Why I Didn’t Tell Anyone My Daughter Has Special Needs

I could never be accused of sharing too many personal things about myself. I’m definitely the person who would rather hear about what’s going on in your life than to tell you what’s going on in my life. I don’t want to appear ‘needy’, so I don’t share. Even when things have gone really badly, I haven’t shared. Even though I knew that my daughter had special needs, I didn’t share. Today, I’m going to tell you why. Why I didn’t tell anyone my daughter has special needs.

special needs child

For three years.

I’m new to being the “mom with a special needs child’. Not because I have a new child or because something happened to one of the children that I have. Actually, my special needs daughter is almost 4 years old. However, because we lived overseas and away from all of our family and friends, we didn’t tell anyone that she had problems until she was 3 1/2 years old.

Why did we say something then?

Because we were returning home for medical leave. And people were going to meet my daughter.

Here’s the thing. When you look at my daughter, you won’t know that there is anything wrong with her. She will run up to you and give you a huge hug and demand that you carry her and play with her. She is the most outgoing, loving child that I have. (And that’s saying a lot!)

If she is so awesome, then why did we wait?

From what I’ve learned, it’s something that most parents of special needs children have gone through. Lack of support.

So here’s the story. Right or wrong. Good or bad. It’s in the past now, so it can’t be changed.

When Shiloh was a baby she missed every milestone. Every.single.one. Teeth, sitting, standing, ‘talking’, and then real talking. Rolling over, walking, all of them.

But when I mentioned it to people, they insisted she was just a late bloomer. “She’ll walk when she’s ready”. “She has three older sisters who talk for her”. “She’s being carried too much.” So many ways to explain away my very valid concerns.

It didn’t help that we were in a country, where the doctors don’t do anything for special needs children.

Every time we tried to tell someone that something, something invisible, was wrong, they had an excuse for why we were just imagining it.

We stopped telling people.

So the constant screaming, whining, holding for hours and hours at a time was all done in private.

The months that it took for me to figure out ways to help her go out in public without having a breakdown…

The two years that I didn’t even go anywhere for more than an hour…

The almost three years that I didn’t sleep more than 4 hours a day…

The going on four years that I haven’t sat through an entire church service more than 5 times….

Knowing that she required a certain kind of sippy cup, filled with a certain kind of milk. That she wouldn’t actually eat enough food to stop her from being hungry, let alone properly nourished. It was all done with just my husband and me.

The hours of crying (by me) because I hadn’t slept for days, but I still had other children to take care of. Alone.

The moment that I almost lost my faith even though my entire life is devoted to sharing that faith with others. Alone.

The sad thing is not that I had this happen (I’m not that self-centered…). The sad thing is that I’m not the only one. All over the world, parents are being told that their concerns about their child are not real. The very moment when they need to feel the support of those around them, they are being pushed back as overly-cautious.

My heart breaks for those people. They need a hug, a shoulder to cry on, a friend to watch the kids so they can sleep for a few hours. Someone to help them research solutions, keep track of things that are working, make note of things that are not working.

And instead of getting support. They are being ignored.

This is NOT a ‘poor me’ post. I’m not asking for your sympathy. I’m asking for your action. The next time a mom turns to you and says she thinks something is wrong, ask her how you can help. If you know a special needs family, ask them what you can do to support them.

And please remember that not every special need is visible to the untrained eye. Parents of special needs kids work very hard to make sure that their children can have the most ‘normal’ life possible, so the very well-behaved special needs child that you meet for 5 minutes at church, might be a very big handful the rest of the week (story of my life). Nowadays, my daughter’s favorite place to be is anywhere, but home. So she’s pretty well-behaved in public (as well as any child with a developmental level of just at 2 years old), but behind closed doors….!

It’s so sad that friendships have ended, over 80% of people with a special needs child who previously attended a church have stopped going, that families have been unintentionally ‘shunned’ just because their needs were ignored.

I’m done being silent. I’m doing everything that I can to help educate people on how they can help my daughter (still hard to ask for help for me).

But I’m also doing everything I can to bring awareness to those who are sitting in the shadows begging for someone to send a little kindness and support their way.

What are you doing?

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29 Comments

  1. Very well said.

    I went through this with my daughter who is now 2.5yrs old. She was delayed on milestones, had feeding trouble, sensory issues, etc. She was finally diagnosed with a genetic chromosomal disorder at age 2, but before that everything was just listed as “delays”.

