To Find A Cure

When I was fresh out of high school, I was working in a center-based respite care program. Think daycare, but all the kids had significant disabilities. This was before the ADA went into affect and segregation of those with differences was allowed.

One of the children who came to our care facility several times per week was a boy I'll call Jack. He was 6 years old at the time.

Unable to sit unsupported, Jack spent most of his time laying down either on a beanbag chair (his favorite spot) or the big comfy couch we had in the room. Sitting in a wheelchair was extremely difficult for him, because his arms and legs would flail spastically in all directions. Holding him on my lap was physically exhausting for both of us. With Jack sitting around all day I felt bad he and nothing to do. He had to be bored! I used PVC pipe and build a big-kid sized play gym, of sorts. I hung various toys from it so he at least had something to look at, and several times throughout the day I would change out the toys based on whether he was lying on the couch or sitting in the beanbag. If only we'd had iPads then, or communication devices like kids have now!

Jack was a mostly happy kid, but he wasn't able to talk. He would occasionally get a sound out but nothing I could make sense of. Sometimes I would turn around to see a tear slowly making its way down his cheek.

My heart broke for Jack. You see, just a couple years before, Jack had been a happy, healthy 4 year old running around like any other kid. He had already learned how to ride a bike. He could almost tie his shoes. Although he probably had small symptoms earlier, when he was in Kindergarten his parents noticed them for the first time: the involuntary hand movements, facial twitches, then the stumbling.

Jack had Juvenile Huntington's Disease. Now, two years later, he sat in my classroom in a beanbag chair, arms and legs flailing uncontrollably, unable to say a single word, with a tear running down his cheek.

Jack continued to decline died just before his 8th birthday.

Juvenile Huntington's Disease is the same as Huntington's Disease but it is found in a person before the age of 20. It is an inherited genetic disease that causes progressive degeneration of nerve cells in the brain. If one of your parents has HD, you have a 50/50 chance of of developing Huntington's Disease. There is a predictive genetic test that can determine whether or not a person has the gene, but it cannot predict when the person will start developing symptoms. Some people who are at risk elect to not have the test done for a variety of reasons.

Meet Brayden

I have known Brayden's mom Jill and her husband Neil for somewhere around 25 years now. She and her husband Neil adopted Brayden when he was a baby. When he was two he was diagnosed with Autism. He has overcome a lot of things in his life. He is an amazing kid who has learned to function in a world where he's not always very comfortable.

Jill and Neil went on to adopt Rahni

Brayden's family has always maintained contact with his birth mom. A few years ago she was diagnosed with Huntington's Disease. Because she can no longer care for herself, she now lives in a group home for people living with HD.

From my friend Jill,

Brayden's birthmother, "M", has been diagnosed with HD and this puts Brayden at a 50% risk of also being diagnosed with HD. Sadly, he already has symptoms that look very much like HD. We have decided not to have him tested yet because once we test... there is no turning back. In our heart of hearts we know he has this devastating disease... but we aren't ready for that reality.  

HD is a 'family disease', not just because it is inherited, but because it profoundly affects the entire family... emotionally, socially and financially. The is no effective treatment or cure for HD... we are fighting against time :( 

A cure needs to be found... it needs to be found so Brayden can be assured that Huntington's disease won't rob him of his ability to LIVE a full LIFE.

Brayden has asked us if he has this or could have it... we simply answered him with, "Let mom and dad do the worrying about that" and for now.... that answer works for him. We hope to fi nd a cure before Brayden ever has to worry about it too :(  So for now... we don't talk about in front of Brayden and we don't really talk to him about it other than the fact that he knows his birthmother has it and she is going to die from the complications of it in the too near future.

We need a cure. Our son needs a cure. Please consider a tax deductible donation to help us with our goal... to help find a cure... to help our son to never have to have this be his reality.

To watch any family member, particularly your child, suffer through a slow and debilitating process such as JHD is something no parent wants to experience. If you would like to help find a cure, so kids like Brayden never have to face this as their reality, please visit Jill's fundraising page. 

