When Delays become Disabilities--Part I

My Precious Blessings!!

I never in a million years ever expected to be a mama to 7 treasures.

When our infertility issues lasted for so many years, and we didn't become parents until well into our 30's, and most of my high school friends had children graduating when I had baby showers, I would have thought, 2-3--

But God!!

When we first began the adoption process, our farming was our lifeblood, and we insisted on "healthy" children, because we were sure, due to the demands of farming, that we NEEDED healthy children...and were tremendously blessed with Kendell and Nicholas-both have had excellent health, they both have tremendous minds, and came home at 1 1/2 and 2 1/2, both within 365 days.

They got all the snuggles, all the bedtime stories, all the room decorating, all the bazillion toys and all the showers of attention from extended family and our many friends that any biological child would have received.

I was an instant mom of virtual twins, and loved it.

They were TOTALLY loved and accepted, instantly, and there was never a question about their future. They were bright, they were healthy, they were joyful, they were FUN to be around, and our little picture of "NORMAL" was as we envisioned-

Then we moved, and didn't think any more children were in the plans, when all of a sudden, both Chuck and I had just a HUGE desire to add to our family.

Kendell was baby nuts, at  8 yrs old, and we began the process again, this time with a different agency, and a different country.

After MUCH prayer and seeking God's direction, we selected an infant program in Taiwan, thinking a baby was surely in our future.

Within a few months, altho there were many referrals to other families of very little babies, we still waited.

Until a wonderful day in early Aug, 2007, when we got a call about a little lad who had JUST turned 3, and had JUST been relinquished by a very young birth mom. "Would you consider a 3 yr old?" our agency asked us???

Almost without hesitation, because the NIGHT before, we had prayed for God's direction, and to hear Him clearly, we KNEW this was for us, and we began the wait to bring home Tyler, our totally joyful, healthy, and creative now almost 10 yr old!!!

Surely, our parents thought, we were done now!!!

I guess we thought, "Well, maybe???"

And then, I got a HUGE yearning for a baby girl, and we thought, OK, maybe one more???

As we perused the internet, considering available children, we both began to feel something different this time.

We felt so blessed to have 3 such wonderfully healthy children, what if God was calling us into a special needs adoption?

We fell in love with a little face, and our journey into the world of Special Needs was off and running.

We bathed this decision in prayer, we sought godly counsel from godly friends, we begged God to make this clear for us.

And everything went so quickly-the placing agency in Taiwan said YES to our request in 1 day-unheard of!!!

Funds fell into place, in the midst of one of the WORST years of farming we had lived through!!!

We searched the internet about brain injuries, and heart issues, as our treasure had a baby brother who had a supposed heart condition, and we waited an excruciatingly long time to finally get a picture of our littlest son,

Who had no diagnosis, other than tachycardia-an extremely fast heart rate, and he was on HORRID meds to correct that.

We knew so little about them, but we knew the birth mom had issues, so we were prepared (or so we thought) for more cognitive issues for both boys.

In the beginning of this adoption, I had agreed with God that 2 boys were for our family, and I readily laid down my dreams for a baby girl. If this was what God wanted for us, then I was on board with Him, 100%.

Once we traveled in May and June of 2010 to bring our boys home, we found an extremely TINY little baby, who could not even sit up yet at 16 months old, without support, and who could not tolerate many food textures and who had no idea how to receive love and attention.

Isaiah was a sweet boy from day one, very gentle, very quiet, very compliant, while his baby brother was, definitely the poster boy for the slogan, "Dynamite comes in small packages"

We did have reservations about his delays, but without any concrete diagnosis, and virtually no medical info other than about his heart condition, we resolved to give both boys the best home we could, and hope and pray for the best.

Well, Isaac made little bits of progress over the next year, but was quite delayed, and we finally agreed to take him to a neurodevelopmental clinic his second year home to determine the extent of his delays, and see when he would "catch up"

Isaiah had been diagnosed with cognitive issues from the same clinic a few months earlier, as he had a double whammy, a piece missing in his brain, and a brain injury. He would proceed, slowly, to hopefully a 12 yr old level, and we hoped Isaac would fare with a better test result.

However, we were quite shocked when his chromosome test came back abnormal.