    Her doctor said “just wait it out. Some kids just take a little longer”.
    My mother-in-law said “She’s just being two. Don’t get so stressed about it” when she had a meltdown from over-tiredness and overstimulation.
    My husband was in denial and didn’t want her labeled.
    I stopped going places because I knew she would be difficult. I declined the playdates I had always dreamed of because I knew she wouldn’t keep up and I didn’t know how to explain it. I stopped going to church because I knew she would be in her age group nursery, but developmentally need to be in the younger group and I didn’t know how to ask for that.

    Multiple times I was told I was just being over-worried. I wasn’t being patient enough with her. I wasn’t allowing her to grow on her own timeline. We as mothers are constantly being told “Don’t stress about milestones. Every kiddo grows on their own timeline.”

    Well, at some point, that is counterproductive. If I had gone with my gut, she would have had therapy services a year sooner. If I had not “waited it out” and been brushed off, we could have been in peace sooner with tools at our disposal. But we were constantly told not to worry.

    Thank you for your post. Most people don’t get how isolating all this can be.

  2. Oh my gosh. I am taking my daughter to a neurophsychologist in a week for testing, and I’m so nervous, and the worst part is I am worried about how my family will react. You have eased some of that stress with this post – I am just not going to share her diagnosis, if there is one. They have judged her since birth – she’s spoiled, she gets carried too much, she just needs to spend some time away from you, quit babying her all the time…they wouldn’t believe a diagnosis if I gave it to them.
    Thanks for supporting all the moms out there!! You have inspired me to step up and be a better friend to my fellow struggling moms!!!!!

  3. i am in China and i also had a son with special needs. but he’s special to me, and the gift from the god. i love him so much and i would like to reset my life goal as to take good care of him. i cried severaltimes at night but it didn’t help at all. the only thing i could do is to be strong and to help him. best regards/sunny

  4. What an honest, raw post. I appreciate you sharing your story. I know having a special needs child can feel very lonely – and we all need to do our part to make that not so…

  5. I completely understand this! I lost many friends (they simply “moved on” without me) when my daughter with special needs was small. I got many pats on the back from doctors and friends who completely dismissed my concerns when my daughter regressed or failed to make milestones. I got lots of advice suggesting things I must have been doing wrong since my daughter wasn’t making progress in certain areas. (“If you didn’t restrict her TV time and let her watch Sesame Street, I’m sure she’d be talking by now!” No, I’m not kidding. Somebody actually said that to me.) It was and still continues to be difficult, and my daughter is now 20 years old. But the good news is that I’ve formed new friendships with some wonderful people who love and support my daughter and me! And I’m very thankful. 🙂

  6. Your last line…what am I doing?
    Well, I am crying. You nailed it. Alone. Pushed away. Told I was overly-concerned. Lost friendships. Did I mention, alone, yet again? Going on more than 3 years of silence and it is slowly eating me up. Thank you for telling me I am not alone in my feelings…

  7. My son is 3 1/2 years old. I actually tell almost everyone that he is special needs. But i still get the “it will come in time’s” or the “Boys develop slower than girls”. Or whatever it is at the moment. In public he is an angel (most of the time). At home he is off the wall. I’m exhausted. We don’t go out because we are afraid a babysitter would not understand.
    Personally I am tired of everyone telling me he is fine. Yes for the hour that a stranger spent with him he acted “fine”. Stay the whole day. See if you still think he is a normally developing 3 1/2 year old at the end of the day. Let me know how that goes for you.
    As parents of special needs children we want awareness. We want acceptance. Share your child’s special need. Let others know his/her limits and what can be expected when those limits are exceeded. If we don’t share the special need and the behaviors then the acceptance will never come.

    1. Yep. They can act great for those few minutes! I have been able to find several people who love her and have been able to keep up with her. I hope you can find someone as well!

  8. Your post made me cry. Our special needs daughter was born more than 11 years ago. I didn’t go to church for more than a year because of her compromised immune system and her needs. Even now, I only get to go to church maybe a couple times a month. But it doesn’t much matter because I don’t have any friends left. On one hand, it makes me sad. I miss having friends. On the other, I’ve learned how to really depend on God.

    1. I’m so sorry that you didn’t find the support that you needed. I hope that now that your daughter is older, that you are able to connect with people who can offer you the support and friendship that you need. And God is absolutely there with you every step of the way!