This Man

Nearly 10 years ago I had an online conversation with this guy named Dean. We were on the popular dating site, Match.com. We chatted for a bit but he's not much of a typist so he asked if he could call me instead.

I put a lot of weight on those first phone calls. If I had didn't like their voice or I had to carry the conversation that was usually the last I had contact with them. But this guy Dean, he could hold his own. We talked about our kids, our love of motorcycles, and...well...we talked for quite awhile!

The next day he called asking if I'd like to meet him for dinner. On August 22nd, 2003 I arrived at the agreed upon restaurant and passed a pretty Harley parked in front. I wondered if it was his. I found him sitting at the bar. We chatted for hours. The next night we met again, and again that bike was parked out front. At some point I asked if that was his bike and he confirmed it was. We went on a ride.

End of story.

Only it's not really, is it? When I met Dean he was a divorced dad of one son. I brought with me Angela and "the big boys". Dean had no idea what Down syndrome was, so he went home and did some reading online. He decided he'd give it a try.

God brought both Dean and I through a lot of things in life before we ever met one another. Without going through those events we wouldn't have been prepared for one another.

God knew.
And now look at this amazing man. My hero. My best friend. The man who CHOSE to be father to every one of our kids.

Blast from the Past

I was looking for some pictures tonight, and ran across this video of Axel, just a couple weeks after he came home. Good LORD was he the most adorable little boy! Now he's nearly a teenager.

So here's Axel and Angela, 2 1/2 years ago.

Don't

Don't lick your hand.

Don't lick the car.

Don't lick your hand.

Don't lick the tree.

Don't lick your hand.

Don't like the sidewalk.

Don't lick your hand.

Don't lick the window.

Don't lick your hand.

Don't lick your feet.

Don't lick your hand.

Don't lick the refrigerator.

Don't lick your hand.

Don't lick the dog.

Don't lick your hand.

Don't lick the chair leg.

Don't lick your hand.

Don't lick the bedpost.

Don't lick your hand.

Don't lick MY toothbrush.

Don't lick your hand.

Don't lick the toothpaste tube.

Don't lick your hand.

Don't lick the comb.

For God SAKE please DON'T LICK YOUR HAND when I put soap on it!

All said within the last two hours.

Hearing Aids

Last year while I was in Serbia for Asher's adoption, Angela lost one of her hearing aids. *Someone*, who shall remain nameless but who was the responsible adult at home with the kids, didn't even notice that one was missing until I got home and pointed it out. AHEM! Anyway, we waited over a year for her to get a new pair.  She hasn't been completely without hearing aids, since she had hearing aids plus and FM system at school. She could have worn one hearing aid but if you've ever had a problem with hearing out of one ear you know that it's very difficult to localize sound when you only hear out of one side.

Anyway, we finally got her new aids!

Years ago, when Angela was 12 months old, she got her first set of hearing aids. I was still new to this world of differences and didn't want anything that would make Angela stand out more than she already did, so I chose skin-colored aids with skin colored ear molds. A few years later we switched to dark purple ear molds because they're easier to find when they come off the hearing aids! (and note to those who are new to hearing aid usage, DOGS love hearing aid ear molds too, and eventually insurance stops paying for them when your dog eats them. ;-) 

When Angela got a bit older I started letting her pick the color of her ear molds. She's had lots of different colors over the years; always bright and and bold! This year, since she is 17, I grit my teeth and swallowed my tendency to take control and let her pick her own hearing aids. I really wanted to encourage her to choose something less..umm...flashy, but I held my tongue. After all SHE has to wear them, not me. And really, I've been letting her choose her glasses for a couple of years now. 

Purple hearing aids on the left and purple with SPARKLES

 ear molds (the part that goes in the ear) on the right. 

To give you an idea of size, the ear molds are about the size of a nickel.

Checking the fit of the ear molds and cutting the tubing to the right length.

Angela has teeny tiny ears (the size of a 6 month old baby!) 

Her new aids are so tiny they hide right behind her ears. 

The wires lead to the computer program.

