I’m really not sure what I’m writing. My husband and I have been in some other universe the past several days. I feel like I need to put on gloves and prepare to punch someone in the face. I’m anxious and defensive. It feels a little bizarre. Nothing has really happened yet.
At the same time, I’m tired of people being obnoxious and clueless. I’m not going to help that any by keeping quiet or keeping secrets about what we’re experiencing. That’s not going to help us or the next person that comes along looking for help or the general blissfully ignorant public.
Compared to some people’s experiences this is not a big deal. This is a little thing. This is something else that will pass. It’s just a matter of pushing forward and figuring it out. We just need to get the therapy and all will be as it should. We hope.
It doesn’t matter what your kid is going through it’s going to put you in mama bear mode. This is just a snippet of what we have going on.
Ok, I’ll be less vague.
In case anyone isn’t aware: We have a 4 year old daughter. She is our firstborn. She met all the big milestones on the early end of average. She knows who and what she likes. There’s not a lot you can do to convince her otherwise. She is a firecracker. She is stubborn (and I mean that in a good way). She is strong-willed. She is spirited. She is caring and kind. She is smart. She is an awesome big sister. She loves animals (ants to dinosaurs to zebras – they are all “so cute”), legos, reading, coloring, and anatomy. She is so creative. She sings and dances and smiles. When she is happy she is full of joy. She likes frills and sparkles, bows and ruffles. She’s got a smile that is contagious. She is curious. She loves to learn. We adore her.
She can be challenging to parent though. She demands a lot more energy and attention to be spent on her, especially when things get emotional. When she was a few months old I read Dr. Sear’s description of “high needs” kids. A lot clicked. A lot started making sense. She’s never slept well. She’s always been so sensitive to her surroundings.
Now, there were times I saw red flags but we never pursued things because you know “she will grow out of it” or “that’s normal for some kids” and whatever else people would try to reassure us with. She was meeting milestones and our doctor wasn’t particularly concerned with her sensory issues as an infant or toddler because nothing else seemed to be amiss. She’s healthy and generally happy.
But, when you can’t go into a public bathroom without your 3 year old panicking it’s hard to listen to the “she’ll grow out of it” or to keep ignoring those red flags. I don’t mean the typical 3 year old that doesn’t want to do something fit either. (We got plenty of that too though!) This sort of thing isn’t the same. Let me give you a picture. This is one of the easiest scenarios to explain and it encompasses much of her sensory issues. We could go into a bathroom at Target. She tenses up. If no one else is in there she’s ok for the most part. At this point, she knows I’ll warn her before I flush (if I can), turn water on, or start the hand dryer. We whisper too. Before she got used to this, she would hold her hands over her ears, keep her head down, and cry. She would nearly shut down. I avoid public bathrooms for the most part anymore when she is with me. Now, she’s 4. Now, she does ok. She covers her ears and makes a clicking noise with her mouth until we leave the bathroom. She asks me nicely to cover her ears while she washes her hands.
I know they say not to compare but contrasted with my 2.5 year old going into the same bathroom without any concern in the world and acting like nothing was bothering her raised more concern for my 4 year old’s actions.
This happens at other times and places. We tried doing fireworks shows for the holidays last year. It was bad. She had ears covered. Still, any boom or zippy firecracker had her heart racing and she would go blank and burrow into her daddy like the biggest, scariest monster was there about to snatch her up.
More and more of her sensitivity to things have come up as she’s gotten older. It’s confusing sometimes. She’d gladly play in the dirt all day. Yet, when she found out little sister had used a marker on her bed frame she got very upset about it being “too dirty” and “so disgusting”. She has taken different things and smeared them all over her skin more than once. Yet, if a drop of yogurt gets in her hair or her skin on a bad day she loses it.
Don’t worry about telling me how to be a better parent or trying to guilt me there. I feel like crap most of the time. We’ve tried everything. I’ve read so many books. I’ve talked to so many people. We’ve made some progress here and there but overall I feel like I don’t know what I’m doing with her. It takes a lot of time, patience, calm, and communication to figure things out with her. Don’t get me wrong. She is a joy to me. She is one of my favorite people. I love her brain. I love watching her grow. But wow, it’s confusing and challenging. Sometimes it’s like I can’t quite keep up with her mind.
Anyway, combine all this high-needs, sensory stuff with a serious desire to be in control all the time. An easy scenario to explain with this is when we’re leaving our home to go wherever. She will pitch a good fit if we “go the wrong way”. She will plead with us to turn the other way or “go the right way”. She pays enough attention from her seat in the back of the van to know which directions we take to certain places we go most often. Occasionally, if we let her she can tell us where to go. It’s pretty funny in a way. I guess you could say she has a serious case of “back seat driver” syndrome.
Whenever she does get upset it can last for hours. I wish I was exaggerating. Anything she gets particularly upset (or excited) about she will bring up over and over for days on end. No matter how much explanation is given she will pursue the issue like we haven’t said a word.
There are other things that seemed “off” we just couldn’t pin down.
Something was up. We knew that much. We decided to bring up these things at a check up. It was recommended we get her evaluated by an Occupational Therapist (aka OT). Some people are familiar with this but some are not. Essentially, a pediatric OT works with kids on their sensory and motor skills.
OK. We were all for that. Let’s do it. Well, after months of waiting and calling we finally got an appointment. A little over 2 weeks ago we took her in. She did so well! She went back with the OT without a hitch (not something she’s known for doing well, she’s picky about who she likes) and they had nothing but good things to say about her. She behaved well and let her sweet spirit shine. She actually wants to go back and “play”!
We had a while to wait for the report.
I’m not sure what we were expecting.
Maybe “Oh yeah, she has some sensory stuff going on. Just keep doing what you’re doing.” or “Here’s this stack of books to read and some activities we can do.”
More like: she has some pretty distinct delays in some areas (some you weren’t even thinking about) and 1 hour of therapy twice a week is recommended. We’ll get the OT underway and go from there!
Here’s the gist of what we’re dealing with right now.
- 13th percentile Visual Motor Integration (~15 month delay)
- 1st percentile Visual Perceptual
- 5th percentile Motor Coordination (~14 month delay)
- Hand use is 99th percentile but grasping, eye-hand coordination, and manual dexterity are between 2nd and 4th percentile (approximate 6 month delay)
- On the sensory profile there are 23 sensory areas looked at. Her results were 2nd percentile or lower for 13/23, 2nd to 16th percentile for 3/23, and typical for 7/23
That was a lot for us to take in. The OT was very informative and helpful when we spoke with her about the results. Some of this stuff we just didn’t think about. A lot of it would become a huge hindrance when it comes to school. We are right on the cusp of that so we are relieved to know this beforehand.
The good thing is now we have a plan in place. We will be able to address the sensory and auditory processing, the motor skills, and the emotional/social issues. I can help her at home in addition to therapy. We have intentions of homeschooling anyway so we can plan curriculum and activities to give her the most benefit when we get to that point. We’re just waiting on some paperwork.
The annoying thing is that it’s hard to reach out or find others going through the same. That list up there is a mouthful and as of right now there is no particular diagnosis for what our girl is struggling with. Even if there was, every single kid is different. A lot of people don’t just chit chat about these things.
Hopefully, hopefully if someone happens upon this it gives them some reassurance! I’ve googled and searched forums only to create more questions for us rather than find answers. I would love to hear from people that have experienced anything in similar.