  9. Thank you for your story. I am a teacher and a mum. One of my daughters has ADD which is often highly frustrating but nothing compared to what you have experienced. I hadn’t realised people in general are so dismissive of developmental delays. And if they refuse to accept the reality in front of them it follows that they will not see the needs of the parents. That is actually quite disturbing in a church context, because if there’s one place that should go out of their way to offer support it’s the church community.

    Do we all put support in the ‘too hard’ basket? I’m sure many parents of special needs children don’t like to openly ask for help and so clearly we need to be more proactive in offering genuine, on-going support.

    I truly appreciate reading your story, thank you for making me more aware.

    1. As a missionary and pastor’s wife, I really am disappointed that many churches do not seek to meet the needs of people with special needs. We are making it our goal to make our church as ‘special needs’ friendly as possible.

  10. My hearts breaks formyou in your silent struggle. As a teacher of special needs preschoolers, I have seen this over and over again. Parents whose valid concerns are dismissed by family, friends, and the medical community. Or even worse, good moms who are blamed for their childs behavioral or other symptoms. My youngest, a daughter, has an emotional and sensory regulation disorder. When she was small we were frowned at, glared at, had rude comments made, were avoided and shamed because her terrible outbursts were viewed as something “we should be able to control” (said one well meaning commenter to me when she was three), bless you in your challenges and for speaking out!

    1. That is a very unfortunate experience! I keep hearing situations like that in the many places I connect on the web and it’s so sad!

  11. wow. Have I been looking for someone to put into words what I have been trying to say. We have only told close friends and family what is going on with my daughter bc we get the same reaction (she will get better or grow out of it or Drs are not sure yet). You can’t fix optic nerve hypoplasia and fovea hypoplasia. My daughter is visually impaired and that is reality. But she looks normal so people say oh she will be fine. Like you we’ve become our own support system and only educate those that seem to really care enough to understand. We r not ashamed of our daughter, we just chose not to announce it bc of the pity ppl give or the oh she will be fine statements. Thank u for shedding good light on the topic of children with special needs and may God bless u.

  12. “over 80% of people with a special needs child who previously attended a church have stopped going”

    Do you have a link for this? Not because I don’t believe you, but because I DO and I would like to be able to share it. I’ve written about this in regards to people who have children who are wired differently and I don’t think most people really get it.

    1. I don’t have a link for it. Unfortunately it was a statistic I read somewhere in my reading and I don’t recall where. Sorry!

    2. I would believe this. I was very active in my church and even served as a missionary and then our daughter stopped meeting milestones and so we stopped going to church. I have been about 3 times in the last 2 years

      1. I’m so sorry to hear that! I hope that you find a church who loves your family including your daughter!

    3. That was us, too. I couldn’t juggle two non ambulatory toddlers by myself when my husband was at work, and no one noticed or cared when we were missing. Eventually, it was easier to just not go. We got no support at all from our church.

      1. I am so sorry to hear that! I hope that you can find a church that will love you and your whole family!

  13. I have just read your post and cried. I knew what you were going through from the title of your post and with each paragraph I knew and understand how you feel.

    My son is 4 and we live in Northern Ireland and are learning although we are getting a lot of support from the health service and friends.

    If you want to get in touch please do. Sending you love and understanding.
    You are amazing and so is you daughter.
    God bless you both

    Christine xx

    1. I too cried reading this post! Your experience with your child’s special needs and with other’s reactions to your concerns, mirrors our lives with our daughter. She is now 10 and it took until she was 9 to get an answer for her genetic syndrome. People told us “she is just behind, she’ll catch up”. There was no support from anyone as I worked full-time nights and slept for 3 hours before picking her up for several therapies before my other kids got home from school. Then to repeat work all night and more therapy the next day. I don’t regret anything, my daughter has taught me so much. Today she is in a wonderful special education program that meets her needs and has teachers that understand her. Thank you for the post!

  14. Well put! Our daughter was diagnosed early with craniosynostosis (premature fusing of the skull). We had never heard of it, but knew something was wrong. We were lucky that it was found relatively quickly after several different doctors and months of tests and whatnot. At 4.5 months she had open skull surgery (CVR). It changed our lives (work schedules, day care, etc). The more changes, the less support we had around us because colleagues we had known for years we never saw, my husband I never saw since we work opposite shifts. She’s doing super three months post op. We know that she will possibly have some delays. We are getting use to our new normal, and trying to find ways to get out. Our daughter also has severe fright of strangers so we can’t leave her by herself and can’t leave the house with her often. It is hard and I relate to this post!