Success

We have an amazing principal at my son’s school. This guy truly believes that every student can be successful. He is probably one of the most optimistic people I’ve met. We appreciate him. School is a complicated thing for our son with autism. It can be the definition of a perfect storm. Or given the right accommodations, it can be … tolerable.

When you have a child with special needs in a school setting, you are thrown into a confusing land of IEP’s and IEP meetings. I belong to a private local facebook group of moms with children of autism. There are countless meme’s regarding IEPs and IEP meetings. These things, these Individual Education Plans (IEP’s) are an incredible thing. Without making changes to my son’s environment, he doesn’t stand a chance for success.

School meetings begin with everyone in the room (school administration, special education teachers, general education teachers, parents, advocates, therapist, etc.) going around and saying positive things. What is going well? Where have we saw growth? I understand the purpose of starting the meeting like that. Start positive so the negative doesn’t seem quite so overwhelming.

However, sometimes this is tricky. And in my experience, it’s getting trickier the older my son gets. But why? I have theories. I always have theories. Here is one.

Success just looks different. When each of my children started walking, they’d take a couple steps, stumble, waver in balance and we’d clap and cheer the entire time. This was something to celebrate. A milestone. When our babies were early walkers and would fall learning how to walk on different surfaces or with different shoes, we were never discouraged by their progress. We didn’t expect more. And the world around them didn’t expect more.

At age 13, the world has expectations. And the majority of the population meets those expectations. My son’s peers meet them. The infamous teen years that come with anxiety for parents. The knowledge that your child might be entering a rebellious state. The fear that they might be just as rebellious as you were. Or worse. I can have these conversations with the majority of the parents, because I have three neuro-typical children. I get it. They are going to be hard and I will have many sleepless nights with them.

But as my friend’s daughter, just months older than my son, gets her learners permit and eagerly picks out accessories for her new car, my son is playing with his stuffed animals. Each stuffed animal has a name and a back story. As kids in our middle school venture into dating, my son continues to live in his world of Pokémon evolutions. His peers for years have had access to technology freedoms, a world that he’s just beginning to navigate with his parents monitoring every.single.move.

Success is just different.

My son recently went to the Washington State science fair. This is success for him. The school didn’t just take the top three, top ten or top 50. They took everyone who wanted to go. My son wanted to go. That is success. Having a desire to do something semi-academic is cause for celebration. Willingly giving up his beloved Saturday of low expectations at home is success. Being willing to go on a ferry, something he is terrified of, is success. Being with his peers, being in a crowded space, being surrounded by noise … all success.

Now here’s an insight into the life of an autism family. Success always comes at great cost. Our son had a successful, long day. And we were all so proud. The next day was going to be rough. Everyone knew it. Everyone anticipated it and everyone braced for it.

I’m extremely thankful for people like my son’s principal. I can’t begin to articulate how meaningful it is to us as parents when people invest in our son’s life. How grateful we are when people are kind and patient.

So, in our next meeting, when we go over success that my son has had, we will include the science fair. We won’t include the following day. We’ll keep moving forward. We’ll continue to praise God for our son. We will continue to measure success differently. And we will continue to hope in Christ, not milestones.

Number 2

When our kids were little-r we used to speak in code, and it was easy. We have four kids and each child received a number. That code has changed and adapted as they’ve gotten older. Sometimes, I’m so good at speaking in code that my husband literally has no idea what I’m talking about. But as adults, our time to visit without children present is minimal. So, we have to be creative, or at least that’s what I tell my husband when he gives me his, “What are you talking about?” look.

Our number 2 is an incredible kid. He’s smart, sarcastic, hilarious and a stuffer of emotions. I remember being in the hospital in South Dakota and my parents bringing our oldest son to meet his new baby brother. It’s a sweet moment that forever lives in every mother’s heart.

At birth, number two became part of an autism family. Starting at age 1, I would drag him to IEP meetings for his brother while he quietly munched snacks, patiently waiting for our focus to turn to him. Number two had a significant amount of respiratory issues his first couple years of life. Lining up childcare for our oldest son, while number 2 was hospitalized was always difficult. Trying not to tax family members too much and trying to train friends around you on how to care for your atypical child was always a balance.

Every person with autism has sensory struggles. Seeking and avoiding. For our son with autism, smell has always been a big deal. He loves to smell anything familiar and doesn’t like any sort of change in smell. His favorite thing to smell for YEARS was his brother. Whenever he would get stressed out, a few moments with his nose to his brother’s hand was all he needed to help regulate him. For the most part, this was ‘normal’ in our home. I’ve found that I often forget things that are normal in our home are actually not. This is pointed out when people visit. I remember family members, all well-meaning, asking why he smells things and why his brothers hand? And when will this stop? I didn’t know how to answer those questions because I didn’t know why our son did those things.

