I have this really great habit of taking months off of writing anything on this blog and then I will have a moment where I just have to get something out of my head and heart.
These past two weeks has been one of those times.
As many of you know, Louie was diagnosed with Autism Spectrum Disorder in February of this year. But the whole process started almost 6 months ago back in November. I'm not going to go into that whole story and the journey we have been walking through, but as I have traveled through the process since then I have realized a few things.
Basically I had a hard time with spring break and navigating having both kids, one with special needs, and trying to engage and entertain them while also keeping up with laundry, feeding them, general household upkeep, and keeping my sanity. Noelle is pretty easy in general, but if she doesn't have the attention that any normal 5 year old needs, it can wear on her and it becomes more difficult. And then of course Louie needs my attention in ways that I have never experienced with Noelle, and his needs usually trump hers. Louie is only in school about 9 hours a week, but those hours are so helpful for me as a mom - to have a breather, to get household work done, and sometimes to just rest for a minute. It's fine when there is a school break - but the summer break looming ahead made me feel pretty exhausted and overwhelmed (and it's not even summer break yet!)
I was frustrated, scared, and probably feeling a little lonely in the anxiety of it. I actually love summer. I love pool time and playing outside. I like lazy mornings and doing fun things just because it is a care free time of year. But I also know that it's not quite as easy with Louie as it was with Noelle. It takes more effort and sometimes you think something is going to be so fun for everyone and you realize that it is actually a disaster and you need to pack up and leave whatever you had thought was going to be so much fun.
I'm getting off on a tangent here a bit...but what I am trying to say is that sometimes you just realize that it IS hard. That it's not just simple and predictable and that children on the spectrum are referred to as "special needs" kids because they have alot of needs that are particularly special. It requires more from those caring for them...duh, right?!
From the time that it was suggested Louie was on the spectrum to the day he was diagnosed was about 3 months. I spent so much energy trying to figure out for myself if he was or wasn't autistic. Oh the many many google searches I did.... but the day he was diagnosed, it was just like all that mental work to understand and see what was going on with him just clicked into place. It wasn't that I had to process what this meant for him or for us - it was just like, "OK. Well here is our reality so let's just move along now."
Don't get me wrong, I am constantly learning and reading and researching all kinds of things about this diagnosis. There is SO much out there. But I'm not trying to figure out why - I mean there are really talented scientists that have yet to figure out why any child happens to get this disorder, who am I to even attempt to figure out why Louie has it?
Most of the time I am doing really good. I'm learning how to help Louie, I'm learning how to work with him, and show him how to thrive in different environments. He was challenging before we knew what was going on and he is challenging now that we do know what is going on - but at least now we have help and we have resources to know how to move forward. But these past couple of weeks, I wasn't good. It was just hard.
Sometimes the future scares me. I may see a character on a show or movie that is portraying autism or I see a teenager coming into therapy the same time I am dropping Louie off. And then I want to know how long certain things will be a struggle for him, I want to know if he will have a hard time connecting with other people or to make friends. I wanted to know if he will be good at giving eye contact to new people he meets. I want to know if he will have behavioral issues we have to navigate, or if he might potentially be a harm to himself or to others someday. I want to know if he will always be obsessed with monster trucks. Heck, we are just two weeks out from his school evaluation, and I want to know if he will qualify for the special needs program, or if he will still be able to start kindergarten on time. I want to know if he will be able to have a job someday or a family and children of his own. But I can't know all those answers. And nobody can tell me. No doctor, no therapist, no scientist. The saying is, if you have met one child on the spectrum you have met one child on the spectrum. No two are the same. No path is guaranteed to go to the same end.
Sounds so...unknown...doesn't it?
News flash: All of life is unknown.
I don't know if Noelle will always love purple and pink. I don't know if her eyes are going to stay blue or if one day they will just look way more green (which is what happened to me as a kid). I don't know if she is going to be picked on in school or if she is going to be one of the girls who gets labeled popular and might have a tendency to make other kids feel excluded. I don't know if she will ever be brave enough to ride her bike without training wheels. I don't know if she will ever be ok with dipping her chicken nuggets in a sauce for crying out loud. The girl wants everything plain, lol. I don't know if she will want to go to her high school prom and I don't even know if she will want to go to college.
These might sound like lesser unknowns compared to Louie's. But the fact remains that they are unknowns. We never know where our journeys will take us. Nothing is guaranteed. It's easy to get caught up in "what ifs" but if we do that we miss the here and now.
We are finishing up Present Over Perfect by Shauna Niequist for our small group this spring. I've really enjoyed it and it's made me think about alot in my life. Many of the things she talks about I have already walked through and found freedom from. But she talks specifically about being present for the things in our life NOW. And so that is one thing that I am greatly trying to focus on.
I don't know alot about who Noelle will be, but I know that right now she loves desserts, art, pokemon cards, and dolls. And I want to celebrate that about her and enjoy the last month of her being 5.
I don't know if Louie will have a more specific diagnosis than ASD or what level he might have of it, but I know he loves to snuggle me and ask me "Hey mama, whatcha doin?" I know that he loves singing his ABC's on repeat and watching monster trucks do the same tricks over and over again. He loves swinging and jumping and bubbles and finding every possible puddle to jump in. He takes so long to fall asleep but is so angelic and snuggly once he finally drifts off. So I will remember to delight in my little boy being 2.
Fear can try to cut in on you and overwhelm you with what the future could hold, and I will be the first to admit that this journey of parenthood and autism has my knees shaking from time to time. But I can decide to reject the fear, enjoy life as it is right now, and choose to remember that God chose me to be mom to Noelle and Louie. He knew that I was the mother they needed and that I also needed these specific babies with all their wonderful different traits.
I know I won't remember this every second of every day, but I know that I can try.