Years ago hearing aids were only able to amplify ALL sounds, so even sounds a person could hear well without aids were made louder, making hearing aids sometimes not very pleasant. About 8 years ago digital hearing aids came on the market. The computer chips in them are much smaller, allowing for smaller hearing aids. Here you see black wires connecting Angela's aids to the computer. The computer programs the hearing aids to amplify ONLY the sounds 

Angela can't hear. If her hearing changes (which it has in the last year) we can reprogram the aids accordingly. 10 years ago we would have had to buy entirely new hearing aids. 

The Audiologist ran some test sounds into the aids to see if Angela 

could hear them and make sure they were programmed correctly. 

Into the booth we go! Time to see how much better 

Angela hears with her aids than she does without.

Our Audiologist, Wendy, has been part of our family for 10 years now. 

We love her! Thanks Wendy!

Summer: Day 4

Today is Thursday, day four of our summer. It rained the first 2 1/2 days. Here is what I made today.

I love my children. I truly do. They are very busy people and I still love them. Earlier in the week I came up with a schedule for each day. I did it for several reasons. 1) so I don't sit on my computer all day because I can see just how much needs to get done and 2) because I need to see there is an end to every day 3) so Angela doesn't sit on the TV all day like she tried to do last summer and 4) so Dean can see that I get lots of stuff done each day even when there is no school.

The schedule looks like this:

1. 8:00    Breakfast/get dressed

2. 9:00    Make beds/pick up living room/load of laundry

3. 9:30    all TV’s OFF

4. 9:45   Calendar

5. 10:00   recess OUTSIDE/free time (rain)

6. 11:00    Activity with mom/dad

7. 12:00    lunch

8. 12:30   recess OUTSIDE

9. 1:30    quiet time (reading books, listening to music, resting)

10. 2:30    recess OUTSIDE

11. 3:30   writing time

12. 4:00   FREE TIME

Yep! Day four and there are already problems with the schedule. The first thing is item #1 which is supposed to happen at 8:00 a.m.  They kids may be up then, but I am not! Oh don't worry, they're not alone, because Dean has been up a couple of hours at that point but he's not following the schedule. No, I have not been up before 8:30 because Dean has been generous enough to let me sleep in every morning. Plus, I've had this horrible ear infection and am blissfully sleeping in the bedroom because I can't hear a dang thing and am oblivious to the noises coming from the rest of the house.

I am singing praises to God for ear infections.

Item #2 at 9:00 is now item #1, and the only way to catch up is to skip all or part of #2.  I am skipping the laundry part. This became a problem on today, day four, when I realized the little boys had no clean underwear.

#3 is really and truly happening and nobody is even arguing with me about it. Of course, it's only happened on the days there has been no rain which has only been 1 1/2 days. Today was one of them. Still. Nobody complained.

#4. We have done this three days. It has been really helpful, actually! I have included the events of the day which this week have included two doctors appointments, two afternoons of therapy. The two "fun" things I planned this week haven't happened so far because of the rain. I have hopes for tomorrow, but I don't tell my kids WHAT we're doing, only that we're doing "something" so that I can change a really fun thing out for something lame should the need arise. However, today I added a new rule that Dean must participate on calendar time because yesterday he was caught off guard. "I thought the doctor appointment was next week on Weds." he said. "There is one on Weds. There is one today too. And Tuesday. And the following Monday."

#5 is mostly happening, though not until about 10:30. So far there have been no broken limbs or stitches, but again, this is only day 4. I predict Asher will be the first to see the inside of the ER for an injury related visit. I predict Abel will be the cause of the visit.

#6 Pretty sure I was high when I put that in there.

#7. Lunch. Its hard to screw up lunch, but somehow I manage.

#8. Recess outside. It's happening. Everyone is happy. Thank you Jesus. My three adopted kids are still borderline Vit D deficient (so is most of the rest of the population of Minnesota) so they MUST get outside. I had envisioned that they would play outside while I sat on my lounge chair with a book and enjoyed their antics. See my notes for #6.

#9. Although on Mon, Weds and Fri this is not happening until around 2:30, you can be darned sure it is happening. If it didn't all my hair would have already fallen out on day four of summer.

