Updated: Oct 4, 2018
The phrase most often heard from new parents is “I am so tired”. The beauty about the tiredness you feel when you have a newborn baby – is natural and expected. You have been warned over and over again. After all it’s in the baby books you read. New parents don’t You realize how valuable sleep is until they lose it. It’s hard to be upset when your beautiful perfect baby calls you in the middle of the night because they need you. A baby needs their parent’s love and attention, not only to survive but to thrive.
I remember so well the intense feeling of love when I held my babies skin on skin. A true gift! I loved to draw in a big breath to smell my baby. Nothing beat Johnson’s baby shampoo. The softness of their skin and the image of their tiny fingers wrapped around one of yours. Oh how I loved having babies!
There are so many magic moments but then there are several crap days too. As a mama bear we get tired of drooled stained clothes – we want our bodies back to ourselves and hell yeah some sleep would be good too. As mother’s we fell guilty about wanting to get back to ourselves. So we ensure to meet our child’s needs before our own. Sadly, we sometimes never get to our own needs. That becomes a habit we can’t break – we end up doing too much for our children as they grow. Despite the endless number of books published on parenthood some of us still get it wrong.
Of course having gone through the baby stage a long time ago I giggle when new parents tell me how tired they are. I laugh because do they really think they will be saved from the inevitable lack of sleep? No silly. Even if your firstborn sleeps through the night at 6 weeks just wait for baby number two – yup that one will want nothing to do with sleep. All this to say regardless of how many babies you have you will lose sleep. As our children age we will worry if we are meeting their; basic and emotional needs. Are they doing well in school? Can I do more for my child? As parents we will lose sleep over the fact that our child has had their first heartbreak. In essence having children equals less sleep.
Having a child with autism is tired 2.0 version! I would simply like to share this with you. My angel baby, Keyan did well in infancy with his nights. We did not have to use the “Ferber method” on him like we did his older sister. Then something happened – our precious little baby turned toddler became and insomniac. At around the age of 4 Keyan started to wake in the middle of the night and was up to play. He was up as though a new day had just begun. Although Keyan is non-verbal he is very vocal. There was no way to muffle his screams. This wasn’t just a stage. I have to tell it is not normal for a developing human being to not want to sleep. We need sleep to heal and grow. Keyan would wake up at 1am and bounce off the walls for 4-5 hours and then he would crash as though it was nap time at daycare. This went on for 6 months until my husband and I went to consulted the doctor. We had hoped as a team we could figure things out. We simply couldn’t.
My husband and I were at the point that we couldn’t function. My waking in the night made me feel hungover in the day. I couldn’t think straight. I walked around in this sort of haze. Everything and I mean everything became an overwhelming chore. All the while my husband soldiered on in his career. To this day I don’t know how he did it. The doctor’s put Keyan on Melatonin and then Benadryl in hopes that it was a phase we could get him through. It helped reduce the time it took Keyan to fall asleep but it didn’t stop him from waking in the middle of the night. As parents we fought a long hard battle, not wanting to medicate our little babe but we had no choice. During that meeting with the doctor as soon as I opened my mouth to speak I lost control of my emotions and sobbed uncontrollably. That is the type of thing sleep deprivation does to you. We decided to start the medication and it helped.
It took us months and months of playing with doses before we got it right. Keyan now had a bedtime routine and medication that would help him sleep through the night. The thing about toddler’s is they become children who become teens who grow. They grow out of their diapers and then their pull ups. You know how people always tell you stories about other people they know. Well I remember when Keyan was young an acquaintance said to me “I know someone who has a child with autism who’s about 12 years old and is still in diapers”. It’s equivalent to someone saying to you after you miscarry “Oh that’s God’s way there must have been something wrong with the fetus”. These are things people say in a weird attempt to connect with us and it in no way makes us feel better about our situation. I was so fixated on Keyan not spending his days in a diapers that I never over thought how the nights would continue to haunt me. I was proud Keyan proved my acquaintance wrong ;)
As Keyan grew we encountered another night time problem – “Bed wetting”. We had experienced a small window where the meds were helping Keyan sleep through the night but then he started waking because he would wet the bed. He had outgrown pull ups which was part of the equation for a good night. So we had to try “adult” incontinence solutions simply because of his size. The problem was at the same time he had discovered his penis too. You know how boys love to play with their penises. Let’s just say after penis play time his penis would peek outside of the “Depends” and you guessed it – he peed the bed. Now we had a new routine – Keyan off to bed – sleep for a few hours – wet the bed – mama/papa enter – change the boy, change the sheets and give him medication to fall back asleep.