Our little man, our baby, was going to receive a label too, with cognitive impairment, severe speech apraxia, extremely small stature, and extensive delays of motor skills, like dressing, potty training, etc...

A brain MRI showed no similar damage as Isaiah's, so we had to begin attributing all of his behaviors to the chromosome disorder. The ADHD, the obsessive, compulsive attitudes, the extreme LACK of impulse control, the poor oral motor skills, including eating and speaking, the obsession with throwing things, and spinning things, and WATER!!!!(probably not an official diagnosis for this, but it sure ties into the lack of self-control our little man has!!)
As we sat in with the Dr's when they gave us all their findings, we were floored.
Not because we didn't know something was off kilter, but because they made it sound SO BAD!!!
They said he could easily be the most impacted by disabilites (as they had already met our 2 girls, but we didn't have a diagnosis for each of them yet).
Our heads were spinning, our emotions were on overload, and all we wanted to do was scream, NO!!!
Not Isaac. He will grow up, he will speak, he will stop some of those incredibly insatiable habits of his-someday!!
Now, 2 years later, we see things a bit differently.
We see that many of his quirks will only get more intense.
His impulsiveness gets more alarming the bigger and quicker he gets.
Although he is learning many things, he is probably on a 3 yr old level for many skills.
He is learning simple things like the letters, and their sounds-and I think his love affair with an ipad is having some huge impact on this-his cuteness is still carrying him through many rough behavioral days, Isaiah's laughter is still overriding his need to hit Isaac.
They are still little, they are still cute.
But what will the future hold for them, and for us?
To be continued....

Our 3 Little Buds!!!
Tyler is soooo good with them, and loves them, no matter what!!


Blessings
Chris

The summer of Dr's appts-part 1

I have been such a distant blogger of late.

I so appreciated the feedback after my last post, and decided it was time for some lengthy updates on each of the children.
This post will be about Isaac.

 

Our little peanut, our little man, our baby, our walking 1 man destruction team, our non-stop, revved up, little terror on 2 short legs!!!

He is a one in a million.

He is energetic, playful, LOUD, loves to throw, Loud, loves to be outside, LOUD, and loves IPAD and any other technology he can get his little hands on, and did I mention he's LOUD??????

BOY, if those sounds ever get channeled into words, we are going to be in for trouble-the guy makes noise all day long-but due to his lack of language at the moment, most of it is just loud shreiks, screams, squeals, and babbles.

He loves his family, and has graduated from his crib to his sister Kendell's bed, and boy, does he feel like a big boy now. She, of course, adores him, and is a very good second mommy to him when mom #1 is running others to Dr's appointments or doing other mom duties.

 

Isaac is very little, and still only weighs 26 pounds. He is wearing size 24-2T clothes-FINALLY.

He will be 4 in February:)

He moves-FAST-and he moves all day long-he wears us out trying to keep him out of trouble.

He has decided he is bored with most of HIS toys now, and wants only the school toys-and protests, LOUDLY, whenever he can't have what he wants-about 20 times a day:)

Isaac underwent a 2 day neurodevelopmental assessment back in July.

They look at speech, physical and occupational therapy areas of concern, neurological, genetic, audiology, IQ, and nutrition, just about anything that a guy can have tested, Isaac has had lately.

He also underwent a sedated brain MRI in August as part of this clinic.

PRAISE the Lord, the MRI showed NO physical issues with his brain.

That just leaves us with more questions tho, as we seek to find out why his neurons aren't connecting the way they should be for a guy his age.

YES, this is a mud puddle-did I mention heLOVES water? Especially COLD water???

 

 

He also had lots of blood tests done, including a test called CGH-which analyzed the chromosomes in his body's chemistry.

Little Isaac has a chromosome disorder.

It leads to cognitive delays, speech delays, and short stature.

WOW

an answer-of sorts!!!

NOW, the fun really begins, as we try to put more pieces of the puzzle together, and try to figure out how best to help him achieve all he is meant to achieve in life.

Will he ever live independently?

We don't think so.

How far can he go?

We have no idea yet!

BUT

I have stumbled upon an organization in PA called

Family Hope Center that specializes in empowering parents to heal their children!!!

NOW THAT MAKES ME EXCITED!!!!

