Thursday, March 24, 2016

Sleepless in Tennessee

Historically, when I'm awake in the middle of the night blogging, I'm in active labor and don't quite know it. Let's hope that's not the case here. I just was tossing and turning in bed after Abel screaming for the last few hours and decided my thoughts couldn't turn back off until I got this off my chest. It doesn't matter that I'm tired on every level. Exhausted physically and especially mentally. I have to write through this tonight because I feel so desperate for respite for me and this family.
As Abe gets older he's becoming more challenging. He is 3.5 years old now and should be gaining vocabulary and communication skills. His hearing age is 18 months and he communicates on that level. Sometimes he seems to be slightly behind that level. Merit (19 months old) has begun to surpass him in spoken and receptive language and maybe this is why this is bothering me so much lately. It's in my face every day. I see it. Can't ignore it. I have twins-- twenty months apart.
It was at this age with Kinley that I started to see the light at the end of the tunnel in regard to explosive tantrums, behavioral issues, and regulating his frustrations. Sure, he has his days but with an expanding vocabulary, it became easier for him to express himself more appropriately. Abel seems to be headed in the opposite direction. His fits are almost a personality trait at this point and I spend my days at the end of my rope. He can be perfectly happy and raging mad in the same 15 second time span. It's as if he forgets that he can choose a word, a gesture, or anything to help get his point across. He resorts to bulging eyes, immediate tears, flailing on the ground kicking and screaming. All in a matter of seconds. His screams are all day long for me and they filter into the night, too. He can't stay asleep and he wakes up crying frequently. He vacillates between screaming and moaning in the middle of the night and we are all left in a sleep deprived state throughout the week. Nothing seems to comfort him at night. There's nothing we can do. He just cries. Of course, to me, this is so stressful. I hear it all the time. It also leaves me with plenty of time to think about what else might be going on in his little body and mind. My heart aches for one thing, ANY thing to be easy for him, but right now all I can see is the struggle. 

You know what strangers see? They see another child who can't behave. They see another lazy parent who can't control her children. I see it all over their faces when we go out to eat. I see their eye rolls, their whispers, their stares. My reaction goes one of two ways. The stress of the day (this life) closes in on me and I lose it in a puddle of tears OR I plaster my game face on with a smile and try to ignore the helplessness I feel in all of this. Is excessive crying a form of torture training? If so, I have a lot of experience. A lot.
I'm so tired and in desperate need of your prayers for him, for me, for this family. Thanks again for listening. I think I wanted to write this out for catharsis, but also for documentary purposes and in the chance that another cochlear implant preschooler parent happens this way to my corner of the web and finds a commonality here. I haven't lost hope that this is just another phase. I still cling to the notion that one day, Abel's struggles will be that the girl he wants to date is uninterested or he didn't make the varsity basketball team... and his lack of speech, sleep problems, and health concerns will all be a distant memory.

5 comments:

Sheena Zarb said...

I understand where you are coming from, to a point. O is delayed in speech, badly. I get all the things that come along with a toddler not able to tell you what they want or need. I am sure you situation is 10 fold to mine. I only have him to focus on, for now. I am super considered that once the new baby comes I will be a walking zombie. How will I be able to function with 2 children not sleeping through out the night and go to work part-time. Oryons therapist suggested a weighed blanket. I made one but he hates to be covered so that didn't work. I don't know if you have tired one before,but if not you are welcome to borrow mine. Good luck in this phase of life. If you have any tips I am open ears.

Sheena Zarb said...

I understand where you are coming from, to a point. O is delayed in speech, badly. I get all the things that come along with a toddler not able to tell you what they want or need. I am sure you situation is 10 fold to mine. I only have him to focus on, for now. I am super considered that once the new baby comes I will be a walking zombie. How will I be able to function with 2 children not sleeping through out the night and go to work part-time. Oryons therapist suggested a weighed blanket. I made one but he hates to be covered so that didn't work. I don't know if you have tired one before,but if not you are welcome to borrow mine. Good luck in this phase of life. If you have any tips I am open ears.

