Monthly Archives: January 2013

More Early Years – The Third Arrives!!

Droopy draw's.
Droopy draw’s. (Photo credit: This Year’s Love)

Diapers need to be changed, bottles need to be washed and filled, ready for the next round of hunger. Books need to be read. Snuggles usually go with these readings, and giggles will likely erupt. A preschooler is tucked into an empty arm, and a toddler is wandering aimlessly with a bottle attached to her pink rosebuds lips. Her diaper droops behind her as she toddles past, her bare arms and chest display her lack of caring over clothes. Baby screeches from the perch in the high chair  and reading time is interrupted. Everyone shifts to move out-of-the-way for me to rescue the lonely and unhappy child. Then everyone piles in again and all is right in the world, as we all crane our heads and bodies (somehow God gives us elasto-arms to reach around the brood AND hold the book)  to see the pages of the book I am reading before bedtime. Inevitably a little pushing and shoving interrupt the story-telling a few more times before our story is over.

Everyone races to find something else to do and not put their cute little pj’s on their cute little selves. So, mommy and daddy chase kids to the rooms to put sleeves onto writhing limbs and legs into elusive leg holes.

**sigh of relief**

Bedtime is done… but is it really?  From the recesses of one crib there arises a sounds so loud, so shrill that ears start to bleed and the hearts of the parents start to bleed as well. After night after night of continuous crying… what is it? Is our little one feeling lonely and abandoned for the night? Are they hungry? You try to think of some reason you can think of to comfort him and make the noise stop…Are they sick? What could it be? Dread fills our hearts as we hear him ramp up to begin the nightly 2 hour ritual we’ve come to hate. Two hours of intense crying. We’ve tried everything, so we attempt to let him settle himself. It is humanly impossible to just sit there and let him scream without picking him up, but this night, we do.

These were the early days when our Third Child, Ninja, came along.He was the cutest little blue-eyed blonde we’d ever seen. Even early, his eyes sparkled with a sunny personality. He struggled so, with his health, in the beginning and the fussy nights were a part of it.We held him many evenings, but there were times no comfort could be given and none would to be received. It was almost like he needed to unwind for the day’s activities and settle himself.

We didn’t realize, until later, that he was dealing with a severe case of Sensory Processing Disorder, like our firstborn, but not exactly the same. It affected how he reacted to things throughout his babyhood. When things were good, they were really, really good. When things were bad they were really, really bad.

He developed right on target with most everything except in the area of hearing. His severe gastric reflux irritated the chronic fluid in his ears and so he was not hearing well and not developing speech. We had tubes put in twice and then he could HEAR! Previously, I had taught him some sign language, not knowing if the hearing loss was permanent. It was fun to delve into a little of that language, as I have relatives who are deaf and it gave me a real appreciation for what they deal with and how their language is incredible!

So baby number three (or was it four?) came home. As a foster child, his case looked very much like it would lead to adoption. Then it didn’t, then it did, then it didn’t. It was confusing. All along we hoped this sensitive little man would become our son. And he did!

We learned much more about sensory processing in a whole different way with him. His temperament was so different from J-man’s. They they reacted to overstimulation in completely different ways. It was my mom that pointed out that they were both very sensitive but Ninja was explosive, whereas J-man shut down in a storm of tears.

This  meant we had to figure out what the dickens was going on when everyone was escalating. Whew!  Those early years were intense. They were intense in so many ways.

We were feeling blessed that God had brought another little one to live in our family. He came suddenly one morning, 16 hours after birth and was the easiest transition ever. We didn’t have time to get worked up as we had only 3 hours to prepare for his arrival (or pick up as it was). He felt like family right away.

God is good!

Always a good time to write a book

The best time for planning a book is while you’re doing the dishes. — Agatha Christie

I figured to jump out of the history and get to the present state. I am guessing that since I have dishes in my kitchen that need doing, I should take Agatha Christie’s advice and plan it…

Don’t worry I’ll get back to my nostalgic wanderings about my children’s beginnings and how that brought us here to this place Living on Aspie Lane.

I am contemplating writing a book, a book about life as a pastor’s wife, mom to four adopted beauties, and how having a child(ren) with special needs affects our lives. I know, you are saying to yourself, aren’t you doing this HERE right NOW? Why yes I am and maybe you are reading the first draft of my book that will be wildly read by….the public masses,….of my family. LOL! So I have made this my first book project I am writing online. I am imagining this is not the best way to do it. Afterall, who wants to read a book that they’ve already read? that’s why I’m going to need editors and more editors and people in the business of book publishing to maybe be involved. Do you know anyone? Do you have interest in helping this newbie write her first book.

