autism · Down syndrome

How you handle a diagnosis.

I wrote Abby’s birth story in the glow of just becoming a mother to my only daughter. Those first few months were tough, but they were great because of the outpouring of support we received from our friends and neighbors, along with the virtual community.

Everything I wrote in that post I felt. I don’t want to go back and change anything. We did take it…well… but that’s not to say that we did it right. Because the honest truth of getting ANY diagnosis with your child is that there is no right way to handle it. What matters is that you let yourself feel what needs to be felt, and then, at your pace, you begin to heal and move forward.

I am not against prenatal testing (I am against the most common use for it, though) . I think it’s very important to know what you’re dealing with. I’ve heard people say, “We don’t get tested because it wouldn’t change anything anyways.” I understand that, but testing does change things. If your baby comes back with a diagnosis, you will receive a higher level of care. This is SO important. Had Abby not been induced the morning she was born (my labor had stopped, they were going to send me home, but I had already had an epidural put in so they went ahead with it) we could have very well lost her. By that time, the placenta had not only stopped functioning, it had crumbled.

Prenatal testing for parents who don’t consider abortion is still a double edged sword. With a prenatal diagnosis, you’re left with all of the worry and none of the joy.  And then you have the rest of your pregnancy just to sit with the news. That’s ROUGH.

And I’m not saying that those who have a diagnosis at delivery don’t have the right to be upset about it either.  Or a diagnosis of anything else later in your child’s life. My son, Casey, was diagnosed with autism at 18 months. That was a terrible time for me. It took me a long time to process that I had a special needs child and that I was a special needs parent. I grieved HARD over the loss of the life I thought I had wanted. Everything changes when your child gets diagnosed with a life changing condition. And it’s okay to go through any emotions you need to with that.

When Abby was born, I already was a Special Needs parent. My life had already been radically shifted to a new normal.  I had only positive experiences with people with Down syndrome, many of which were in the preschool programs with Casey.  I was okay with it at birth, to be quite honest with you, because I was SO worried she’d have autism. In the special ed programs Casey had been in I had been, quite honestly, jealous of the parents of children with Down syndrome. Their kids seemed so much easier in comparison.

Life is teaching me new lessons. Abby is easier than Casey, medical issues included. But it’s comparing apples and oranges. I would be lying if I didn’t tell you that there were many times I just wished she was normal. That our life was normal. There are times when a certain kind of sadness comes creeping in. When it does, it’s okay.

Emotions are okay. It’s okay to feel a little pissed off at the hand you’ve been dealt. You didn’t sign up for this and you’re not a bad person or a bad parent for saying that. It is what it is. If you’re really struggling, now or in the future, get help. Get good meds. Do whatever you have to. The best thing you can do for your child is to be healthy and as close to sane as you can be.

It’s going to be hard. There will be days and even weeks without sleep. There will be small heartbreaks and large trials. But it’s going to be so good. I promise you that. In fact, in a year, come back and tell me how right I was. I love being right. 

(My husband took this picture last night. Abby held on to me so tight after I had a terrible day and pretty crummy week. She makes things better)

11 thoughts on “How you handle a diagnosis.

  1. You are my mom hero. I look at what you do and know that because you can do this so can I. Our diagnosis' are different but the outcome is similar. We are moms who are concerned with the welfare of their children. Your posts provide me with a check on reality. Love you Lexi

  2. This is why you are loved, Lexi. You tell the truth, and you make it plain. So many special needs parents gush about their blessings– of which there are always plenty– but gloss over the sometimes disheartening parts of their lives, leaving me wondering what I'm doing wrong. You make it clear to me that it's okay to feel loss and happiness at the same time– that doesn't make me crazy, it makes me normal. 🙂

  3. I have stuff I want to say (good stuff), but the words won't come out right. So I'll just say that you are so awesome! So full of love for your children and so honest about how things are at the same. You're real. That's why I like reading your blog. 🙂

  4. Lexi, you are an inspiration to me. I have ONE kiddo with special needs, and honestly, her issues are not that major, but I still find my head reeling thinking about people who have multiple children, let alone multiple children with special needs. You have put such an amazing spin on things. You are positive, uplifiting, snarky, and heartwarming. Thank you for being my cyber friend. Thank you for sharing your stories with us.

  5. Thanks for sharing this. I've been struggling this week since my son was diagnosed with SPD and his nuero ordered genetic testing since my son "doesn't quite look normal." I tried not to kill him over that statement and I'm in panic mode until we get the answers. I hate the unknown and the wait is killing me . This from a mom who refused genetic testing when I was pregnant since "it won't change anything."

  6. I’m crying over here… I love you. I can’t wait to read more! (And write some, too! My daughter was diagnosed with DS at birth as well, she’s 5 years old and changing the world as we speak and stuff 😉 )

  7. According to your article if you want to keep your kids safe from diseases then you must aware from the daily routine of your kids.If he or she does not feel good then you should take a treatment and exercise.I am agree with you.Thanks for this article!!

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