#10. "Recess" outside. For some reason if you say, "Go OUTSIDE already!" they protest, but if you call it "recess" they can hardly wait to get out that door! Recess it is.

#11. We did this. Once. It was on Tuesday. Dean came up and gave me a hug in the middle of it so I remember.

#12. Free time. This is so I can pretend to make dinner.

So that's what our day looks like. Now, let me tell you about things in general. You may notice the schedule does not allow time for me to take a shower. Yeah, on Tues and Thurs the boys have therapy at 2:00. On Tuesday this week we were on our way to the van when I realized I was still in my pajamas and hadn't even brushed my hair yet, much less taken a shower.

Our days have disappeared with lightning speed. It doesn't help that we've had a lot of appointments, plus track and softball three nights a week.  I think we only have one week of doctor appointments left. Next week brings the state Special Olympics Summer Games, Angela leaves for camp, two doctor appointments, and 21 meals to be served to the kids.

June, July and August

Dear June, July and August,

Dear June,

Each spring I wait anxiously for your arrival. You bring with you warmer weather, sunshine and a much-needed change in our routine when I'm starting to run on fumes. But this year June? This year you arrived with nothing but rain, rain and more rain. You brought an insane schedule I could barely keep up with. Now that we are 10 days in things are settling down a little bit! Still, the evenings are so busy that you're loosing your place as my favorite month of the year.

July! I can't wait for you to get here! We have big things planned for you this year, July. Lots of summer camp for Angela, a trip to Denver, Colorado for the National Down Syndrome Congress convention, not to mention warm weather  (please don't bring the 100* stuff with you. I don't have the patience for it this year.) and fun times for the boys! You might just be my new favorite month.

Oh August. I think you and I are going to have a love/hate relationship. By the time you arrive, all the extra-curricular sports will be done. Our evenings will be free. Camp and traveling will be memories. Even with that, you're going to keep us busy, aren't you August? Your lack of scheduled activities leaves us time to get some medical things scheduled that will require recovery time before school starts in September. I believe all four of the AAAA's will be seeing the inside of an operating room during your time with us.

To my favorite three months of the year, June, July and August, thank you for finally getting here. Please remind me how much I said I love you when I'm complaining about you later!

It is Summer!

Friday was the last day of school for Angela. (the other boys were done earlier in the week.) It has been raining here in Minnesota for two weeks now, including this past weekend. Well, Saturday was without drips for a few hours; just enough to squeeze in Dean's family reunion.

I have always been one who dreaded the kids' summer vacation from school. I function much better when there is a schedule, or somewhere we have to be, etc. When my big kids were young, summer came with the rule "TV is turned off at 10:00 a.m." We lived in a small town then, and the kids spent most of the morning at the city pool just a block away. That sleep little town still had a noon whistle which prompted the closing of the pool. All the kids in town would hop on their bikes, racing home to eat lunch. The afternoons were spent with more pool time or biking around town getting into some kind of trouble. Everyone watched out for everyone else's kids. It was truly a "village". I miss that little town! When Angela in June of 1996, she was in the NICU 70 miles away and I was recovering from a c-section. That summer was really tough to keep track of the boys! I finally made an "in/out" board, that included a place to write down the phone number of whatever friend's house they were at.

Now we live in a suburb. There isn't really a town to ride around on their bikes, and...well...only one of mine has a bike, and she only rides it in parking lots with no outlets to busy streets! LOL I was anxious for school to end this year. Abel needs playmates and I needed a break from our busy school and extra curricular schedule to just settle in a bit.

So today, Monday June 10th, it is finally "summer" around here!  I came up with a schedule which started this morning. It's 1:00, the kids just finished eating lunch and there has been no pestering me about the TV or iPad usage. Unfortunately, although it isn't raining today, our yard is a mud pit so playing in the back yard isn't an option. Instead we're getting ready to take a long walk then coming home for "quiet time" which includes reading books, listening to music, or just...you know...resting! (ok, the resting thing is for me.)

One thing my new schedule didn't include was time for me to take a shower. Oops! We will need to iron this out a bit, I think.