Ok, I say first book because it’s actually the first that may get published. I actually am writing a book about my family history (family or origin) and some incredible tragedies that have shaped my life and given me hope in Jesus. He has molded me and changed me through them. so technically, I have started my first book but it may not be the first one published. I have dreams to have three separate books written and distributed.

*First book is titled “Life in Aspie Lane”
*Second book is “Endless Ripples” Stories of tragedies that had ripples throughout my life and how God has connected the ripples of other people’s lives that connect to mine and make a different ripple in my life.
the ripples (tragedies) connect joy to the healing. In the end the ripples of our life experiences brought us here. we are who we are molded and made by the ripples from our own life and the lives of others.
*third one is “Lovin’ my Life through mirth…tagline: The ability to survive crazy hard stuff and come out laughing.

if you are an editor willing to do a stint of editing for me, for a good price, let me know. I know I can use the help. I’m not the best at grammar, knowing where the commas go, and according to wordpress, I use a passive voice too often 🙂

If you are a publisher…jump on board. I have a few I trust, but I don’t have an agent yet…may need to get one. I would love to know if there are any professionals interested in taking part of my projects. I’m so new but not SO new if you know what I mean. I believe everything the internets say…just kidding. LOL

So, Here I go on my book writing adventures. Now, if I could just have computers that would work…that would be nice.

Then SHE came

All was right in our world. We had the answer to our prayers in our arms. We revelled in parenting this small, but enormous, miracle.

Then she came.

I had prayed for a girl and trusting God would direct the next child into our family.

But first, he came.

He came shortly after Christmas on a blustery day. He was a tiny and homely baby. I don’t say this often about babies, but he was not a cute one. His skin was red, wrinkly and he was in need of some good old-fashioned love. A few hours earlier his Social Worker had called us. They needed a home for this wee newborn and maybe he would come up for adoption. Even though I had prayed for a girl and had her in my heart, we said yes to this little boy. He was colicky and noisy but we grew to love him from the bottom of our hearts. Our J-man took him in too. He would talk to Z and make him smile.

Four months later, we got the call. A tiny girl had been born and we’d been chosen to be her parents. Her birth history was interesting and we had to consider the fact that it would mean three kids 2 yrs and under. We must have been under the influence of sleep deprivation because we said “yes”. Everything in her birth history, God had prepared me for. I knew she was the one.

Enter – Extreme Exhaustion.

I had no idea you could be that tired and survive.

She was ornery and trying to adjust to life outside. She was a premie and perhaps exposed to drugs, at the very least nicotine. She was a beautiful, dark-haired little princess. Her sensitive nervous system would make her shake and cry. In my delirium of trying to keep up with all the little children, I feel I did not get to enjoy her early days. I would love to go back and remember some of them. I wish I had the time to snuggle her little body and breathe her baby scent in. I would do a few things differently if I had it to do again.

It was six weeks later that Z went to live with relatives. We were so saddened and relieved at the same. I just didn’t think I could take care of so many babies, on a continued basis, without support. We had done those 6 weeks mostly on our own and it was incredibly hard. I’m pretty sure that this time in our lives will go down as one of the most difficult times to survive.

Belle was a fussy baby who didn’t sleep, ever. She napped for maybe 20 minutes during the day and would wake up every 1-2 hours at night. She didn’t love to be held but didn’t want to be put down either. By the time she was 11 months old I was suffering from severe issues due to sleep deprivation. My body was so wound up I couldn’t sleep even though I was extremely exhausted. I got medical help and life seemed to improve. I believe medicine can be a miracle and it was for me. Getting help for my sleep issues made a difference for us all.

It was during this time, as Belle would wake up to every noise, that I noticed J-man having freak-outs. I would get so upset that he’d stand at the stairs (where she was just above) and start crying. She would then wake up and need attention. Sometimes I would have no idea what he was crying at. His food issues were becoming more noticeable as he neared three years old. Everything seemed to be getting more pronounced. I am so thankful I had people in my life who knew who to go to and where to get help.

Managing two sensitive kids seemed to take all the energy I could muster. We thought maybe we were “done” having children. Two blessings were more than we had hoped for. But, as the next two years passed we figured we may just have more room in our hearts for another. We decided to foster-to-adopt again (which is how Z came to be with us for 5 months, before Belle).

