is always overflowing with love.

 

Never did I ever…

Never did I ever think I would be a wife and mother.

Never did I ever think I would love as hard as I have every single day for the last 6 years and 63 days.

Never did I ever think I would be a special needs parent.

Never did I ever understand what an IEP was, until 3 years ago.

Never did I ever want strangers involved in my world.

Never did I ever think that schedules and therapy and specialists would be a huge part of our lives.

Never did I ever think 90% of what I cook for my children would be tan.

Never did I ever think that I would have to hear the word “Autism” attached to my children

Never did I ever think I would have to fight for the help I need.

Never did I ever think this would be life.

Never did I ever know love, patience, laughter, togetherness, faith, persistence, emotions and want as I do now.

Never did I ever see myself as an advocate for those who struggle with words, and noises and light and smells and being homeless and having nothing

Never did I ever think but I get to live such a beautifully imperfectly perfect life and for that I am so very thankful.