I love their philosophy of assessing the things a child is doing, and by that, determining what areas of the brain aren't working properly, and teaching parents how to help their children's brains work better.

It is on my wish list for early in 2013 to spend some money on their DVD program and work my way thru their coarse.

I have also found out there are 2 women in our state who have some training from this program-and one is only about 30 minutes away-NOW, THAT MAKES ME REALLY EXCITED!!!!

I can't wait to contact her, and see what advice, help she can give us.

 

Isaac receives weekly speech therapy at our local clinic-actually, he is one of 4 that I take once a week-it is a long morning of shuttling children to and fro-and Kendell is my helper at home, preparing the next to leave, and keeping things on an even keel while I am gone.

Nick helps out when he is around, but these days are usually Kendell's and mine to "make it happen"

I can't say Isaac is responding well to therapy so far.

He has a few signs--but his preferred mode of communication is screaming, grabbing, and crying.

We have seen a change lately-from his very happy-go-lucky little guy antics to a more frustrated, I'm not getting what I want attitude.

It is frustrating for all of us.

He just doesn't receive instruction well.

No just has never meant NO for Isaac.

It doesn't help that he's the baby-and LOOKS so baby yet, that it is hard to treat him like an almost 4 yr old.

(SHHH, his photographer sister doesn't know I know these are on my laptop! It's a birthday surprise for me-but it's just too cute to pass up)


He has no interest in potty training.

His table skills are minimal.

Some days he eats wonderfully, most days he is a trial to endure at most meals.

He can be hyper, does not sit still, SOME part of him has to be moving at all times, and the only rest we have is when he is napping, or sleeping at night.

He is just always on the go, and he really controls our household at the moment.

We really do love him to pieces, but it is time to reel in this monster, before he becomes totally uncontrollable.

I'm just not sure how to go about it!

did I also mention he loves bouncing things? Even things that aren't meant to be bounced:)

 

ANY advice is welcome, because public school is starting to look like a real option for him next year. I just can't get anything done, and he won't let you work with any of the others without pitching a first class fit if he's not included.

He definitely knows what he wants-unfortunately, it's usually not what we want at that particular moment:)

This has not been an easy assessment for Chuck and I.
We had such high hopes that his delays were simply due to orphanage life and a heart condition that left him malnourished and under-stimulated until we got him at 16 months old.
WE still have hopes, and we love the progress he has made, and is trying to make.
Sometimes, its just hard, hearing stuff about your kids!
I mean, really hard!!!
When you watch your child go thru these battery of tests, and come up lacking, and you don't know for sure what to do to really help him the best-it can bring some sleepless nights.
But I am certainly thankful for the Dr's that I have gotten to know quite well over the last 2 years, and especially this summer, with 3 going thru testing. They care, and that really helps.


we sure do love him, and he can be such a ray of sunshine.

 

There will be 2 more parts to this little series, as I address both Lili and Rose's evaluations-stay tuned:)

Blessings
Chris for all 9 of us!!!!

The special faces of Special Needs

Did you ever wonder about Special Needs? I mean, what it looks like, what family life is like, how people adjust to children with different needs, whether they be emotional, cognitive, behavioral or developmental or physical?

A few years ago, I would have confidently said, "we don't do special needs."However, our son Isaiah has changed our outlook, or maybe it was God changing our hearts!! We now know that any children added to our family will be special needs. They will have some issue, some illness, behavior, or delay that is termed, "special need". In the case of our 2 new daughters, their special need is quite simply age, although Rosalyn  does has a repaiared cleft lip as well.

We have acknowledged that physical special needs can be challenging, as can mental and developmental.Let's face it, all special needs are stretching for the family. But, I wouldn't have it any other way. We see love, laughter, joy, excitement, fulfillment, growth, and many other things as we parent our boys with extra needs. It can be frustrating at times, it can be exhausting, it can be difficult, BUT, it is also truly a delight to watch them come out of their shell, to grow, to acquire new abilities, to accomplish tasks, to comprehend beyond what we thought they would understand, and to begin to truly understand what being a part of a family is all about.

In the past couple months, we have watched our little rag doll Isaac  blossom into a true, independent toddler. Exploring, learning, challenging, enjoying, and loving have all become words we use with him. He is truly becoming loving, truly accepting us, truly accepting his boundaries (ok, not ALL the time) and learning that he has a momma and daddy and siblings that will be here for him.

