It’s The Anger That Kills Me The Most.

7cf77725e9964d99406746d6eacaee53I have been obsessed with autism/apraxia/SPD research lately. I don’t know why it just hit me so hard but lately it’s all I can think about. Cooper is such a mystery and doesn’t seem to fall into any one category.

So, I have been scouring blogs looking for Cooper’s twin and I can’t seem to find one. I keep looking for a social 3 year old with no words who has delays. No go on that end but I keep finding all of these amazing moms that are so much farther than me. And I usually, if not always, cry when I read their posts. They are so strong. They are fighters.

The way I see it, in my life, there are two parts: The diagnosis and the day-to-day survival. They are two very different things.

The diagnosis of one or all or any of these disorders is crushing to a parent. The child that you would die for suddenly has a label. Suddenly, the future you pictured is different. Not necessarily bad, just different. You grew this baby in your tummy and you love them so much it hurts and all of a sudden they are part of a ‘group’. And what if that group isn’t loved by others? What if they aren’t accepted? What if they can’t handle the struggles that are ahead of them?

And the worry is so heavy you don’t think you can hold it all up. Plates are spinning in circles above your head…therapy appointments, IEP, Preschool, Doctors, etc. There are CONSTANT questions about your child making friends and having a job and growing up. I call it the unknown.

And WOW, is the unknown brutal. You spend so much time researching and watching your child. Are they doing this and are they doing that? What category does that put them in? You can change your mind daily, if not hourly, about wanting a diagnosis.

Would a diagnosis make the day-to-day any easier? I honestly don’t know. I know it would help me towards acceptance and most likely help my overall well-being. But really, honestly, would it help the struggles. I don’t think so.

So, for me, the hard part isn’t an autism or a an apraxia diagnosis. The hard part is watching Cooper struggle to learn and adapt. The hard part is managing ALL of my emotions with this and watching what it does to my relationships. That’s the hard part that no one tells you about. And you feel how you feel…whether you like it or not.

You will be mad at the people closest to you because they don’t understand. You will be jealous of other people’s kids. You will be mad at your husband for not empathizing enough. And overall you will be so freaking mad at yourself for not accepting it faster. And you will be so angry that you wish your child was different.

So, I guess it’s the anger that kills me the most.

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14 thoughts on “It’s The Anger That Kills Me The Most.

  1. I know a little boy who is 5 and has apraxia. He is very social, very friendly and loving. He was delayed in other areas, but they were all areas that had something to do with communication. After starting preschool, some of the other delays have started to disappear, but he still has very few words. If Cooper is social. I would almost shift gears more toward apraxia and preschool language disorders. I’m sorry. I know it’s tough. And trust me, I’m angry a lot of the time too. Keep working! And keep having fun with your kids!

  2. I have been where you are. At 3 years and nine months one of my twins was diagnosed. At almost 5 the other was diagnosed. Even with diagnosis you still get days you feel angry. But it does get better. It is ok to be sad and angry and every other emotion you feel. It is a journey. Your journey will never be exactly like anyone elses but we can still hold hands and journey together. Thank you for sharing your journey and letting me travel with you. Here anytime you need a shoulder to cry on. X

  3. Oh, I have so been where you are. You are never going to find Cooper’s twin. Never. I know this bc I looked for Finn’s twin and I never found one. I slowly realized that it was impossible to see where Finn ended and the autism began. So, I eventually stopped reading the “how to” books and the guides bc everything I needed to know about my kid was sitting right in front of my face. I started trusting my gut more and doctors less. I sought solace in other Moms, bloggers and the occasional glass of wine!
    I know it seems impossible, but take it one day at a time. And if that seems impossible, one minute at a time. You only have to be strong enough for this minute. Don’t worry about the next. Other mothers aren’t stronger than you. You can do this!

  4. Kate, you are such an honest, intelligent, articulate and fiercely-devoted mama.

    You know yourself very well … it shows in your writing.

    Your fan club believes in you. Your anger (and other emotions) will cycle back and forth. That is normal. Painful, but normal.

    Please be as kind to yourself as much as your son would ask you to be. You are a kind and sensitive person.

    Keep writing. Keep up your good fight.

    Life will find the groove you deserve.

    Be well,
    Dee

  5. Just know that every singe parent, parents of normal children (or “normal children”, because none of them really qualify) parents of a child with special needs–every single parent out there that loves a child; we all hear you and feel you.
    My sister had twins long before I had my babies, and I helped her raise them during their first years of life. I was just a teenager, and I couldn’t even imagine how she was doing it without me or her husband there. Anyway, when I got pregnant for the first time I kept PRAYING that there was only one in there. So one day I brought it up with her and she said: Why? My life was no different than yours. I didn’t know it to be any different. Two was all I knew. And yes, it’s apples and oranges, but her point was the same.
    Her highs were higher because her lows were lower.
    Good luck, I hope you’re feeling better.

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