When Your Child Has Hidden Special Needs
Special Needs

When Your Child Has Hidden Special Needs

It’s not obvious to the rest of the world what’s really going on with my son. This is what it’s like when your child has hidden special needs.


I could feel it.

The other parents staring. Their glances back and forth, between my sweet son, me and then each other.

My youngest just started gymnastics. He really wanted to do it, and I really wanted to get him into occupational therapy. Like his brother, as hormones have started to change him into a man, they have also brought on an increased sensory sensitivity that is negatively affecting him every day.

The sand hurts, when it used to be his favorite.

The sound of the Yahtzee dice being thrown causes him to cover his ears.

He screams at me in frustration when he can’t get the socks on right, or the chicken doesn’t feel right in his mouth.

It feels like groundhog day. My husband and I look at each other and knowingly nod. “Here we go again.

When Your Child Has Hidden Special Needs

I am deeply ashamed to say it, but I really enjoyed having a child that required less of me in public. Up until a few months ago, his speech delay and processing speed were noticeable, but never something that required me doing anything other than translating sometimes. “No, he said he wants rice, not lice.”

It’s different now.

For him and for me.

He is anxious, all the time, especially when we are out in public.

He wants so badly to fit in. He is social and loves playing with others. But he struggles with how to do it, with limbs that seem to be going a mile a minute, and speech that is regressing.

We decided to start gymnastics because we could get him in immediately – waiting lists for therapists, that work well with ten-year old boys, are a mile long. And it has been wonderful.

He loves it.

His body syncs up every lesson. He adores his coach. He sleeps well the night after.

It really has been a great option for him.

And, every single time I am sitting in the parent area at the gym, I am aware of it.

I am that mom.

Again.

When Your Child Has Hidden Special Needs

The mom with the son who is struggling in social settings.

The mom with the son who is making unusual movements in an effort to calm his anxiety.

The mom with the son who struggles to get people to understand him when he says his own name.

The mom that has a separate conversation with the coach, every session.

The mom that feels the stares, and feels left out.

The mom of a child with hidden special needs. It’s obvious something is going on, but it’s much more convenient for those around me to assume it’s my parenting.

 

Here is the thing – I am not sure I care anymore.

It used to get to me. In the early years of navigating our differences, I was so sad.

The sting of judgement and rejection have always been tough to deal with. Of course they have. But I know now, that my experience is never tougher than my son’s.

When Your Child Has Hidden Special Needs

Yes, I am ‘that’ mom.

I am also the mom with two boys, who are learning how to fight for what they need.

I am the mom who sees bravery every single day, in her own home, as her child simply gets out of bed and smiles, ready to take on the day. I am the mom who gets to watch her naturally active son, learn to tumble and flip, grinning from ear to ear when he accomplishes his goal.

I am the mom who God chose to be these two boys’ mom.

And that fact alone makes me so very grateful to say,

I am content to be that mom. 


ThatMom
What do other moms say about being ‘that mom’? Read more stories here.

When Your Child Has Hidden Special Needs

Yes, I am that mom, and what I want you to know is this.

The hardest part for me is not the stares or the judgement – it’s the lack of support and care.

When your child’s needs are not as obvious, there is an assumption that they need less help, if at all.

I am asked (accused?) often of being too soft on my boys, on providing accommodations, or even medications that they don’t really need.

I am asked this by those who have not known us for very long, or are not at all involved in our day to day.

They don’t know what it’s taken for us to get here, how hard my boys have worked for us to even have this conversation. 

Hidden needs are still needs.

The more we acknowledge and accommodate them, the better my boys are at navigating the world around them. 


For more information and support:

Am I Spoiling My Child Or Accommodating His Special Needs?

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12 Comments

  1. I always find myself nodding while reading your posts Shawna. I am ‘that’ mom too. And I definitely care less than I used to, although I must admit that it still tires me and I still find myself wishing that I could just be every-other-mom at times. But if it means that my precious children get what they need, I am very willing to be that mom.