Belle progressed in her development at lightening speed and did everything ahead of time, which also gave me some more clues that all was not right in J-man’s world. She appeared to be bored at 2 months old and I can tell you, eight years later, that I was probably right. She had a mind that just needed stimulation. Always moving, thinking and doing. Seeing her progress “normally” gave me insight into how most babies develop.

the two could not be any different. As different as they were, they clashed a lot as she was able to assert herself. She figured, I imagine, that she should have been born first. J-man is a very passive person, but Belle has pushed him to assert his place as the first-born. I imagine that they were born for each other. In God’s infinite wisdom and grace he placed these two incredible people so that, as the saying goes, iron sharpens iron. Indeed, I have seen these two sharpen each other. J-man has had to learn to be assertive, and it took him a LONG time. Belle has had to learn (and is still learning) how to be more sensitive in her leadership. It’s a beautiful thing to see such different personalities come together and cooperate in their uniqueness.

What was it like?

Oh those big green eyes! They were like wading into pools of emerald green tropical water when they welled up with inevitable tears. I found my own soul writhing in agony as I watched his pain. When a mother is helpless to aide their child, it is with a profound feeling of failure. I found myself in this state so many times in a day it all blended together.

When the moments were peaceful, his giant eyes would alight with stars so bright I thought I may die in delight. He was the child I had prayed for, for so many years and I was entranced and entralled by his unique and wonderful personality. We did everything together. I could attend to his every need because I was focused on being the best mom to this child that I could possibly be.

Feeding my boy was a challenge from the very beginning. Oh, he would scarf down a bottle in no time flat. He drank well and regularily. The signs the nurses told me to look for, that would indicate hunger, did not exist. He did not give even a hint of hunger until the pangs hit with a fury. I could not move fast enough to prevent the tortured cries of my newborn. He was just hungry, NOW. I tried inducing lactation so that he would have the benefit of breastmilk and bonding with me. It went fairly well except that he would feed every 2.5 hours and to get the whole system (Supplemental Nutrition System) hooked up took time and with his loud and desperate cries increasing as I tried attaching tubes, filling the bottle and getting him latched…well, it was all out stressful. We lasted 2 months. then we were done.

When it was time to introduce solid foods, he did not like it even a little. His face scrunched up with distaste as I passed the spoon filled with rice cereal into his mouth. A little later, we tried food with texture. Gagging reflexes ensued. He was a smooth texture kind of guy. That lasted a very long time. Getting him to feed himself was nonexistent for years. Tentative were the very first attempts and his reward was not sweet enough to get him to do it again. His first birthday found him looking at the cake instead of experimenting with his fingers.

I waited anxiously to see him acheive his milestones like rolling. Only, he wouldn’t budge. I nudged him over. He looked at me like, “What just happened and why would you do that?” I patiently showed him which part needed to go first to get over. He got it, eventually. Sitting was traumatic. We would prop him up and he would fall right back down because life was better lying down. He would bang his head and screech. I would set him up again and that darn head would drag him back down. Eventually, he realized he really hated falling on his head, so he would sit there with his arms all rigid and concentrate madly on balancing on his bum. An “army crawl” was his mode of transportation if he wanted to dare get a toy with wheels. He loved those wheels, rolling them back and forth and back and forth. He would do that for hours.

Learning how to walk was not self motivated. He seemed to hate the feeling of having his feet on the ground, especially on grass. But, we walked and walked and walked and encouraged and he finally did it! We were so proud! He learned how to walk on the outer edges of what’s considered “normal”.

Social functions usually ended up the same way everytime. Our boy would appear ok one minute, then end up screaming the next. Usually it was when he tried joining in with other kids. He just didn’t seem to understand what was going on. Or maybe it was too loud or….Birthday parties were a bust. Oh my. I can’t even tell you how torturous it was to have him look forward to a day so much only for it to go terribly wrong as the minutes passed. We learned to keep social outings as short as we could. As a pastor’s family we had a lot of social functions. We just did what we had to and hoped it would get better for him.

Through it all, We were just tickled to be his parents and so we thought we should do it again. Parenting seemed a breeze, once you got the hang of it.

The kind-of diagnosis

IMG_0328Adopting four kids within five years (we had a foster son for five months within that time as well, making it five newborns in five years) put life in the fast and hairy lane in an awful hurry. From a family of just my main man and I, to a family of six, had it’s growing pains and we felt them. I’m almost sure that’s where I got the stretch marks.:-)

After having our son diagnosed with Sensory Processing Disorder I sped into researching what that meant exactly. What I found out was that SPD is not a diagnosis in any official capacity. “They” (whoever the people with the uppity up knowledge are) consider it a symptom of something else. It got me thinking “What could it be then?”