Jackie Hendricksen said...

Another CI mama here, my lo had a progressive HL till he was 3.5 yo due to bi lat EVA. Late diagnosed at about 18 months is when we started our journey of discovery and he was aided just after his 2nd birthday. At that point he had a few words he retained from before some of the more agressive loss, we tried signing, but he hated it, he knew people used words to communicate, he lived in a world of sound beofre the volume got turned down on him. And we struggled to find ways to communicate, to make him happy, his hearing fluctuated so often that most of the time his HA's were not programmed correctly, and the hairs in the cochlea got more damaged and sound became more distorted with each fluctuation. He couldn't talk but that was how he was determined to get his message across. We got the stares in public, we cried in exhaustion, the most basic interactions like 'do you want juice or milk?' became meltdowns of tears and frustration. We saw anger in our baby, anger such a small child shouldn't experience. When he did finally lose all hearing in both sides, his world was silenced... PROFOUND... nothing left to amplify. It took almost 6 months to get the cochlear implants approved by our insurance company. Six months he lived in silence, remembering a world with sound, bringing batteries for hearing aids and toys, wanting us to turn the sound back on. In the beginning of those months he would hide his face if I tried to sign to him, or use gestures, he wanted to hear me. I remember him throwing his favorite book across the room because it had those buttons that made sound and he couldn't hear them any more. Finally the day came, the surgery was approved, no doubt by the grace of God we had our surgery day scheduled! We knew we had a long road ahead of us, but the journey back to sound and communication was finally going to begin for our sweet boy, he was going to have something he didn't even know existed CONSISTENT access to the world of sound. December 23rd 2012 activation day! Our amazing audiologist came in over Christmas break to activate him bilaterally! It was a Christmas miracle ♡ It took 8-9 months form him to really begin to grasp what all the sounds were, many he had never had access to. Fast forward 3 years and 3 months later, he is closing the gap on language delay, he's in Kindergarten, knows all his letters and sounds, is learning to read and write, he understands so much, he's so creative in make believe play and makes up elaborate super hero themed stories, all from a small boy people said would never talk. He is smart, he's worked so hard to get where he is and because of that he has this amazing compassionate, positive sprit. It's still hard sometimes and I think there will be struggles related to his deafness crop up throughout his life but I know one thing for sure God has amazing things in store for him and every struggle and tear, sacrifice and hours worked toward his goals is only going to make him stronger, make our family stronger. What you are doing IS HARD, REALLY REALLY REALLY HARD! but SO SO WORTH IT!♡ Rejoice in every triumph no matter how small, the journey is long and often so tiresome, but when things really start flowing and connecting for you little one those endless struggles will become a memory you write about, the worries fade out and when new struggles arise you'll be able to take them head on... thinking 'I got this!' because you do, you got this now and you'll look back and remember that. Stay strong mama you are not alone, remember to find the joy in your journey ♡ ~ Jackie H. P.S. extra sensory input is commonly needed for D/HH kids, jumping, swinging, lifing, massages where you tug a little at the joints, and my favorite a big tight HUGS ♡ You can find good books for ideas on amazon and tons of free ideas on Pintrest ;) Extra sensory input helped my little guy through the hardest times.

Jenna said...

While we are not in the exact same situation I do understand where you are coming from. Bear is 2.5 years old and his vocabulary is behind that of his peers. He throws temper tantrums and cries at what feels like the drop of a hat. It's like he knows the words or sign to use, but his emotions make it impossible for him communicate what he needs at that moment. Just know you aren't alone nor are you the only one going through this.

Jen said...

I've heard weighted blankets can be very helpful in calming down stressed kids. My son, who is autistic, also went through about 6 months of no sleep, tantrums, crying, etc. I wish I could say I know what I did because I don't. One day, he just started sleeping again. I'm praying for him to start sleeping better and to give you a little break.

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