Isaiah has gained so much confidence, he has gained so much strength, body control, and tried so many new things, and loves it when he succeeds at something that 6 months ago he could not have done.

Our home is filled with lots of therapy type toys, tons of educational opportunities, and lots of daily learning happens, even in the midst of daily life.

I spend a lot of time trying to implement pt, ot and st (occupational, physical and speech therpay) into our day, but when you see success, and you see them come out of their shells, and you see the light come into their eyes, it is all worth the extra work and energy it takes to parent boys with special needs.

Blessings abound as we continue on this journey with special needs children.

Below are some pictures of a day in April when my mom came for a visit. She got a first hand experience of our "pre-school", as we played with stacking pegs and tubes and tents. Yes, it takes time, energy, and money to meet their needs and help them, but wow, what would we do without them?

Isaac shows Grandma how to stack (and throw) pegs

Isaiah and Tyler enjoy playing together too

Isaiah's eye-hand coordination is so much better, and the control he has for fine-motor skills has really improved

TA DA!!!

Our living room becomes a tent city when we give them time in their tunnels and ball tents! and they all love it

Thanks for stopping by for a tour of a day with 2 little boys with special needs!

Blessings

Chris

The Little Boys have official names!!

Tuesday, March 8, 2011-Readoption Day!!

Tuesday, March 8 was also another special day for our family this year.

Our 2 littles, Isaiah and Isaac, truly became Isaiah and Isaac. We had our readoption done in Wisconsin, and it feels really good to have all the stuff done that we need to do. EXCEPT FOR THE OFFICIAL SOCIAL SECURITY CARD NAME CHANGE!!

We keep waiting every day for the mail to bring our boys' new birth certificates, so I can scurry to La Crosse, again, and get their names changed, so we can then scurry to our accountant who is holding our taxes up for the new names on our tax return, so we can get our very nice adoption tax refund.

I don't think the day held much interest to either of them, although they did get a new teddy bear out of the deal. And we did some vehicle shopping, and we had lunch at Culvers. The eating out is definitely a highlight for both boys, as they love Culvers custard. Isaac is not talking yet, but his squeals/screams are heard throughout the house when dessert gets brought out, and he is equally loud when we are out in public, much to Nick and Ken's dismay!!

We have been home 10 months. I am sure we have a current record for the fastest readopt so far, within 9 months of coming home.

I look forward to our 1 year post placement report-there is just so much to say about each boy, they have each grown SOOO much, both physically, developmentally, and emotionally. It truly is a gift from God to receive such bundles of love and energy, and then have the privilege of raising them up for His kingdom.

May He find us faithful!!

Check back again, more updates to come throughout the week!!

Blessings

Chris

Our baby turns 2!!

Oh Happy Day

Well, I think so anyway-it is always bittersweet on the baby's first birthday at home, and it was no different yesterday when we celebrated with our little man, Isaac.

Despite chronic ear infections, 5 rounds of antibiotics, 2-yr molars trying to come in, and ear tubes going in on Wednesday, we had a great day with our son for his 2nd birthday.

Kendell baked cupcakes, and he sat on a chair and watched her frost them, and I just thought his view of the cakes was adorable-they were JUST out of reach, and did he try to get to them-it was quite the sight.!

Here he is, just can't wait to get his hands on them, but not too sure what to do with it when he does finally get one on his tray!!

Such a look-do you mean I get all of those???

He was the calmest he has been in days-didn't even try to touch them, in fact, didn't even want to touch one when it was finally time to eat them

everyone gets into the act of blowing out the candles

so cute, so tentative, we could not believe he did not just devour it-but he had to play with it first, and make a total mess of crumbs, then try to pick up the crumbs to eat it!

it is amazing how much better his fingers work now that he has been crawling on all 4's for a couple months-although that will be changing soon as he is starting to "stand" unassisted for a few seconds at a time-and no, this momma is NOT ready for that

finally, presenttime!!

OK Daddy, let's get this show on the road, it has to come out of that box NOW, and I will show you how to do it

what a great musical toy from Grandma and Grandpa-and he loves it too, but big brother Zaya has claimed it for the interim, as he can pull it all over the house and listen to it singing to him!!

