Category Archives: Questioning

You Don’t have to be Perfect

Writer’s Note: this post talks freely about my Christian faith, of which I am proud. I understand that you might not share my faith, so please don’t take this as a ‘call’ to evangelize. This is, instead, a hard look at what being a special needs parent does deep inside, when we can’t let go of the mistakes we’ve made in life.  –Katrina

Kat's Curiosity - A Look at FaithFaith in Our Parenting

This isn’t a kind of faith that comes easy when you have kids with special needs.

Our worlds are filled with so many doubts and what-ifs already, that in the face of a new diagnosis, or even an older one, we sometimes feel like we made too many mistakes. We hurt, deep inside, because of pain we inflict on ourselves.

I’m not a therapist; I’m just a mom. While it’s hard to sometimes step above the ease of self-recrimination, it has to happen to move forward, to be the strong parent your kids need. One of the hardest things I had to do as I made peace with one diagnosis or another over the years was remind myself that  I am not perfect. I am only human. I will try my hardest, fight with passion and vigor for these very unique little guys. But sometimes I will make mistakes along the way.

  • Sometimes I will yell after a long day and one too many questions.
  • Sometimes I will look away instead of engage my child in the world around them, especially when my repeated efforts don’t always show the results I want, or I need.
  • Sometimes I will feel overwhelmed. Frightened.
  • Occasionally, I will feel my kids don’t need me, that I am not good enough or wise enough to be what they need.
  • Sometimes I will cry. And I will break.

I should stress, this is an ongoing process. Becoming a special needs parent is one of the few things that occurs in one split second, forever changes who you are as a person and who you will become, and takes a lifetime to master.

Not always, but sometimes, I resent God. Usually I am in awe of these little boys and so grateful to have them with me, to have been entrusted to raise and protect them.

Sometimes, in the dead of night after a day filled with one too many seizures, when one of my guys questions this world of strangers who would rather ignore them than interact with them, or when the next diagnosis is one too many.

Sometimes, I am overwhelmed. I am shamed. Guilty. Convinced that feeling this way somehow mitigates the years I have spent championing for these guys, facing those seizures, giving my youngest CPR, or otherwise being there for them.

It doesn’t.

But I’m human. I make mistakes and I misunderstand and I feel–in a world better suited to someone who isn’t already a little bruised from a life well-lived.

In these moment, I turn to my faith. Not in myself, because I will never be perfect, or good enough. I will always find fault with myself and my parenting. My faith, instead comes from my deeper faith, the relationship I have with God. I realize that this is the moment I lose some of you. You don’t believe in God. He let you down. He let this happen.

What strengthens me–because I think the same thoughts sometimes–but what strengthens me, is that His shoulders are broad enough to be weighed down with my pain, my anger, my lack of faith, even. I’m not asking you to share my faith. I understand this is beyond many of you, either because of the weight of living or for other, perhaps more personal, reasons.

But this is a post about me. And sometimes, I need to remind myself why I have the faith I do. Why my faith has been my constant companion during the valleys, and during the celebrations. I won’t ask you to share my faith, but I hope you would understand what it means to me.

One of my favorite new bands, Tenth Avenue North, released a song recently called You Are More and I consider, as I listen, that the lists of all the mistakes people have made is populated by all the mistakes I have made, real and imagined. I invite you to share the video with me, since they have offered it freely on YouTube.

Take a moment for yourself today, and remind yourself, that you are more than the total of your past mistakes. Share my faith or don’t, but please don’t stay steeped in a past you can’t change.

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Filed under Celebrations, Family, Parenting, Questioning, Special Needs

Ya’ Think? ‘Child With Autism May Affect Family Income’

Child With Autism May Affect Family Income.

This is the headline from many different sites from the past couple of days. Don’t get me wrong, I think it’s great that they are studying how poor we all are. Wait. That sounded bad. But really, was there really any doubt?

The staggering effects of having one child with autism go far beyond finances and stress-loads. It’s a socio-economic crisis as more and more children are being diagnosed. How many families are like ours, with two or even three children on the spectrum? Out of those diagnosed, how many are severely autistic, requiring more interventions, therapies, household costs, additional budgetary concerns, and the list goes on.

I recognize the importance of researchers needing verifiable data upon which to base further research. I do. How about we consider their statistics and compare them with the National averages? Hm. I guess that’s something I could do.

But then again, I have three little guys who are autistic. I have more important things to do than verify how dismally my income compares with National averages, much less how many of my peers are in the trenches with me — tired, poor, and maybe just a little overwhelmed.

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Filed under Advocacy, Autism, Family, Parenting, Questioning, Research, Special Needs, venting

Do I Have to Answer that Question?

Bobby's Smile

Bobby has never met a question not worth asking again. And again.

The anatomy of a Question

My oldest child, Bobby, is one of those kids who must question everything.

Why do I have to go to bed?

What happens if I don’t go to bed?

What happens if I go to bed and I have to get up?

Why do I have to go to bed?

