To Tell or Not To Tell She Has MDS

When Thea was four I signed her up for preschool. Filling out the application, I paused when I saw the question, does you child have any disabilities? I scribbled no like I was covering up a dirty secret. Guilt crept in my heart because I knew my little girl, by school standards, belonged in that category.

But the guilt vanished as I envisioned a group of girls sitting together giggling while Thea sat in a corner by herself. I saw in my mind her teachers looking at her differently, expecting less from her. So I left my answer as no, and submitted the application.

In the months leading up to preschool, we noticed that Thea wasn’t speaking as well as the other kids her age. So I contacted the Child Development Centre who sent a speech language pathologist to examine her. The SLP confirmed that she was behind in her speech development and suggested therapy. They also offered to provide a support worker to be present in Thea’s class to help her when needed.

It was a great offer, but now I was right back to where I started. Should I tell her teachers or not? I wanted Thea to have the support she needed, but at the same time, having a support worker in the classroom was like yelling through a bullhorn to the kids and parents that she had a disability. The SLP assured me that the support worker would be seen as just another teacher in the class and that no one would know she was there specifically for Thea. But I wasn’t convinced.

So I decided to ask my best friend, who is also a teacher, what she thought I should do. She said, “As a teacher our job is to help your child. By you telling us what’s going on, we can watch out for her. If she starts to fall behind in anyway, we will recognize it right away and put a plan together on how to support her. If we don’t know, it might take us longer to identify the problem and create a solution. It’s like playing catch-up vs. being ahead of the game.”

Her answer made sense, but I still struggled to make a decision. So I knew I needed to pray about it. See God promised me when Thea was in my womb that she would be ok, and I believe that. I believe God sees Thea as this amazing, special child that he has created. It’s funny because I don’t always believe that in myself. But when it comes to Thea, I have never wavered that God will provide everything she needs. So I have learned to trust him with anything to do with Thea. I always know he will take care of her no matter what.

So after praying and thinking about it, and asking my parents, who I believe to be very wise, I realized that I needed to tell her teachers.

The next day, I went to the preschool and asked to speak to the teacher. Before I could get two sentences out about how Thea has MDS, the tears started to flow, I fought to keep them from coming but my emotions took over and I lost control. After I finished explaining the situation, she thanked me for telling her and assured me that Thea would never be singled out.

I left that day feeling relieved. It’s funny because I constantly find myself fighting this battle between not telling people because I don’t want her to be judged and telling people because I would never want her to think I was ashamed or embarrassed of her. It’s a tricky thing.

That entire preschool year no one ever knew that Thea had MDS, other than the teachers. She was never treated differently or singled out. In fact it turned out to be a real blessing. The teachers knew how to help her when she struggled with expressing herself and the support worker was there to give her that extra bit of attention when she needed it.

If you are struggling like I was to make this decision, it’s important to do what you think is best for your child. But I have to say, I was really glad I ended up telling her teacher. The fear of them judging her or singling her out completely disappeared. I found out that teachers really want to help, and will appreciate you so much more by being honest with them. It’s a team effort. You can’t do this alone, you need a team of people who will support your child in every aspect of their life and their teacher is an important part of that team.

Published by

3 thoughts on “To Tell or Not To Tell She Has MDS

  1. Wow, this something I struggle with to tell or not to tell because you don’t want your child to be single out. You just hope and pray everyone can see him with love an acceptance. Thank you for sharing!

    1. Your welcome:) I really do put all my trust in god because that’s all you can do and let him figure out the rest! From my experience so far, every time I’ve opened up about Thea people have told me about their struggles with their kids . Everyone goes through something , so I think it’s important to talk about it so we can all support and go through this life together!!

  2. My goodness I’m so glad I found your blog! My son was just diagnosed with MDS at birth( we did a prenatal genetic screening but not amnio, he also showed few signs of DS at birth but we got the microarray done). I love reading insights of a momma who is a few steps ahead of us. Thank you for sharing!

Leave a Reply