A letter to my son on his 4th birthday

My love, I can’t believe today you turn four! Sometimes it seems like we have lived two lifetimes in just these four years. So many lessons learned, so many fights fought, so many tears shed, and twice as many laughs had.

There is no doubt becoming a parent changes you. There is no question becoming a special needs parent changes everything. I am not the person I used to be before you came into our lives. And although at times I’m still trying to figure out who that is, I know I am a much better person because of you. You are amazing, and you are perfect, and we would choose you a million times over again my son!

Thank you for so much joy, and so much love and for all of these life lessons:

I’ve learned that mother’s intuition is the real deal. Always listen to it.

I’ve learned that not all children learn the same way. Some need to be taught to sit, to attend, to play, even to communicate.

I’ve learned that some kids are on their own timeline. And that some milestones never come for some.

I’ve learned that even if you need all the help, that help is not always freely given.

I’ve learned that sometimes you have to fight for everything. Fight for appointments, for services, for insurance coverage, for school placements, even for your given right to be in this world with everyone else.

I’ve learned that the world is not as kind as it should be to those who need it most.

I’ve learned that we are strong beyond what we believe, and that we can overcome even the things we fear the most.

I’ve learned that there is reason to celebrate each day in the smallest of things.

I’ve learned that the mightiest fighters, are often the smallest ones.

I’ve learned the true meaning of acceptance, patience, empathy and compassion.

I’ve learned that no one, no one, can set limits on you or your achievements.

I’ve learned that love can truly conquer all.

And that love needs no words.

Today I honor you and our beautiful journey together, my angel. Happy birthday! Love you to the moon!

Our winding road back to preschool.

My son, two years ago you were about to make your official preschool debut. You were almost 22 months. I was so happy to have finally gotten you into your sister’s school. I had been begging for a spot since you were 15 months. I felt you badly needed to be in that environment with other children, I guess I already had a hunch.

This was going to be so great! You would be with your sister all day, she could walk you to your room, watch over you on the playground, and help you on your school journey. It was a happy time, but also a challenging one. You had just started speech and occupational therapy a few months before. I was struggling. It was becoming clearer and clearer that we were dealing with more than just delays.

The school year started and things were going well for you. You were quiet and calm back then. Yes, you were learning at a different pace than the other children and you required more support and redirection, but you were sweet and easy (you still are!). Things were not so well with me then. I worried so much asking daily about your progress. Were you playing with toys? With the other kids? Were you participating in all the activities? Sitting at circle time? Were you saying any words? Pointing?

And then a few months in, we had the diagnosis. Two weeks after your second birthday. A diagnosis I knew was coming six months before. And then our plans to have you in school with your sister began to change. We took you out for two months to do an intensive therapy program. After you came back, you were taken in and out for therapy in the mornings and afternoons were set aside for more therapy. We did everything we could to keep you in that setting, but you weren’t ready for it then.

After that year, it became more difficult to find the right educational setting for you. And although it wasn’t our first choice, we stuck to just therapies. But we had a goal to get you back into school. And after many ups and downs, we were able to get placement in a great inclusion program and a wonderful school. And here we are, a couple of weeks from going back to pre-k. If this works for you, you will have some stability in your schedule for the next two years. Stability. Something we haven’t really had since your diagnosis.

What we have learned since your diagnosis is that a lot of this is trial and error, and we won’t know what is going to work for you until we try. But I am so scared my love. I worry if this is the right place for you to thrive. I wonder if you are ready for this. I worry whether they will be able to give you the right support? I wonder if you will like it. I worry that if you have a bad day, or someone is mean to you, you will not be able to tell us. I wonder if you will be safe and happy. I worry about so much.

But we are also so very excited for you. We are excited about the possibilities. We are excited to see what you are able to do when you are allowed to flourish without so much structure. We are excited for progress, and new friendships, and school activities and so much more. We are hopeful. This is a new beginning for us after a winding road. But if we find that you are not quite ready to be there yet, then we’ll go back to the drawing board and make another plan. But regardless of how this turns out, please know how much we love you and how incredibly proud we are of you and all the hard work you have done just to get back here.

The Road Ahead

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People always ask me how Lucas is doing, and if he’s doing “better”. I guess the answer is that yes there is usually progress, albeit in our world progress is slow and not always steady. He has improved in many areas since starting therapy two years ago, and we are so thankful for that, he has worked so very hard just to get to where he is today. And yet, we still have a long way to go.

What I’ve learned about autism is that although there may be progress, there are constantly new issues emerging which need to be addressed. This isn’t a straight road we are travelling on, it comes with set backs, obstacles, detours, etc. So the answer to the question usually depends on where we find ourselves at that exact moment in time.

There are also so many things we are working on at any given time. Speech and communication, socialization, appropriate play, fine motor, gross motor, behaviors. Each one with many distinct and separate skills that we hope are learned and mastered. Sometimes it feels like we are working on everything. Probably because we ARE indeed working on everything. So is he doing “better”? For sure in some areas he is, others are still very much a work in progress.