  2. I have been in these type of situations many times, and felt the same way. Reading about it now and not being in the middle of it at the moment, I cannot believe the mothers who judge our children! It is so very backwards! It makes me think about how things must have been like during the civil rights movement. Or for the first woman going to medical school. In fact, Elizabeth Blackwell, the first female doctor in the U.S., had to endure a very hostile and judgmental environment. In the disability community, these kind of negative attitudes, that some people display and that make inclusion of someone with a disability very difficult, would be called ‘ableist.’ The burden to change is on those who are so very judgmental, not on our children. I think it is great that you are “that mom.” You are the mom who does not judge others and would try to help someone feel included rather than trying to marginalize those who need to be included the most.

  3. Used to be called ‘that awkward stage’ but now everything has to have a label. Seems to be just normal development that all go through at one time or another. Keep your chin up?

  4. That kid is the best. I’m glad my kid found yours. It helps with my own understanding.

  5. Most people are good at heart. I truly believe that. And many of these good people are uncomfortable around what they don’t understand; until they do. You may have some parents there that will not be “enlightened “ – make that their problem, not yours. Most people with show kindness. Take a deep breath, stand up in front of the parent audience and tell them about your son. Most people are good people and by educating them, they will join the “village” standing with our son.
    I suggest practicing at home first. Figure out exactly what you want them to know about your son. I think you will suddenly find yourself with more allies in that group than not. Good luck!

  6. I can relate. As the mom of three kids with hidden needs, I was/am “out there” with the coaches, teachers, tutors, therapists, getting judged and not giving a rat’s ass. However, what really gets me—and this happens frequently—other parents “step in” to offer or provide their “help.” I truly believe this is because my girls were adopted later in life. Other parents act as though they view them as “community property” and are perfectly comfortable instructing them on what classes yo take, how to do their hair, what products are best for them, etc. When, how and why do these parents do this?!?!

  7. I have two neurodiverse boys and I am on the spectrum myself (late diagnosed at age 40), and I also have mental health diagnoses that are partially inherited and will probably pass down in some form to my sons, although I also had a horrible childhood and experienced so much trauma that some of my mental illness is due to that (PTSD, BPD) while my neurological differences (Asperger’s, Bipolar Disorder with psychotic features… yeah I’m fun) are mostly genetic. I have been that CHILD and I am now a mother to two wonderfully different children. I actually don’t go out much and we homeschool, so I am lucky not to encounter the uneducated judgments very often (and, um. A NT “autism mom” is called a Mama Bear. Well, an autistic autism mom with BPD, PTSD, and Bipolar is a mothereffing Mama T-Rex, so people in my family and my friends have learned the hard way not to cross me about my kids. I will burn them to the ground. Sorry/not sorry) but today I was literally just looking at adopting a cat, and encountered it! I decided the cat was not for us because he nipped at me and swatted the shelter volunteer, and I shared that it would be a bad fit because this would likely scare my autistic kids, and this woman (the shelter volunteer, an older woman in the Baby Boomer range) started talking about “oh her neighbor’s son is autistic or has SOME issue” and is afraid of her dogs and is 15 and “oh it’s such a shame his parents didn’t try harder to expose him to dogs” like WHAT? First of all why judge a frightened child for being frightened? She actually did a horribly insensitive imitation of how he looks when he sees her dogs and cowers in fear, like Trump did when he was making fun of a disabled person! And then to judge the parents?!? AND to say this to me when I shared my children have autism?!? How does someone not understand how incredibly rude that is? I tried to discuss with her that autism is a neurological difference and the child can’t HELP being afraid and she was all “oh I know” but clearly had no clue. Let’s just say I did NOT adopt that cat and am not going back to that shelter. (My husband and I have actually decided on golden retrievers instead, which we had in the past.) Honestly I was so enraged I had to drive around blasting angry music for awhile before I felt calmer. I normally try to give people the benefit of the doubt but I cannot believe how horrible this woman was acting and her judgmental stance. Mamas keep standing up for your kids, and thank you (as a formerly “difficult” child myself) for doing so.

  8. Bless you Shawna; and your precious sons. I am “that Mum” in Melbourne, Australia, and it comforts me no end to read your posts. Thank-you for your honesty and encouragement.

  9. I just read this is my son is spinning and dancing around the living room, playing with a 2 foot long string of yarn. 🙂

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