The Beginning

Here I go…
I’ve been wanting to do this for a long time. However, I’m about as technically savvy as our hamster, so it’s a pretty daunting task to set up a blog! We have four beautiful kids who I am writing this for and about, and I hope this is a way we can keep family and friends up to date on the laughter, tears, milestones, and joyful chaos that we call “our life”.

I always wanted four kids, a big family. Alex said he wanted three, and then we’d see. I thought it would be incredible to have a big, boisterous, joyful, chaotic, loving family. I wanted kids all around, toys spread throughout the house for me to constantly step on, someone always yelling “MOMMY!!!”, and love love love. I knew my heart would grow and grow with each new baby, and the love we would have in our family would keep us strong through any obstacles life threw at us. Little did I know.

We did have four kids. A big, crazy family. I’m always stepping on toys, there’s always someone needing me, there’s always a tushy that needs wiping, and there are always kids around– sometimes ours, sometimes ours + friends. And there is always love love love. Our big love has kept our big family together and strong through 12 years of marriage and 10 years of ups and downs with our kids. It’s gotten us through terrifying, dark moments. And our love has been part of our celebration when we have golden, perfect moments.

A little background to catch you up to speed: We have twin boys who are 9, Jonah and Ben. Jonah is four minutes older than Ben, he will have you know. They were born at 29 weeks, and have had to overcome many obstacles due to their prematurity. We’ll talk about that a different day. The boys have both been diagnosed with Sensory Processing Disorder, Tourette Syndrome, ADHD, Bipolar Disorder, Dysgraphia, and anxiety. We have had years and years of therapies- occupational therapy, physical therapy, counseling, developmental therapy…and we are beginning to really see the benefits from all those hours of therapy. The boys are sweet, engaging, hilarious, smart, brave, creative, and kind. They also happen to have some special needs.

Aidan is 6. His name means “little fire”, which we thought fit his personality even when I was pregnant with him. He is a feisty little guy. He was born at 33 weeks with jet black, smooth, straight hair. All that smooth hair fell out and grew back blond and spiky, as if it knew it had to complement Aidan’s spunky personality. Aidan makes friends wherever he goes. He is bright, sensitive, full of energy, thoughtful, loyal, creative, and funny, and his smile lights up a room. He also has some special needs and has had years of therapy to address those needs. Right now he gets weekly OT and speech.

Ella is 2. “Ella” means “complete”, and also “fairy princess”, which both suit her perfectly. She is the girliest girl you will ever meet, all tutu’s and pink. She has completed our family in a way we only ever dreamed was possible. Ella is affectionate, passionate, intuitive, kind, and playful. She was born 7 weeks early, and…you guessed it, is just going through the process of beginning therapy to address some special needs that are popping up. She is getting physical therapy to help her with some muscle/strength deficits, and occupational therapy to address her sensory issues.

This past week, Aidan was officially diagnosed with ADHD and Ella started therapy- OT and PT. A double whammy for Mama. Aidan already has the diagnosis of Tourette Syndrome, Sensory Processing Disorder, and some speech issues. It was a momentous week at our house.




We go through times where things are even keel, the kids are healthy and their behavior is manageable. Then there are times that are painful and difficult to get through. This week was a hard one. Even though we’ve been through the whole process with Ben and Jonah– the diagnosing, the medication trials, the doctor’s appointments, the neuropsychological testing- it does not get easier. As I drove to the psychiatrist appointment for Aidan this week, I was surprised that I was feeling as sad and anxious as I was. I knew what he would be diagnosed with, I knew what the psychiatrist would say. But I was still dreading it. Dreading the whole thing. Dreading the ‘officialness’ of it. Of what it means for Aidan, the meds he will have to try that might have side effects, the testing, the psychiatrist appointments, rallying his team of therapists to have support for a special ed plan at school, going through that whole process with the school…whew. I’m tired just thinking about it. I felt, driving to the psychiatrist that day, the same way I feel every time I have to go to the dentist (which I have a huge phobia about), I just want to run away. I tell Alex this EVERY time I have to go to the dentist- let’s just run away!! I want to leave and forget about this and just not do this. So I cranked up my music, and tried to sing away my blues, and force myself to drive the miles to the psychiatrist’s office. My blues didn’t disappear, but I did make it to the doctor’s office. Where yes, Aidan was officially diagnosed with ADHD. On top of Tourette’s. And whatever language disorders he has that we haven’t quite figured out yet. 