*note, Angela is not in these pictures because she didn't want to be.*

Dear Department of Homeland Security

Dear Department of Homeland Security
Attn: Passport Authority

It would be very helpful to myself, and I am sure many other citizens of the United States, if your departments would please communicate with one another.

In February 2013 I submitted an application for my son Axel's US passport. We would be traveling to Serbia to complete an adoption, and while there would be meeting with his birth family. They were anxious to see him in real life. In addition there were many people in Serbia who were excited to see this young man who left their country 2 1/2 years ago and had learned so much.

Upon submitting my adoption documents, the clerk in the passport office didn't think they would be approved. They were the only documents I had for our adoption. A few weeks later I received a letter from you with a list of additional documents you wanted to see. The only place for me to get those documents is in Serbia. Fortunately for me I knew who to call in Serbia to obtain another set of documents. There was another family traveling at the time so a group of people rushed around in Serbia trying to get the documents completed so the other family could carry the documents home with them. Unfortunately it couldn't be done fast enough.   I told my contact to just hold the documents for us, and I would get them when we traveled. We would leave Axel home and bring him and, if we were lucky, bring him another time.

This week I have been anxiously waiting for my newest son's Certificate of Citizenship to arrive, which is needed for me to obtain his social security number. Your website states I should receive it by day 50. Today is day 42 so it should be here any time. Imagine my surprise when I opened my mailbox to find an envelope from your office which contained NOT my new son's CoC, but Axel's US Passport! The very passport you rejected his documents for and told me he couldn't have. The very passport that was needed for what very well could be a once-in-lifetime opportunity to meet his birth family. Not to mention the trouble about 10 other people in Serbia went to just to get me a new set of adoption documents.

If only one department knew what the other was doing.

Make A Joyful Noise

Psalm 98: 4-6

4 Make a joyful noise to the Lord, all the earth;break forth into joyous sound and sing praises!5 Sing praises to the Lord with the lyre,with the lyre and the sound of melody!6 With Trumpets and the sound of the hornMake a joyful noise before the King, the Lord!

Tonight was Angela's spring choir concert. I have to tell you, these choir concerts are bitter sweet for me. I waffle from loving all she is doing, then moments later having tears streaming down my face.

Let me explain....

When I was pregnant with Angela, like all moms I had hopes and dreams. Because of the very difficult pregnancy I had many ultrasounds and knew I was having a girl. I didn't know anything else. I am not a person who enjoys shopping much, but I had this recurring dream of shoe shopping with a long-haired little girl who looked just like me. (Funny, it was always about shoes; the most difficult piece of clothing to buy for Angela.) My point is, I had these dreams of where we would be at this time of our lives, and these choir concerts are a time when it is  evident to me haven't arrived and probably never will.. There are a lot of things in life Angela will never do that all her typical peers are doing, and they're getting awarded for doing them....at the choir concerts.

I never did a blog post about the Christmas concert and what happened to make me want to crawl under a chair in embarrasement. I'm sure most of the other 1000 parents in the audience didn't have a clue what was happening, but I did. Tonight I was prepared to avoid a repeat of the Christmas concert. I bought Angela three new pairs of shoes (two will be returned) in an attempt to find a pair that were not only cute and matched her dress, but that she could also walk in safely. I bought two dresses for her to try, hoping one would be appropriate for her. Because she is so tiny I have to buy dresses for her in the little girls department. (Stuff in the women's petites or Juniors are too broad in the shoulders/chest which cause..ummm..exposure.) I hate putting Angela in dresses. It's not socially safe for her to be in a dress. Things can happen, like when she does "the worm" on the floor.....on her back....in a dress. Little girl dresses on my 17 year old daughter.

When we arrive at school, it hits me.

The beautiful high school girls in their stylish dresses, the fancy shoes, the hair, the make up. It's not Angela. Its just not where she is right now. The other girls, they greet one another with squeals of delight. They give Angela a half-wave on their way to greet another friend with a hug and peels of laughter.

But Angela sees her true friend coming. Another student from the special ed. program. Their pleasure in seeing one another is genuine, not forced. They are real friends.