I had considered that he may be autistic, but had him put through strenuous assessments (that he hated) and the professionals concluded that he didn’t have. Of course, they said, he is still young…it’s hard to know. Instead he was handed the label “Regulatory Disorder of Early Childhood”. It’s a fancier name for Sensory Processing Disorder. That’s my unprofessional opinion anyways. It was explained to me that his brain was not regulating the signals it was supposed to discipher…in other words, same thing. This “diagnosis” only would hold until he turned five…in a year. What the what?

I won’t get into the boring details about how this affects therapies and funding and who sees him at what times, but let’s just say I felt like I had waded into water way over my head and all I wanted was for my child to not suffer anymore. Somebody make him better!!

He cried over the littlest seeming things. I learned how to ease his little nervous system and how to avoid sensory overload when I could. I learned why he was freaking out over certain events. I learned what the technical terms were for everything involved in his world. And yet, I still knew nothing.

His preschool teacher and Teacher’s Aide were invaluable in our support system. They both knew so much and helped me navigate the treacherous waters of having a child with special challenges, whatever the challenges names were. They even potty trained him for me after two years of my own lame, yet heroic, attempts. I considered them miracle workers!

Life was about to get a whole lot crazier.

Who set the speed limit?

Sometimes a mom just has to blog. I am going to start my story today, but by no means will it end with this post.

I have four amazing blessings that are called children. Sometimes they are human, sometimes they act like aliens. I’m ok with that.

Most days.

The story starts eleven short years ago. We were waiting to be matched with a birth family as we hoped to adopt to become parents. We had been through an incredibly deep rollercoaster ride in our attempts to have children. This January will mark eleven years since we we matched with a lovely young couple who were expecting a baby and looking to place this miracle with a family. We were that family.

Excitement and wonder do not even come close to describing the joy we felt upon seeing this small baby become our son. He was the one who was meant to be in our lives all along. We had been waiting for him.

As his babyhood turned into toddlerhood, we watched him grow and change. He was amazing! He may have been slower in his progress developmentally, but it wasn’t anywhere close to concerning for us. He said his first words at 10 months and we were thrilled with how smart he was.

Being our firstborn, we didn’t really know what to expect, but seeing other children his age, especially a good friend’s son, go through the milestones quite a bit sooner than he started making me wonder.

I had to teach him how to roll, sit, crawl, walk (with a lot of encouragement), feed himself and more. This does not seem unusual if you hear it like that. Don’t we all encourage and teach our children how to do these things? Why did other children accomplish these milestones without much encouragement at all? We needed to show him which leg needed to come out first when getting out of the stroller. The task seemed to confuse him.

Even still, I thought he may be a little behind, but then, he was still on the “normal” range, according to the nurses in the “know”. That is, until a nurse asked if I’d taken him to a Speech Pathologist. I looked at her sideways and said “No. He’s been talking since he was 10 months.” I didn’t see what she saw. A few months later, I would find out what she had been hinting at.

Our daughter was born when he was two years old. She sped through the developmental milestones, making me realize that babies do indeed learn many skills just by trying things out. Try things out, she did! She was a child that didn’t let the grass grow under her feet, as the saying goes.

I started seeing other behaviors in our son that concerned me. He was crying often. He didn’t cry all that much as a baby as I would run to soothe him. He was happy to be soothed by me and I was able to give him all my attention. I was happy to do all the things he found difficult. I know now that by doing those things for him, I delayed his development even more. But what did I know? At that point, I didn’t know I would need to push him to try new things. I would need to let him fall and fail.

His speech, by three, was noticeably clear and he could repeat anything we said. His pronounciation was stellar. What I started noticing was that he was repeating everything we said and not coming up with a two-sided conversation. He mimicked like a champ but that’s where his skills ended.

I asked some questions on an adoption forum that I had been a part of for a while. A wise and experienced mom mentioned that I should look into Sensory Processing Disorder (or Sensory Integration Disorder, at the time). I had heard of it before and made my way to the Occupational Therapist. She assessed him and told me he definitely was on the severe spectrum. We started therapy and noticed improvements.

By this time, I knew I needed extra help. I had been trying to potty train him for a couple of years and was having no luck. Again, with him being my first child, I didn’t know what to expect and all I knew was what I read or had heard from others. No one had dealt with what I was dealing with.

We got him into a special preschool and the knowledge the teacher shared with me was enlightening. The support I received in that time of our lives was beyond helpful. I was directed to resources and therapy that I didn’t know existed.

By life’s circumstances and my son’s needs, we were travelling down a road that I had not realized we’d turned onto. Life’s direction was about to get very scenic and I had no clue where we were!