They all got in on the action with his new Fisher Price Little People garage-we were all impressed with how Isaac actually played with it-all afternoon, and all evening-it was quite cute watching the 3 little boys playing together after supper last night-and a first for Isaac, he actually stayed with a task for more than a minute!!




everyone had to get into the act with the little people garage

We are so blessed to have such wonderful children, and to be able to celebrate Isaac's2nd birthday with him-he is definitely our motor man, and does he make noise when he wants to, and he will be walking soon, we are sure of that-he has come SOOOO far since coming home last June-it is hard to imagine the changes in him from our first view of him as that little rag doll in the orphanage, to the perpetual motion he is now.

How great is our God!!

Thanks for stopping by

Blessings

Chris

The Seal!!

We have a boy who can do something no one else can. He scoots around on the floor in "seek and destroy" mode, looking for his next victim, and when he finds something that meets with his satisfaction, he will put his hands down on the floor, push himself up like a half a push-up, grin from ear to ear, and then clap his feet together behind him,

and it is SOOOOO cute. The video does not do him justice, but I had to try to capture this at least once, before he learns to walk, and all these cute little baby ways are gone forever.

3 weeks home

I am so sorry this has taken soooooo long to get written. I can not believe we have had our sweet boys home for 3 weeks already. And how much has changed in such a short time.

We went from 2 hours of sleep a night to at least 5, both boys are sleeping through the night, except for thunder storms, which cause Isaiah to snuggle with us, and we love it-and Isaac's several teeth that are causing him some issues, usually all he needs is another bottle and a bit of tylenol, and he is set for a few more winks of sleep.

Isaac eats everything we eat, and wants nothing to do with baby food anymore. Chuck says when he is dreaming and fussing at night, he is having nightmares of nurses with rice congee coming after him!!

Isaiah is already trying to say Please and isaiah (sayah) and he moos and woofs and meows very well.

Isaac is loving all his freedom, and hates to be held for longer than absolutely necessary. The only time he really allows snuggling is right after sleep-he is using his saucer, and is actually standing in it already. Kendell has a few pictures of him standing next to the bathtub waiting for the water to fill, and he has been pulling himself up onto his knees, but he won't lift his little butt and actually crawl.

He sits for some time and plays, and can catch himself and right himself when he tips, if he wants to. So far, he prefers to scoot along on his tummy, but we think he is getting tired of life from that view, and is getting ready to move on to "toddler" life pretty soon.

We have a ped. cardialogist appt for Isaac next Friday. The Dr we saw 2 weeks ago for his sinus infection is from Taiwan and she looked over his heart meds and said, they are very strong, with not so nice side-effects, and she wants him seen asap-she hopes we can reduce the meds, or change them, and we are praying for healing and no need for the nasty tasting stuff anymore-he hates it!!

We decided to postpone developmental appointments for both boys for a couple months, and let Isaiah get used to a new language and new everything before they try to assess what he really is capable of. Isaac is getting so much stronger and has put on weight and is going into 12 month clothes already, so we are thrilled with his progress, and will monitor it, but are not "worried" at this time.

I am going to post this without photos at this time, and hopefully later today, during the next nap, I will get my "few" photos updated and added. I have been very slack in taking any, but I have enough to show what is going on in our crazy new life of 7 Waughtals.!!

Until later

Blessings

Chris

Isaac's first day-more photos

We have found propping him up between pillows helps him sit up by himself-he loves to bang the cups together, and tries stacking them up-drives his big brother crazy because he thinks they are HIS!!

What a little eater-he is literally eating anything and everything

Except his medicine-he is a master at holding it in his mouth and spitting it out

Not very exciting, but what a wonderfully normal day for baby and parents!!

Blessings

Chuck and Chris

May updates

YAYYY!!

photos of both boys together!!!

Isaac and his nurses

Isaac and his braces-gotta love that support

such a happy boy

We were very pleased to receive updated info and photos of our boys on May 3-the largest batch of photos we ever got
We were especially blessed to see pics of the 2 boys together. Cathwel has recently begun to get them together once a week in preparation for our picking them up.

I will give more updated info later, but wanted to get some pics out there for everyone to see!!

Blessings

Chris