Angela is happy.

Why do I feel like I'm going to cry?

I will not cry. I will not cry. I will not cry.

I leave Angela with the rest of the choir members and find my seat in the auditorium with one of the other parents. While we're waiting for the performances to start I look through the program and see there will be a lot of awards tonight. It's the last concert for the graduating seniors and there will be a little send off. My chest tightens at the thought of these awards being given out because I know...I know there won't be an award for Angela.

We listen to the first couple of choirs. Our school is highly competitive in the arts, music included. These are competitive choirs. They are amazing.

It's time for Angela's choir. This group of young women have more courage than any other students in that school. They LOVE to sing. They sing with everything they've got and you can pick out the voice of every single girl. Every. Single. One. This is not a competitive choir.

As the choir members move onto stage to take their places along the risers, I hear the people behind me talking. "See that tiny little girl with the white top?"

I brace myself. I swear, if there is one derogatory comment made about this choir.... God please not tonight! My friend nudges me. She heard the comment too.

I listen closer, "See her? She has Down syndrome. She's always in front and she's absolutely adorable. She LOVES to sing and has so much fun! Watch her. She's always trying to spice it up a bit."

Is that it? Is that what everyone else sees of my girl? Because in my head I think they're praying this part of the concert would hurry up and end, because it can be a bit painful to the ear. And in my head, this 'cute' stuff Angela does was 'cute' when she was 6, but is not so cute at 17! I guess its just me, because at least those around me, who don't know I'm her mother, are getting a kick out of Angela on stage.

Angela does, indeed, like to spice things up! Angela loves songs that get her moving and shaking...all over...and if they aren't singing those kinds of songs, well she doesn't really care. She'll make them that way. On this night Angela stood on the top riser, screwing up her face as she belted out HER OWN lyrics at the top of her lungs, all the while dancing away to her own rhythm. SHE was having a blast!

After all the choirs had performed the awards given out. I had to wonder...when? When will it be Angela's turn to receive an award for what she loves doing most?  Not everyone gets awards. I get that. Angela gets that. But like every other kid she HOPES that this will be her time. As her mother, I pray she gets her time. The kids who are getting awards have done great, even amazing things with their voices to earn those awards. They have dedicated countless hours to rehearsals and voice lessons. Angela spends countless hours practicing too...in our basement...with the door closed so we can't hear her.

Before I know it, it is time to recognize the graduating Seniors. There is a slide show of "then and now"  baby pictures of those graduating. In my head I envision Angela's early baby pictures - of her with tubes and wires, laying under a glowing light in the hospital NICU. Next, all 50+ students are called onto the stage, one by one, as it's announced where they will be going next year, and what their long-term goal is. "Sally Sue Smith. She will be attending Harvard Law School and hopes to practice criminal law."

There were two kids who stood out to me. One is a young man I've seen around for several years. I can't remember what college he was planning to attend in the fall, but he wants to major in Special Education. Another young lady who wants to become and Audiologist and Speech Pathologist. I cried when I heard each of them. I couldn't help but be thankful some of these kids had been touched by "our kids". I wanted to find that young man and hug him; to tell him "Thank you!". I wanted to find his mother, to hug her and say "Thank you!" for raising such a cool young man!

My mind went other directions. In two years Angela will be graduating. She will have her named called and she will walk up on that stage, accepting a red rose from her choir director. Will they have to say "Angela Spring, She plans on singing Karaoke in her basement, and perfecting the Star Spangled Banner. She would like to be a neurosurgeon." But really, where will Angela be going when she graduates? What will she be doing for a job? While Angela's future is very bright, on this particular night it stood out to me just how uncertain things are.

Being a mom to Angela isn't always easy. Some things, like this choir concert, are such "normal" life experiences that have a way of turning on me. It's these "normal" events that point out to me just how far we are from that. And yet, it isn't about me, is it? It's about this smiling, glowing, confident young lady who stands ready to take on the world. Isn't that exactly what the goal has been all along? 