Now you have to understand that we are years and years away from the tiredness new parents experience. We are not merely changing a diaper. We are now changing PJ’s and an entire bed to get our little boy back to sleep. We wake up exhausted and the first order of business in our household is to wash sheets. Every single day for ever and ever we are changing sheets. I like to remain on the positive side of things so I was very happy that Keyan’s 4-5 hours of wakefulness turned into 30 minutes to 1 hour to settle back down. That meant I could get two blocks of sleep. I have to tell you as a middle aged mama bear I would kill to know that every night when I go to bed I will be getting 7-8 hours of sleep.
It’s ironic because there are times Keyan will sleep though the night and not wet his bed. The catch is we never know when. I kid you not when I say we have excel spreadsheets to help track Keyan’s sleep and bed wetting. We even tried the industrial “pipi alarm” that they rent out for $300. This system guarantees that your child will be dry after 30 days. I thought I had found my miracle. For a few weeks Keyan was dry but oops back at it again. We rented the “pipi alarm” a second time but Keyan being smarter than the machine learned to deal with the sound of the bell by sticking his fingers into his ears. So he decided – what the hell – I’ll just pee the bed. He wanted control and he had it. Back to a waking child and a wet bed.
Then came the raging hormones. Keyan went through puberty very early – he was only 10. That shit hits you like a ton of bricks…it’s hard on our children and it feels even harder for us the parents. Autism doesn’t get in the way of teenage hormones. My son not only gives me attitude and disagrees with me, he also tries to assert himself at times when I have no patience for it. Hormone shifts brought us back to the dark side of nights. Again Keyan would wake for several hours. I would go to him in the middle of the night feeling dizzy and sick to my stomach. I got so tired of being tired! We have gotten to the point of exhaustion where I asked my husband to promise me we would never talk of sleep again.
There are also those random nights that Keyan makes it all the way through. Ironically our bodies get so used to waking up – it’s equivalent to trying to sleep in on weekends. All week we wake at 6am and are elated by the fact that we won’t hear an alarm clock in the morning. As much as your heart wants to sleep in our bodies says oh no it’s time to wake up. So in fact there are nights Keyan doesn’t wake up but I do. When I am lucky it takes me 5 minutes or so to fall back asleep but the truth is there are nights I am awake for 2 hours trying to fall asleep. You follow me? To make things worse there are nights I have to take medication to get back to sleep and I wake up cranky because I didn’t sleep the medication off. ARGH
Luckily my in-laws take the kiddos once in awhile for a sleepover – not for us to go out and party but merely to survive a night without having to wake up – to catch up on much needed sleep – to recharge our batteries before illness or depression set in. I will always be grateful to my in-laws for that. My mom sleeps over when we go on weekend getaways and/or our week long vacation sans-enfants down south. For that we are truly blessed.
It has been a long journey of trying to figure this sleep thing out. I know I am not alone in this battle because there is a large percentage of people with autism who have sleep disturbances. I never give up hope that one day my guy will decide to sleep his nights. But for now – we are tired!!!
There are BLOG entries that can be expanded upon but sometimes functioning in this tiredness I can only go so far. Today I am tired – tired from waking in the night – tired from being sick last week – tired because it’s a grey day and tired simply looking at my “to do list”.
I want to say this…being parent to a child with autism means being tired 2.0. If ever you see me and want to talk about being tired then I beg you to move along.