As number 2 got older, he recognized his brother’s atypical need to smell his hand. For the most part, he was accommodating. Though, sometimes he would negotiate something for himself. I let you smell my hand, you let me play with a certain toy. Often number two would be woke up in the middle of the night because his brother had a nightmare and needed to smell his hand or he couldn’t fall asleep unless he was smelling it. Yes. We did end up having to phase out the hand smelling.

Having a brother with autism may be number 2’s normal. But that doesn’t come without frustrations or without the realization that life is hard. Maybe harder for him than some of his peers.

A couple weeks ago our oldest son had a meltdown. Meltdowns have a spectrum to them, too. Some are worse than others. Sometimes when our son has a meltdown, the entire day for everyone in our home is ruined. It happens and it’s just life. This particular meltdown was rough. My husband was at a meeting, which isn’t uncommon. I had already tucked the girls in and they were, thankfully, fast asleep. Number 2 could hear and was unfortunately able to see much of this meltdown. It lasted hours, ending just after 11pm. That’s a late bedtime for a 5^th grader without piling on the emotional toll it takes to hear and see his brother’s continual struggle.

The next morning is school. I feel beat up because meltdowns are emotionally and often physically draining for parents of children with autism. But I also feel sad. Sad for my 11-year-old, who got up with far less sleep than he needed. Sad for the kid who has to and has learned how to muscle through his day regardless of what the night before looked like. I wonder if it’s worth a quick email to his teacher, but in the end, decide to let him handle his day like the mature 11-year-old he is.

Number 2 has played youth football the last three years. It’s been great for him to get out of his comfort zone and meet new people. For a few months, almost every Saturday, our family loads into our minivan and goes to a game in support of our 2^nd son. This is no small undertaking. Really, this is a big task for any family of 6, I assume. We make sure we have snacks, we make sure there are electronic devices charged. We look for the ear muffs that will cancel the most noise. All for one beloved member of our family.

We’ve gotten pretty good at managing our schedule and manipulating our environments to accommodate as best we can for our son. Some may call this enabling, we call it trying to survive, one day at a time. But nothing can prepare him for a bullhorn at a youth football game. Ironically, the same football game that our son ran the ball for the first time. A bittersweet day, an unexpected bullhorn followed by a forever memory for number 2.

We try to celebrate accomplishments for number 2. We try to praise him and reward him. And we still have to discipline him because he’s still far from perfect. He has to wrestle with why he is disciplined for behavior that his older autistic brother isn’t disciplined for. We have to teach him Romans 8:32, He who did not spare his own Son, but gave him up for us all, how will he not also with him graciously give us all things?  We have to teach him that all things includes hard things. We have to teach him that his brother is fearfully and wonderfully made and created in the image of God. We have to teach him that the parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. We have to teach him that he is to love his brother as what is laid out so poetically as 1^st Corinthians 13.

All this to say, when you see a kid sluggish at school, or maybe you see a kid who isn’t giving 100% at practice. Maybe be slow to jump to conclusions. Or when you know a kid who has a sibling with a disability, extend an extra measure of kindness to them. Be gracious. They may still be waiting for the focus to turn to them …

April

Happy Autism Awareness month everyone!

It’s strange what a mixed bag of emotions this month brings for me. Last year, I decided it was time to rip the band aid off and intentionally be more transparent about what autism looks like in our house. I think it was beneficial, if for no one else, it was beneficial for me to let every bystander know, that we already know that we can present as a hot mess. Or we can present as put together, though that is clearly not accurate and obviously way less common. 😉

This April has been an odd one for me. It’s tough to explain. We have been busy. We are a family of 6, have a couple kids in sports and are very active in our church. But it’s abnormally busy-er.

But my desire in starting a blog, was to continue transparency and show how autism impacts all areas of life for each member of our family. I didn’t forget. And I didn’t forget what a great opportunity this month is to do that very thing. It’s just taken me a week to get going. I’ve fired up the coffee pot and plan to share some more glimpses into my chaotic, blessed beyond measure, daily life.

Is there anything specifically you’d like to see? Marriage, travel, siblings, school, etc?

Let’s touch base tomorrow.

 

#thisis35

I recently turned 35. Songs from high school are now on the oldies station. I think the year 2000 was still less than ten years ago. My favorite pants are pajama pants. And my idea of a good time is going to bed early. Wow. I turned “old” in the blink of an eye. I don’t think I’ve ever wondered what 35 would be like. And, to be honest, that’s unfortunate, because 35 is awesome.