1 Month Home!

Can you believe that we've been home with Abel for a whole month? We came home on April 27th. In many ways this month has been exhausting, but I always feel this way when we come home. It takes some adjusting to add an older, traumatized and very mobile kid to the routine of the household.

The first week home, mornings were very stressful. We have a pretty set morning routine and Abel didn't know how it worked. When I was trying to get Angela eating and out the door, Abel was at the table fretting about weather or not he was going to be fed, grabbing everything within reach, etc. Then, by the time the boys got up Abel was done eating which meant he needed to be watched very closely. It was a bit chaotic and made me feel like I was always one step behind. But now, one month down the road, we have our new morning routine! Angela gets up, dressed and to the table. While she's eating Dean wakes the boys up. By the time all the boys are done using the bathroom Angela is ready to get in there and get teeth/hair/face done. (We do have another bathroom downstairs but Angela needs help with personal hygeine in the morning and it's easier to use the main floor bathroom) By the time Angela is ready to leave the boys are eating breakfast. Then its off to get their teeth/hair/faces done, Axel leaves and the little boys get dressed. Dean walks Asher to the bus and Abel *always* goes along! The whole morning process, from the time I get Angela up in the morning until Asher is ready to leave takes one hour. Once he's ready the little boys have about 1/2 hour to watch a Signing Time video. We could absolutely do the routine faster if we needed to, but right now our mornings have a nice flow and nobody is stressed out our being rushed out the door. Well, unless they are causing some kind of problem as TEENAGERS sometimes do!

When we first came home we couldn't take our eyes off Abel for even a second. He has this thing about wanting to move anything heavy just for the sake of adult reaction. I'm talking things like couches, dining room tables or heavy dressers (which happen to be bolted to the wall!) In the institution he would do this to get the caregivers attention. It worked great because they would come running and give him whatever he wanted. Yes, it gets us to come to, only to put him in the time-out spot and remove all attention. I am happy to say we don't see this behavior anymore unless he is extremely stressed, which I'll talk about in a minute.

When we came home Abel was in diapers 27/7. I really don't understand this at all. Why the caregivers in the institution would want to change diapers on a 10 year old boy is beyond me! It took one weekend and Abel was completely out of diapers with only an occasional accident. Now accidents are extremely rare and we don't have to tell him to go anymore because he tells us. He is dry at night and he has yet to wet the bed. YAY ABEL!

We have started making the rounds to all the doctors. He has seen our regular pediatrician and had 17 vials of blood drawn which required a small army to hold him down. I still need to collect stool samples and bring those in. At the time of his medical appointment in Serbia he weighed 48 lbs. Now he is 53 lb and rock solid. Seriously this kid is all muscle. He is only about 1/2 in taller than Asher but is 10 lbs heavier. I expect he's going to shoot up very quickly so, although he and Asher are wearing the same size clothes, I'm keeping all Axel's outgrown clothes handy. ;-)

Last week we started doing assessments for school. With both Axel and Asher I waited until they'd been home around 3 months before doing this. Unfortunately they had lost a lot of their Serbian by then  so we couldn't really get an accurate picture of what they knew. Also, if we didn't get it done now we'd have to wait until fall, which would mean he wouldn't start school until November or December. I decided to get Abel testing done now so he can start school in October (more on that later.) Anyway, when we arrived at the office for testing, Abel was pretty cooperative. We were working with an ST who has known our family for 10 years, working with Angela when we first moved here and Angela was on home-bound school services. She also did both Axel and Asher's assessments when they were adopted. So here comes Abel, fairly cooperative and just a tiny bit silly. We did a few things as we waited for the translator to come. I was happy to see the face of "I." come in. She translated for Asher when he had his surgery and has done some document translation for me as well. She's very nice. Anyway, she entered the room and introduced herself. Abel stared at her a minute, then his eyes glazed over. He gave his manic laugh and the craziness began!!!! He started trying to flip the table over, threw every piece of testing material, hitting, kicking, screaming. He was absolutely manic!!! All of this was done while he was laughing.