Ella is always jealous of her brothers, because they get to go play with the fun therapists at our clinic, The Therapy Tree. She always has to wait for them in the waiting room. We’re there a lot every week, so she really gets sick of waiting. She was thrilled this week when a therapist came to get HER to play!! It was bittersweet for me, watching her bop down the hallway, piggy tails happily bouncing, side by side with her physical therapist. I felt sad because this is another milestone- another one of our kids needs therapy. But I also felt so hopeful, because I know what this therapy has done for my other kids. The therapists who work with our boys are angels sent straight from heaven and put on this earth specifically to touch our family’s lives. I’m convinced of this. They have changed our lives so drastically in so many ways, I don’t have words big enough to thank them. Every single week, they show up, they’re happy to see our family, they are full of ideas for how to make our lives better, how to strengthen muscles, how to calm rages, how to brush teeth…they are amazing and we are so blessed to have them in our lives. So I know what Ella is in for– hope. Although it’s sort of a sad thing to have to need therapy, it also makes Ella’s future so hopeful. And she was right to dance down that hallway with her new therapist. This therapy thing is something to dance about.

When you have kids with special needs, you obviously hope your other kids won’t have any ‘special’ issues. And when they do, it just makes you sad. Just sad. For how hard their life is and shouldn’t have to be. So whenever I’ve faced struggles like these with my kids, I let myself grieve and mourn. I cry if I need to, I let the sadness take over for a little while. I wonder why my child has to struggle. Why life has to be harder for him than it should be. All the while knowing that through my sadness I will fight like hell to make sure my child has everything he could possibly need to make his life easier, better, safer, more enjoyable. I let my soul cry for as long as it needs to, and then I stand up and fight for my kids with every fiber in my being. I’ve learned that you can fight and advocate even when your heart is broken and your soul is crying. You might be fighting with tears rolling down your cheeks, but you’re still there, standing up for your sweet babies like no one else can.

Four incredibly brave, resilient children. Four kids who have special needs. It’s a daily adventure, and it’s always joyfully chaotic at our house.

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About carnewsom

I am a stay-home Mama of four beautiful kids. Our twins are about to turn 10, and both boys have been diagnosed with SPD, Tourette Syndrome, ADHD, anxiety, dysgraphia, OCD, and Bipolar Disorder. My 6 year old son has ADHD, Tourettes, SPD, anxiety, and OCD. He also has some speech and processing issues that haven't been fully diagnosed yet. My daughter will soon be 3, and has SPD, as well as fine and gross motor delays. In another life, I was a social worker. Now I use all those good ol' social worker skills to be the best advocate I can be for my kids. It can be chaotic in our family, but the chaos makes us cherish each joyful moment even more.

    Comments

  • Heather


    Blessings to you, you are an awesome momma! My oldest has SPD, and possibly high functioning Autism….I am also thinking my younger kiddo has SPD too…Right now we can’t afford any more therapy…so I do therapy with him and pray.

    • Carrie


      I know how hard it is to realize more of your kids need therapy, and yet it’s so expensive!! I’m in awe of you, being able to do therapy on your own with your littler one. That’s amazing!!

  • Julie


    Your last paragrah said it all for me today. I have one child with SPD. If he has anything else, that remains to be seen; and I worry, daily, about whether or not our not-quite-one year old will have any special needs, too. Sometimes others don’t seem tounderstand that we, as parents, need to grieve – we cry for our children. It doesn’t matter if it’s one special need or ten: we don’t want to watch our babies struggle. I think we cry for them; so they don’t have to.

    • Carrie


      I love what you said about how we cry for our kids so they don’t have to. Isn’t that true? I know my kids aren’t really to the point where any of them feel sad about their differences, but maybe that day will come. Until then, you’re right, it’s constant worry on my part! It’s so good to know there are people out there who understand what we’re going through!

  • Amanda


    Your story is so touching it gave me the chills! You are one brave strong momma!
    I have a brother with tourettes syndrome and my daughter has SPD and high functioning Autism. We recently found out about my daughters special needs and what you said fits perectly. Though every being in my body hurts for my precious little girl I am staying strong and fighting for her in every way possible and I couldn’t be more proud/blesses to be her momma!
    Stay strong momma! You have 4 beautiful children that are lucky to have you as there mom!

    • Carrie


      Thank you for such kind words. It’s hard to find out your child has special needs, but at the same time it’s great because then you know how to help them more effectively! I know exactly how you feel- hurting for your child but staying strong for her at the same time. Good for you! :)

  • Mammata


    Lovely story….keep writing!

  • Brenda A


    Your children are beautiful!

  • Jenny from the Block


    Thank you so much. I cried at the end. Well said and true…I will fight even as the tears run down my face. Also, this part really struck me…Although it’s sort of a sad thing to have to need therapy, it also makes (my children’s) future so hopeful. My husband wants more kids, but I do not. I am scared of having any more kids with special needs since I am 2 for 2. It is so hard as it is to give them what they need. You are amazing.

    • Carrie


      You are all so kind! I love being part of this supportive community!! Thank you for your kind words. Sometimes I think you just have to cry. Even if you’re fighting at the same time. We’re all just human, doing the best we can. And therapy really does make the kids’ future brighter. But you’re right, it’s a little scary thinking of the unknown of having more little ones, when you already have kids who have special needs. Follow your heart, that’s all you can do.

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