Daily Struggles

A diagnosis is burden enough without being burdened by secrecy and shame. -Jane Pauley 

Sometimes it’s hard to know what is typical of a 2 or 3 year old when it comes to behaviors. You always hear that you shouldn’t compare your child to any others, but then how do you know when there’s a problem? With this post I want to write about our day to day struggles. Are some of them going to be typical 3 year old behaviors, without a doubt, but just consider them on top of other behaviors and you can see why this mama is so tired sometimes. 

Since we brought Drew home as a newborn, getting him to sleep has been horrendous! Once asleep, thankfully, he’d sleep all night and still does. It took many, many conversations with an OT and Special Instruction therapist and weeks and weeks of keeping a log of bed time routines to figure out the perfect combo. Before the therapists helped, it could take up to 3 hours to get Drew to sleep. And most of that 3 hours included crying and screaming. We tried everything: cry it out, bed sharing, rocking, singing, music, staying up til he got tired (he’d stay up past midnight if I didn’t try to make him go to bed!), baths, and on and on. After weeks of trial and error we found the perfect combo for Drew. 

1. Undress/change diaper

2. Therapeutic brushing and joint compressions

3. Massage with lavender lotion

4. PJs on

5. In bed with weighted blanket

6. Story (recently it has to be Grump Cat every night)

That was it. That simple routine took 3 hours of screaming to 30 minutes or less and asleep! Sigh! Thank goodness for sleep! 

Another thing I haven’t shared a lot about is Drew being non-verbal. He use to say a few words, but hasn’t in a couple months. He knows a lot of sign language, but he doesn’t use it spontaneously, meaning he doesn’t initiate communication. I am very good at reading body language or knowing our routine. For example, if I ask him if he wants a drink, I usually don’t get a response but if I ask him if he wants milk, I get the the sign for milk or a no. Day to day it doesn’t have much affect on me, sometimes he gets frustrated when I can’t figure out what he wants, but I am pretty good at figuring it out. One story that makes me emotional is one I finally admitted to myself, even before d-day. 

        A little while ago I watch a friends daughter for the day. She is the same age as Drew and they had a fairly good time. Sometimes I thought she was bored when Drew didn’t want to play with her. To make matters worse, we live in town, and I wasn’t taking two 3 year olds outside, so we were stuck inside. Later my friend told me that on the way home that night, her daughter talked the entire way home about how much fun she had at Drew’s house. That made me feel so happy! But then came time when my friend watched Drew for the day. She said he had a great time and sent me photos as well, but all I got on the ride home was silence, as usual. I couldn’t ask him what his friend and him played with or how much fun he had and that makes me tear up. A similar situation is when I pick him up from preschool. I only know what he does from what his teacher tells me. Those are the moments I feel overwhelmingly sad and helpless. 

The sad moments pass and are far in between because I think I have a different view/emotions having a teaching background, because people are always so sensitive talking about test scores and stuff, because most people get emotional about stuff like that too. Not me, test scores are a glimpse of what he can do. I see Drew everyday, not just 30 minutes during a test. I know he’s a great problem solver, very affectionate, and loves music. Tests show his deficits but life shows his abilities. 

Another struggle, at least for me, is when out in public and someone starts talking to Drew (because he’s so incredibly adorable) and expects a response from him. 1. He is non-verbal so you aren’t going to get a verbal response. 2. He is usually being distracted by his phone so he doesn’t have a meltdown because of the sensory overload. (Lights, noise, crowds) and 3. Just say Hi and keep moving... He might wave but 10 questions is getting us both nowhere except awkward responses from Mama! 

I feel like I have written a lot, but it’s only been about sleeping and communication! We also have sensory needs. Like wearing a compression shirt everyday, finding things he likes to chew on so we can phase out the binky, the constant need to push things, and twisting our hair so much we get a bald spot and having to find a replacement behavior. I’m sure the list could continue, perhaps I can continue in another post. 

I want to thank you for following along with me this far. I hope I can offer some insight into our life and be open and honest as we continue to keep on keeping on after the diagnosis.