We can only guess what was going through his mind. Believe me, we have thought of every possibility. We were NOT in a school setting, so this shouldn't have triggered the whole "being in an institutional setting" thing. We were in a small room without noise or distractions. Before the translator arrived he was fine. When he heard the Serbian is when the trouble started. Dean and I decided that Abel's hearing Serbian triggered the behavior he always displayed in the institution. Think about it: Abel wasn't out in the community getting a wide variety of experiences. In Serbia he was a boy who did what he wanted, when he wanted. When he didn't want to do something he destroyed the place. That's what he was doing during the assessment. He heard Serbian and went right back to the little boy we left in Serbia. This screaming, throwing, kicking, hitting, destroying everything went on four AN HOUR before I came to my senses. I pulled out the crackers I had stashed in my purse. The interpreter told him "You do x, you get the cracker." That was all we needed to do! For the next 1/2 hour he did pretty much everything we requested of him then turned to me with his mouth open for a bite of cracker. We were able to find out that, in Serbian, he knows his colors, shapes, the letters of his Serbian name, he can short shapes by size and he can copy horizontal and vertical lines being drawn. I'm a bit nervous about him starting school in the fall, but our district is great in working with me to ease the boys into the setting slowly.

When the assessment was done Abel did NOT return back to normal. He spent the entire day in screaming fits of rage. It was a very physically and emotionally difficult day. I did decide that although we have translators arranged for a couple upcoming visits, I'm canceling the translators. I just can't do that to him, or us, again.

Sleeping is not going so great. I know he needs his tonsils and adenoids out, because they're huge. I have heard him choking awake many times! But he does other things too, more of general sleep disturbance. He rocks most of the night, either sitting up or log rolling. He also wakes up and tries to wander the house around 2:00 a.m. every night. We send him back to bed where he just starts rocking again. Sleep disturbances are very common among kids with DS. Without medication Angela stays awake for DAYS at a time, only sleeping a few minutes here and there. My guess is once  his T&A are removed we'll be doing a sleep study to find out what's up.

Abel and Asher continue to be great buddies! As I'm writing this, they're standing in front of me playing a little game of copy-cat. Abel is the leader. ;-) The giggles are a joy to hear! Oh yes, sometimes it disintegrates into wrestling. LOL

On the communication front, Abel picks up signs as fast as I can remember to show him new ones! He doesn't really like to watch Signing Time yet, but little by little he's liking it. He's signing A LOT, and if he can't think of a sign for something he just makes it up. He often requests things that are out of sight, he asks if he can put his shoes on (in hopes we'll take him somewhere if he does!). He asks to eat, and drink. He asks for more of whatever we're having.

Abel has come so far in just one month! It hasn't been easy, that's for sure. It is built into him to try to manipulate the environment in negative ways to get what he wants. We have 10 years of that to undo, and it's going to take a long time. There are many days I have to pray, asking God to show me things from Abel's perspective so I can figure out how to manage whatever the problem is. Believe me, there are many times I screw up. There are lots of tricky parenting situations every day. Then I remind myself that these aren't just "parenting situations". These are "healing and therapy" sessions that most parents have never seen, much less had to deal with themselves. Most of our support system has no idea  what we're talking about and I'm sure we come across as overly strict by not allowing certain things. Sometimes explaining the hows and whys is more exhausting than dealing with the issues themselves.

At The Park

Although this weekend (Memorial weekend) is cold and gloomy, last weekend was beautiful! We've been scrambling to get some much-needed yard work done but took a break to visit the neighborhood park. Angela was really sick so she stayed home but the boys had a blast!

Axel is deathly afraid of heights, or climbing structures he's not familiar with. He was being very brave on this day! Last year he wouldn't climb this thing.

Darned rocks in the shoes.

Who's this cool dude hanging out on the slide?

Asher fears nothing, pretty much!

I thought he would stop and go back down when the ladder turned. But no, he kept going.

Abel was determined to get this thing figured out.

Mom! Show me how you did that again.

Somehow this just isn't working.

Swinging monkeys.

 Axel got brave and tried another one!

Abel the strong man.

I found another monkey on the dome.

He wasn't alone for long.

Abel isn't about to be left out of the fun.