People "Undiagnosing" My Child

[Momof4blessings]

Okay, I had a very unpleasant experience at my church last Sunday. I figured if I'm still upset about it almost a week later, maybe it's better if I release this event amongst understanding friends.

Just for some background -- I have four children, three of which have ADHD (yes, it's genetic in our family!) And my oldest daughter also has high functioning autism. Can I just say in a nutshell, that we've been to hell and back with my oldest child. ASD and ADHD in one little body has been SO enormous, I can hardly describe it. Getting a diagnosis for her, set us on the right track to actually, productively helping her. She is now doing quite well, but we still struggle, of course. And my two boys -- well, all of you mom's know about raising boys with ADHD. It's been a huge challenge!!! They each have also had speech delays which have required tons of speech therapy.

Anyways.....that's my beautiful family in a nutshell.

A woman from my childhood was visiting our church last weekend, a long time friend of many of us, and I must say, pretty well respected by everyone in my church. Including me. I hadn't seen her in about 15 years, so I was super excited to see her in person. Over the potluck meal she chatted with my mother, catching up on all the happenings in both families. After a bit, I came and sat down to join them, and my mother found another friend and disappeared across the room.

This old friend of ours leaned over towards me and said, "Melissa, I've seen your Facebook posts, and I've heard all the stories from your mom, but can I tell you --- your children are completely on the normal spectrum!" She shook her head, kinda rolled her eyes, glancing over towards my daughter. She repeated her thoughts, "I don't see anything concerning. Your kids are so normal."

I actually sat there speechless for a few seconds.

I felt heat rising in my cheeks.

So many feelings. So many thoughts.

I felt such an intense anger rising up in me, that it was becoming quite uncomfortable.

Normal?? What the hell? Of course my children, despite any special needs, are still normal children! They still laugh and play with other children, smile and have great, successful moments.....but just because she saw them for an hour one Sunday morning, when they were all doing quite well, doesn't negate the diagnosises we've been living with and fighting through.

I felt silly getting so worked up. She doesn't know my every day Life with my children. She doesn't know all the therapies I've driven them to over the years. All the work we've done at home, just to have my middle son talk intelligibly, just for my daughter to not loose it in public settings.

So, because I post pictures and videos on Facebook, of my children being successful, then they don't have ADHD? No autism because Elizabeth looks precious at church this morning and managed to hold her little self together and not meltdown?

Ugh. I felt small. I had no words. I felt cut down. Every crazy hard moment with my kids flashed before my mind's eye. I started saying something about our struggles, but quickly realized -- where do I even start?!? So I tried to smile, and nod. And just let it go.

But, this is what I should have said -- "yes, my children are beautifully normal, whatever that truly means. We are currently treating autism and ADHD in our house, and with treatment, my children are doing beautifully. I'm very thankful we figured out what's going on for each one and have been able to treat each unique situation. We are far from the finish line, though! And obviously, you are unfamiliar with my children's conditions."

It's not like I sat around, looking at my naughty children, and just decided that I have three cases of ADHD on my hands! Oh, and I like the sound of autism, so we'll through that label in there, too.

No. Probably like most of you, we realized that something wasn't right, after years of unexplained struggles. Finally, at our wits end, we found the right medical group, who did the right assessments, and gave us the right answers. Finally. All our diagnosises are clinical, backed up by multiple doctors signatures. They aren't just labels I found intriguing and now throw around to excuse naughty behavior.

Sigh. We'll, I know this is novel length, and I apologize. Thanks for listening, my friends.

[Laufer]

I’m sure we have all heard a host of misguided comments. Did she intend to be reassuring? I am more hurt by the implication that my parenting is at fault.

[Momof4blessings in reply to Laufer]

Thanks, friend! I think she meant to be reassuring, as I do believe that deep down she loves me. She's known me all my life. But, she herself has raised 14 children -- I know, totally crazy! So, I think she somehow considers herself an expert on children. And I'm sure she does have a wealth of knowledge, but her comments regarding the diagnosises we live with, were the comments I've heard from others who were equally ignorant on the subject. Maybe one reason it bothered me so much, is that I've always cared about what she thinks of me....for some reason. I've always looked up to her. I guess it hurt to feel like she sees me as a wimp of a parent, throwing out labels simply because I'm too weak to recognize "normal" childhood behavior. But yes --- I totally agree with you, I've been very hurt over the years as comments have been made by family members that I'm planning it's my parenting. That hurts incredibly, too. I totally agree.

[Mpeoples11192]

All I can say about your old "friend" is...Ignorance is bliss! Could you imagine that she was the parent of 3 kids with ADHD?!? Your children are BLESSED TO HAVE YOU AS A MOM!!! Someone to go to bat for them and struggle with them, YOU ARE A ROCK STAR! Please don't allow the ignorant people of the world to make you feel guilty or bad or less of a mother, because we are here and we feel your pain and love and respect you to the fullest!