On my 35^th birthday, my son had one of his regular check-in appointments at the Seattle Autism Center with his developmental pediatrician. On this particular visit, we also had a doctor doing their fellowship and a resident. Our plan was to put the younger kids on the bus and head into Seattle. Plans sometimes don’t work, and in this case, a 2-hour school late start put a wrinkle in our plan. Thankfully, I had two friends reach out to me, knowing we had this morning appointment and ask if they could help with our other three children. #thisis35

We, my amazing husband and son, headed into Seattle a little early knowing the roads might be more winter-y than Seattleites are used to. The Seattle Autism center is a fantastic facility. They are full of resources, smiles and they have our doctor. Our doctor is kind, patient, encouraging and extremely knowledgeable. My husband tells me for the tenth? (I’m not sure, I lost count), time that he’s sorry this is how we are spending my birthday. What this handsome man doesn’t know, is that, spending my birthday with him and our son is nothing to apologize about. #thisis35

Appointments for our son are emotionally draining. We know this and we think we prepare for it, but every single time, we still feel depleted. It is sort of a check yourself moment. Check yourself. Make sure you didn’t forget that your son has a lifelong neurological and developmental disorder. Make sure that as his peers from childhood are getting their drivers licenses and preparing for high school and are dating, that you don’t forget that your son isn’t like his peers. Make sure that you haven’t forgotten, that you are still in the depths of a fight. A fight for services, supports and acceptance. #thisis35

Following our appointment, I am drained. My husband is drained. But we see that our son is drained, agitated and physically and emotionally stressed. His body language, his actual language and the way he interacts with his ipad are screaming to us that he needs a break. He needs time to attempt to gain control of himself before a meltdown begins. So, we go to the van, get buckled in and my husband and I exchange our look. The look that says, I’m tired. So, so tired. But we need to find another gear, we need to rise above because there isn’t another option. #thisis35

So, why is 35 awesome? I woke up to loads of facebook posts from friends near and far wishing me a happy birthday. Friends from my childhood, friends from my neighborhood and through every chapter of life thus far, each taking a moment to let me know they care. I had text messages from friends and family when I woke up and throughout the day. I had phone calls and I think I even had an email from my dentist, all wishing me happy birthday. #thisis35

At the age of 35, I am so thankful for each of the people that God has placed in my life. I wish that I was closer in location to so many of them, but I get to stay up to date with pictures, stories and status updates from them. I know that friendship looks different than it did 20 years ago, and I’m ok with that. Thirty-five means being thankful for small things and big things. I’m thankful for the tradition of birthday donuts. I’m thankful that our kids get so excited to celebrate someone in our family. I’m thankful for homemade cards. I’m thankful for my husband, my children, my family, my friends and my church. #thisis35

At thirty-five, I know who I am. I don’t like black coffee. I have list of foods I don’t care for. I love impromptu dance parties in my kitchen with my kids. I love learning more about Christ. I love that I’ve been given his word that I can feast on. I love the most amazing man. I have the best friends a girl could ask for. I love my family. I love each of my children. I love knowing that despite life not being perfect, life is perfectly awesome. I’m grateful for every scar and wrinkle, though those could slow down … ahem … because they tell a story. A story of God’s goodness in my life. Guys, 35 is pretty great. #thisis35

God is good in Autism

Originally written May 2017

The room was tiny. Not like a doctor’s office, but more like a small office. A desk, a few chairs and some odds and ends toys. We were called into the room by the speech pathologist who had just finished compiling all the information. Information from the day and information on the previous 11 years, 11 months and 20 some odd days since the moment our baby boy was born. M had just completed the ADOS test. The autism diagnostic observation schedule is a tool used to test for autism. The lady was nice. She was good with our son and she had a very kind demeanor. She isn’t able to officially diagnose. Autism spectrum disorder (ASD) isn’t easy to diagnose. There are very few people (occupations) that can diagnose because of the complexity of the disorder.

I felt heavy. Sounds weird, I know. But it felt like I had bricks on my shoulders. We were given our “Welcome to autism packet” along with other resources and with a sympathetic smile, we were sent on our way. We left Seattle Children’s hospital that day with the same boy. The one who always kept us on our toes. The one who didn’t allow us to be on anything other than our ‘A game’ as parents. The one who I had prayed years that God would bless us with. The hilarious, often difficult, artistic, animal loving, rigid thinking, things are black and white, boy.

We got into the car, buckled our seatbelts, answered his questions of if he did ok. I think he picked up on our emotions, despite how hard we were trying to keep them hidden. Paul turned the car on. And a song came on that ministered heavy to me. I am a pastor’s wife. I know that there are many preconceived ideas that come along with that title. I enjoy some Christian music, not all. But the majority of time, it’s not what is played in my mom-van. But God knew I needed to listen to a song that I had previously heard. This time, it was just heard differently.

