Hi!! It’s 9:50pm on a Sunday night.
What are you doing? Probably getting comfy and getting ready to go to bed. You’ve got the kids down and had time to spend watching TV or reading a book or even taking a bath! That sounds amazing!
Oh what am I doing you ask? I’m sitting here rocking my special needs child for going on almost two hours.
I’ve seen many special needs blogs that discuss their daily routine. Some are so thorough they detail each hour of the day. But this is not that blog. I’m going to clue you in on what my night looks like with Grant, my 7 year old with Cerebral Palsy.
7:30-8:00pm – start getting him and my 9 year old ready for bed (they share a room). That includes changing Grant into jammies, changing his pull-up which he hates and giving him a drink.
8:00-8:30pm – bedtime! Put my 9year old to bed and scratch his head (I’ve done it since he was two and he said I will always have to). Then lay Grant in his bed, turn on the humidifier, give kisses and shut the door.
8:30-8:35 – go to the bathroom and take my contacts out and take my place on the couch. My husband gets Grant (who has been crying since I left the room) out of bed and brings him to me. This is where my next usually 2 hours takes place!
This is where I stop the usual hour by hour play commentary because that’s not possible. Every night is a different struggle.
Some nights it takes 30-45 min and he’s back in his bed sound asleep. But…that’s on a good night which here lately have been very few and far between.
Let me take tonight as an example. I laid the boys down at about 8:15am. Got in my position and that’s where our night is still taking place at 10:15pm.
He has had 3 cups of milk, I’ve rubbed him with oils, we’ve talked, and we’ve gotten frustrated with each other! He is nonverbal however very very cognitively aware and can shake his head yes and no. However, he’s decided tonight he isn’t going to make it easy!!
Round one: he went to sleep on my chest like usual. Then he starts his wiggling and moving. Ask if he wants to go to his bed and he says yes. Take him to his bed and get back in the living room. My two year old quickly hops up in the chair with me. A quick 5 minutes later and he’s crying again. I move Gracie back to the couch with dad and get back in position.
Round two: he just isn’t falling asleep. It’s now 9:25pm and I’m at a loss. I ask him what’s wrong and he looks at my hair. “Is your head itchy?” He still has extremely dry skin and itchiness from the scabies treatments. So I rub some lotion on his head. Okay we have to be ready now…nope! He starts burrowing his head into me and the grinding his teeth (I’m surprised he still has teeth)…here we go again!
Round three: at this point the frustration for both of us is setting in! For me mostly because he won’t tell yes or no to my questions when I know he can. I go through the run of the mill..does your tummy hurt? Does your head hurt? Legs? Feet? Do you itch? He just stares at me. At this point I had to set him down long enough to go to the bathroom to recompose!! Come back in and rub him with oils again. He falls asleep! Yes! Finally!! Nope! Again wakes up and wants in his bed only to start crying again…back in position!
Round four: I apologize for my frustration and give him kisses. He gives me his handsome smile that says “I love you, Mom”. I take a deep breath and don’t say another word. I bunch the blanket up where he can’t see his dad or crazy sister. Finally his eyes drift shut and he’s out! But wait…there’s more! He wakes again…okay his loud and crazy sister woke him when she should’ve been winding down herself! But he asked to go to bed. And so far…knock on wood…he’s stayed asleep. That was at 10:33pm.
So let me recap! I laid him down at 8:15pm and finally at 10:33pm he fell asleep!!
I wish I could say he will be asleep for the night but that’s not the case. He will then wake up anywhere from 1-3 times before I wake him up at 7:30am for school.
So yes the days are tough with a special needs child but the nights are the toughest time of the day…at least in our house!
Moral of the story: even though times might be tough, when he looks at me with love it makes it all okay!
Have a blessed day!