[Momof4blessings in reply to Mpeoples11192]

Thank you so much!!!! So encouraging to read your comment! My mother, who has raised more than one child with special needs, has told me over the years, not to let comments like this bother me, but to seek out other moms who are in my shoes. She's a wise woman, my mama! 😁 Thanks for listening and feeling for my situation!!!

[dubstepMaul]

hi Momof4blessings, I totally understand your feelings, as well as your reaction. Your friend's comment was driven by a complete ignorance of ADHD and asd. I have been in your shoes and know how it feels for friends (and in my case, family) to drop bombs on you like that. When I read your post, I felt angry too as I remember. I would have wanted to go off on her and but probably would have done nothing and then felt mounds of frustration on top of helpless, searing anger. Just like you said, where to start?

Perhaps you can private message her on FB and say those things you wanted to say. In any case, yes we your understanding ADHD community understand and you can unload any time!! (by the way, my daughter's name is Elizabeth too - great name choice hahaha)

hugs to you.

[Momof4blessings in reply to dubstepMaul]

Thank you so much for identifying with my situation! Yes, I had considered messaging her, but then I had heard that she's facing a new battle with cancer, and I just figured maybe I should let this go. And that is hard for me, because I hate feeling misjudged, or misunderstood....I often fight hard to be fully understood. But, I almost think I'm just going to have to let this go this time. I probably won't see her again this side of eternity.

So cool we both have an Elizabeth!! 😁

[Terrilynn04]

Ugh! I had the same thing happen about my oldest daughter age 5.5...my friend is an OT and she considers herself an expert apparently. She had literally met my daughter 1/2 dozen times for a max of about 1.5-2 hours each time. 85% of those times she was on Ritalin so of course she acted appropriately! 🙄

She told me that there was no such thing as ADHD. 😳 She said everyone has ADHD of some sort and that she too had it. I asked if she had a formal diagnosis, she did not of course.

She said her OT professor said, “what do you call an adult with ADHD? ....Productive!”

Then why is my 40 year old ADHD twin brother who won’t get treatment still trying to save a buck and find a job he can keep!?

Ugh! I get angry all over again at her ignorance. I said you don’t know my child after spending 5 hours with her. I have struggled through nearly 6 years and finally, after medication, feel some relief as she is fun to be around and is thriving in school.

P.S. I’m not sure about you all but my daughter is a social delight to be around in almost every new public setting...so people don’t see the gremlin she can become at home or at school (once she’s used to the people enough to show her colors).

Sorry about the return novel! I feel your pain!!

[Momof4blessings in reply to Terrilynn04]

Yes --- our situation is so similar to yours. My daughter usually does great at this time in her life, in social settings where she feels loved and comfortable and it's fun and interesting. And that's usually the only kind of places I take her to. I avoid an activity, or a situation, where I know she could become uncomfortable, and then have problems. So, at church, surrounded by her friends, with a yummy snack in her hands, she's talking, smiling, looking just like any other girl her age. But like you said -- that's only a piece of her! The terror she can become at home, or when she's uncomfortable, or her needs aren't being met --- when that has happened in public, people look at me like "what is wrong with your child?!?" It can be shocking to see the enormous shift. It happened at her autism social class recently. She had to pee and failed to use her words. Within minutes, her behavior deteriorated, and she was literally scratching her teacher and having a huge fit. Her teacher was shocked. She'd never seen Elizabeth behave like this, even though I had told her previously about our struggles at home. Long story short -- people who never witness one of Elizabeth's meltdowns, think I'm really exaggerating her situation. So frustrating.

[katcald]

She is clueless, insensitive, or both. I am so sorry this happened to you. I understand how it would bother you, but it's her problem, not yours. (I can tell what a great mom you must be just by your user name.)

[Momof4blessings in reply to katcald]

Thank you!!!

[EJsMom]

Isn’t it nice to know that people can make a diagnosis for you by just reading your Facebook posts! That’s all the info they need. (Sigh)

I’m sorry that happened to you. A lot of people just don’t understand and probably think they’re helping.

[Momof4blessings in reply to EJsMom]

I know! Really?!!! Facebook is so full and complete. Ugh.

[Momof4blessings]

I am SO sorry you've heard such things. Wow...that does make me feel better, to know I'm not alone in this. ADHD and autism and perhaps learning delays -- they are all issues that aren't physical ailments, so they aren't easily seen in many situations. Like Down Syndrome, no one is ever going to blame a parent who has a child with DS.

[MashiSashi]

We hear you and support you! Thank you for sharing 💟💟💟

[coffeemom3]

I have no advice... just wanted to say I'm sorry. I've been shocked by comments from people at my church, too, who I highly respected then and still do now. But I think if you don't have firsthand experience with ADHD, you are (and I say this with no malice) clueless. So sorry you were hurt.