His eyes are brown, but look almost pale blue because of the scarring on his corneas due to Rieger Syndrome, a rare disorder he happens to have. When he thinks about the world around him and when he sometimes asks his questions, his eyes scrunch up and twinkle, and he will even, fleetingly, glance at our face if he’s very interested in our reaction.

Will you read this to me?

Will you read this to me now?

When will you read this to me?

Will you read this to me?

He’s always interested in not just our reaction, but in how we react. He’s become a miniature expert in reading body language when it comes to those he deals with on a regular basis. He can tell when something he’s asking is frustrating us, amusing us, or even if it stumps us.  And he will adjust his questioning accordingly.

Bobby: Do I have to get dressed?

Mom: (who really needs her coffee): Do you want to go to school?

Bobby: Yes. Do I have to get dressed?

Mom: If you want to go to school then yes, you have to get dressed.

Bobby (with a sideways glance and fleeting grin): But I have to go to school.

Mom: Then you should get dressed.

Bobby (grin in full force): Do I have to get dressed?

Bobby is curious and autistic. Repeating the question is–for some reason–reassuring to him. When he’s assured of the answer, or seems to know what our answer will be, he’s free to be amused, sometimes quite amused, at our expense, since he knows his endless questions try even our best attempts at patience.

While we are still working on helping him cope with this little obsession (and trying to stay sane), he sometimes surprises us with the questions or comments he shares in diligent, thoughtful, and mischievous ways.

I’m reminded of a story his teacher told me. This isn’t exact recall (I have slept a few times since then).

Teacher: Well, I have a little bit of a funny.

Mom: … ?

Teacher: He was asking what was going to be for lunch and I told him. And he asked again. Well, I turned it back into a question. Or I tried. It didn’t work. He kept asking.

Mom: Surprise.

Teacher: Yeah. [laughs]. So we came up with a new rule that once he’s asked the question, if we’ve answered it then he doesn’t get to ask it again.

Mom: And how’s that working for you?

Teacher: Well, he was asking about what was for lunch today, and when I reminded him that he already knew that answer he thought for a minute and then asked: “What’s for lunch tomorrow?”

I remember thinking that was so Bobby and such a testament to how much thinking goes on in that head of his. But that brings me to the second part of this post.

Thinking Beyond Today

Bobby’s obvious way to work around not being able to ask the question he wanted was to ask the next one.  I wonder, what if, like Bobby, we were told that we couldn’t ask that question yet again. You know the one. We’ve all asked our own version of it.

Why?

What did I do?

Why us?

Why my child?

Did I [insert whatever popular idea is making the rounds at the time]?

What if, like Bobby, we were told that we had already asked that question.

Well, I never really got an answer, you say. Sometimes, the rules of life aren’t fair. We aren’t given answers to the questions that plague us, regardless of how often, in how many different ways, or however plaintively, pleadingly, we ask for the answer this time.

I do believe in God, and there are platitudes I could answer with right now, that other Christians have offered me during the years. These pseudo-answers to the questions we ask so earnestly do nothing to dampen our zeal for that need to know. I can say what I do believe, is that everything works out according to His will. Not that I particularly agree with His will. In fact, if He’s asking, I have a few suggestions.

But either He’s not listening or His answer is lost in translation. In any case, I don’t receive those answers that would make it all okay, that explain it all and make the world right again. It doesn’t mean that my belief is any less if I just say that in this regard I struggle. And I still have questions. Sometimes the same questions. Sometimes many times over.

In this respect either I am very much like Bobby, or maybe he is very much like me.

Bobby was told he couldn’t ask that question again, so he just asked a different one, one that he knew he would get an answer to. And for him, at least, that solved the dilemma, until it was time to ask the question again. For Bobby, the echolalia and the OCD tendencies that are part of his autism are behind the questions, and are part of what makes him unique.

I, however, while sometimes slightly insane, am not autistic. I ask questions as a part of the process. That process is part of having three kids with varying disorders, disabilities, abilities. I want to understand their thoughts, their dreams. And when they can’t tell me what they’re thinking, I still want to be able to understand them. If, like Logan, their speech is stuck somewhere in at best a different or damaged brain, I still want to understand. And part of the understanding comes from questioning.

Sometimes, in life, we ask the same questions over and over. And we never get an answer.

But sometimes, if we look outside the spoken word and instead at actions and emotions and intent, sometimes we receive answers we didn’t know we were looking for. Logan can’t speak, but when he suddenly comes up and grants one of us a powerful leg hug (he wraps his small arms around our legs and hugs for all he’s worth), he tells us that for that moment he is happy.

I can ask the question Why?  and never receive an answer, but when I look at these three beautiful boys, I have to wonder if they aren’t the answer to the question.

Instead of Why? maybe I can ask Why not? or even Who else?

It sometimes isn’t the answers that we are seeking in the repeated questioning, but the right to simply ask them. And if we aren’t allowed that questioning, or if, like Bobby, we’re told that we already asked that question, then we either have to ask a different question, or look for the answers in a different way.

Kat

What questions keep you up late at night? What questions have you asked yourself so many times you lost count long ago? 

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Filed under Family, Parenting, Questioning, Special Needs, Things Kids Do