We seem to be in a good place right now, although I probably just jinxed us by saying that! At least some things seem to be falling into place. We have our services more or less figured out (for now) and Lucas is starting an inclusion pre-k program next month (yay!). But that is not to say we aren’t struggling in other areas. And once we figure those out, IF we figure those out, we’ll move on to the next thing on the road. Because there is always a next thing.

And by the way, even though it may be a hard and complicated question to answer, please don’t stop asking me how Lucas is doing, don’t ever stop asking.

Moving Forward

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I was really hoping I could get this page going for autism awareness month, but there was just too much going on and I lost momentum. But, I did do a lot of thinking. This was our second autism awareness month with a diagnosis. But it was much different than the first. I have learned a lot in the last year about the divides in the autism community. And it is never so evident nor so confusing as it is during autism awareness month. I questioned myself a lot. But ultimately, I am just trying to figure this out, and do what’s best by my kids and my family. I may mess up or some may not agree with me, but I’m going to keep doing me. What this community really needs is to stick together!

I have also been figuring out what I want out of this page, and how I want to tell our story. So many parts of this journey are hard. It can be so heartbreaking to see our children struggle. And I absolutely want to talk about the hard parts, but I don’t want that to be the theme of this page. That is not how I want to tell our story. I want to educate and be positive and provide hope. And I realized while pondering all of this, that it was all just a metaphor for my own journey. I’ve been on a roller coaster of emotions these past two years. And I’ve been down a lot. I’ve mourned. At times, I’ve been paralyzed by fear of the unknown. But our story is not a sad story, it’s not a tragedy. And there is beauty in it. Yes, some parts are tough. But this is our life and we must make the best of it. We must change our perspective to persevere. So, moving forward, I’m going to try to see the bright side a little more and hopefully share that with you. And in the moments I lose sight of that, I am human after all, you all will be here to remind me of that!

We Know Too Much

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Truth is, I’ve been struggling lately. It’s the roller coaster that is this journey. Sometimes you are up so high, and then just like that, you come way down low. The smallest things can get you down. Sometimes when you least expect it. Or maybe it’s the weight of the really big things you carry around with you but suppress on a daily basis.

Maybe I took a preschool tour for the baby and peeked into the three year old classroom thinking I could handle it. I couldn’t. I’m so used to my three year old, I sometimes forget what typical three looks like. And it is very different from where we are right now. A reminder of the gap we are trying to overcome, which just seems to be getting wider.

Or maybe the baby seems more quiet than his siblings at this age. And I start getting nervous. Because this is a big year for him. By year end he will be Lucas’ age when we realized he was developing differently. When our life began to change with the realization that an autism diagnosis was looming right around the corner. And as I share with a fellow autism mom my concerns, and I say I wish we didn’t have to worry about these things, she tells me: “we know too much”. And we do.

We know too much. And that is one of the hardest parts about this journey. We know what it is like to loose that sense of security that everything is going to be alright. That feeling when most things have always gone your way, or not, but worked out one way or another. Because now we know first hand that sometimes things turn out differently and they will never again be the way they are today. We know that things we never planned of, or thought of, can happen to us. Serious things. Life changing things. And we are scared. All the time. Because things could be much worse. And we know this. We could get another diagnosis. Or a regression. A plateau. Or worse. We could loose skills, or speech, or never gain it at all. Or this could happen again. To us. To another one of our sweet babies. And we feel we could not possibly handle that. The worry. The heartbreak. The unknown. And yet, here we are again, in familiar territory. And why you ask? Because we know too much.

Why I Chose to Write

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I have been thinking of writing about our journey since before Lucas’ diagnosis. There are so many emotions that go into parenting a child that is not developing typically. Looking back at the beginning, when I first started to worry about Lucas, what I mostly felt was fear. Fear that his delays would turn out to be something serious, something permanent, something like autism. I obsessed about everything he did or didn’t do, and would try to talk to those around me about it. But no one really saw what I saw at that point, and it was a very lonely place. I wanted to write for myself mostly to process my feelings and my emotions. Writing things out is cathartic and I needed an outlet for these thoughts and worries that were consuming me, eating me up alive.

Then, as we began to come to terms with the diagnosis, I wanted to write openly for anyone willing to listen. I found myself reading other blogs and identifying wholly with them, finally feeling like we were not alone on this journey. I would send my friends and family these blog posts so they could imagine what I was feeling, what we were going through, without having to say it myself. Because it was hard, it still is hard to talk about all of this.

So I decided to start this blog to tell our story. A story that is different and yet so similar to many others. I wanted those who know me to hear it from me, in my own words. Because I am not the same person I was before my son’s diagnosis. I am forever changed by this experience.

I hope that other parents going through something similar with their children can relate to my writing and connect by sharing in the joys and challenges of raising a child with unique abilities. And for those that will never understand what we are going through, but want to learn more about it, I hope that by opening up our lives we can raise awareness and greater acceptance for our children.

But now, I mostly want to write for him. For my son Lucas. Because he is the center of my universe and I want the world to know how hard he works, how proud we are of him, and how loved, and beautiful and special he is.