The lyrics cut deep. Letting go of every single dream, I lay each one down at your feet, Every moment of my wandering, Never changes what you see. When you don’t move the mountains I’m needing you to move, When you don’t part the waters, I wish I could walk through, When you don’t give the answers, As I cry out to you, I will trust, I will trust in you. The tears fell. Silently. But they were heavy. M was behind me in the back seat. Oblivious to the weighty emotion that I was trying my best not to give into. I looked over at my husband. I don’t know how to accurately describe my husband to people who don’t know him. He is a complete and total rockstar. He is amazing. He has faults, he’s the first to admit, but he truly is the best. His eyes were full of tears. YOU HAVE GOT TO BE KIDDING ME, I thought. Visibly seeing his emotion, meant that any hope I had of gaining control of myself was tossed out the window.

Ready or not, wanted or not, we were now a part of the parents of an autistic child club. I struggle with how to communicate all the emotions we felt. I knew that this would be a rollercoaster. I just assumed that it would stop. Or slow down. And maybe, eventually it will. Our son’s official diagnosis followed a few weeks after the day I described. We are 6+ months post diagnosis. Here is a list of some of the things I’ve learned in that six months.

1. Our son is truly amazing. He, like each of our children, was created in the image of God and for a purpose. He struggles so hard with everyday tasks, things that come as easy as breathing to me, take a tremendous amount of strength for him. Some days he’s able to do better than others. But all those years where I thought he was just being difficult, I understand more now.
2. We have an incredible support system. What I left out in the day I described above, was the texts that I received from friends. I have a couple friends who check in with me to see how I’m doing on a regular basis. I have the freedom in those relationships to talk as much as I want about autism or to say nothing at all. Our family loves M. There are people in our family who celebrate M’s victories just as hard as we do as his parents. They see him. They love him. Our church. I really should say churches. Plural. We’ve been so blessed to be a part of a couple churches who have saw difficulties that M has had. And they roll up their sleeves and walk along beside him and us. They pray for him. And they pray for us. I am so thankful for the people God has placed in our lives. It is lonely and often isolating when you have a child with a disability. It is difficult for people to truly understand, but we have a tribe of people who try to understand and even if they can’t, the love us regardless.
3. Nothing really changes. I thought that when we got the official diagnosis. When he was given the ASD diagnosis, people would understand more. They would see that he wasn’t trying to be difficult when he was scrambling to get away from smells he doesn’t like. Or when he shuts down from sensory overload. But we still have to fight. That isn’t going away. People still have preconceived, uneducated opinions about him and his ability level or even the diagnosis itself. Some days when I run into those people, I am patient. Other days, it takes every ounce of effort not to throat punch them. To be fair to them, they don’t know. They have no idea what our life looks like. What kind of systems our family has in place in order to help him get through his day. Or what happens when he just can’t function. They don’t know the depth of our struggles over his entire life. And it’s unfair for me to think they should. I just hope that people can as a whole, be a little more compassionate, not to me, but to him.
4. I really do have to trust. I 100% believe that God is good. I don’t know why M has autism. I don’t know why I don’t. Or why our other children don’t have it, too. Or even why he has the ability to speak. Or why he can present well on some days and not on others. I truly have zero control over autism and it makes me crazy. It highlights my inability to make life for my children look the way I think it should look as their mom. M knows that he autism. But he doesn’t know why and he wants to know. He tries to come up with a reason. But there isn’t one. Trusting God with my children is difficult, though that’s really dumb considering that he loves them far more than I can even fathom. I don’t have parenting figured out. Not even kind of. Not for any of my children. On difficult days, which sadly, is pretty much daily, I have to get my strength from Christ, because I am exhausted. Overwhelmed. Unqualified.
5. Counting my blessings. I am so thankful that in the midst of hard days, weeks, months or even years, God has given me the ability to see past whatever struggle I am having and see glimpses of how he is working things to my good. Some days this is easier than others, but it’s still there. Our daily goal is for God to be glorified. For him to be made much of. I don’t know why M has autism. But I know that God is glorified in it. I know that in the nitty gritty details of our lives, God is there. I know that in the big moments of our life, God is there, too. I know that in the moment where we are given our back stage passes to the autism club, God is there. He is there and he is reminding me that I need to lay down all of these dreams I had for M and each of our children at his feet. In the moments that I am wondering what is going on, what the future holds, HE knows. I can’t move mountains. I can’t take away the way the air smells. I can’t take away crowds from places. I can’t take away loud noises or bright lights. Or magically make my son aware of how to behave socially or have the ability to read social cues. But I can wake up each day and trust that God is good. He loves my son. My autistic son. The son that he knit together in my womb. And I love him, too.