Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, April 30, 2012

The Looks We Get

Angela, Axel, Asher and I walk into Target together. Angela usually takes the lead, Asher holds my hand and Axel walks about 10 feet behind me. I constantly say things like, "Angela, wait for the rest of us. Can you walk with us? Axel, you need to walk faster. Can you walk with me? Asher, tongue in your mouth."

You walk in right behind us. As I pull a cart from those parked at the entry, I turn to check the whereabouts of my kids and catch your eye. I can see you trying to figure us out. Your eyes first go to Angela who is probably in a mood and you can feel it,  then they scan to Axel who looks a little bit lost. He sees you and says, "Hi!" Your eyes then move to Asher...does he or doesn't he? There is something different about him but you can't quite decide what it is.

Once you've checked over my kids your eyes meet mine. I can see your questions, mostly because they've been asked of me plenty of times. Let me answer the 20 most common questions for you, in no particular order.

1) Yes they're all ours.

2) No, we don't have a group home. (this one cracks me up as I can only imagine the questions that get asked of my friends who have far more kids with special needs than I do!)

3) Yes, they all of Down syndrome.

4) Yes, I'm sure.

5) Yes, even Asher.

6) Yes, really.

7) No, I don't have any trouble "managing" all three of them alone. We don't have any trouble parenting them either.

8) Yes, we knew they had Down syndrome when we adopted them.

9) Yes, we chose them based on that diagnosis.

10) No we are not special parents.

11)  Yes, you could do it if that's what God wanted you to do.

12) No there is no cure for "it".

13) Yes she is really 15. Yes he's really 11, and yes, he is REALLY 7. (Why would I make this up?)

14) No, we don't know if they will ever talk.

15) I don't know what he just signed to you because he made it up. He's a genius like that.

16) They came from Serbia.

17) Serbia, not to be confused with Syria or Siberia.

18) No, they did not know English when we adopted them. See #17.

19) Yes, I had to travel to Serbia to get them.

20) The place God has waiting for us in heaven is no more special than yours. It was planned before we was born, just as yours was.




Sunday, April 29, 2012

Pre-Adoption Straight Talk

People frequently contact me with questions about adopting a child with special needs. I'm thrilled there are so many people who are interested in not only adding to their family, but specifically a child with special needs. Here are some things to consider when you're making your decision. This post is not meant to scare you out of adopting, or to intimidate you. Yes, I'll be pointing out many of the negatives in adoption. This post is meant to give you things to think about before adopting, laying the groundwork to a successful adoption experience.

Experience: Many people who adopt kids with Down syndrome or other special needs already have biological children with similar diagnosis or medical needs. They "get" what it's all about and have determined they can manage doing it all again. If your family is new to the world of special needs you need to do some research! If you're looking to adopt a child with Down syndrome, there are many resources on the net, like the National Down Syndrome Society , the National Association for Down Syndrome  or the  National Down Syndrome Congress where you can read through some of the common medical issues. (You can find similar organizations for just about any disability group or medical condition.) You can also read through the 2011 American Academy of Pediatrics abstract on Health Supervision for Children with Down syndrome, which will give you a a pretty good idea of what's involved for routine care for kids with DS. Ok, now that you've got your reading done, it's time to head to some events! Check out the calendar for your state or local level Down syndrome associations to see what's gong on. Meet the families and self advocates who live with Down syndrome every day. You could also attend a Special Olympics even near you. ENJOY your time!

Location: Ok, I have to say this one really gets to me. Several times, particularly in the past year, I've seen families adopt kids who need a high level of medical care but they live in very rural areas making access to medical specialists difficult. If you don't mind doing all the driving for what can become many trips, for many years, that's awesome! Unfortunately I've seen a few families recently who have denied their child necessary medical care because it's too far away and they don't like to drive in the big city. Really? You knew this going into the adoption! Checking out the logistics needed before you adopt can save you a lot of stress later down the road. If there is an international adoption clinic near you, they can help you locate specialists who are used to dealing with the unique care needed for many post-institutionalized children. Check out the children's hospitals near you. Do they have specialties? (we have several children's hospitals near us, one is the "go to" place for heart defects, another for orthopedic treatment, craniofacial care, etc.) If you have a child identified, are there specialists near you who are suited to meet the needs of that child? Are they taking new patients?

Health Insurance: What kind of health insurance coverage do you have? Will it cover all the things your new child may need? What is the yearly deductible? Is there a lifetime max? If so, how much is it? Ask families of children who have similar needs how much medical care of for their children costs.

Schools: Please, before you adopt, check out your local school district. A district may be awesome for typically developing children, but really leave a lot to be desired when it comes to special education services! Look into the different options of inclusion, mainstreaming, or self-contained classrooms. What is the philosophy of the district you're in? What do YOU want for your child? Will your child be able to attend your neighborhood school or will he/she need to be bussed to the other side of the city our county? Keep in mind that most services (PT/OT/ST) provided in school are the bare minimum and you may find you need to add private services. Are they available in your area? You may be planning on homeschooling your new addition, only to find out his or her educational needs are beyond you. Will you be comfortable seeking public education if that happens? If not, what are your other options?

Advocating: Are you prepared to advocate for your child to make sure his or her medical and educational needs are met even when you've been told "no" by the professionals for various things? Are you prepared to speak up the first time your child is called a horrible name, is mocked or made fun of?

Support system: What kind of support system do you have in place? How does your extended family feel about the concept of you adopting a child with special needs? Many say, "It doesn't matter what they think." only to find when it really happens to them, it DOES matter, and it hurts to say goodbye to family and/or good friends. All parents need a break from their child. Do you have anyone who can care for your child(ren) so you can get that break?

Time: When you bring your new child home, how much time will you have? If both parents work full-time, are you able to take maternity/paternity leave to be home with your new child during the bonding process? If you need to seek childcare, are there places near you that have the ability to care for your child's needs, including emotional/social/medical?  Bringing home your new child, particularly a child with Down syndrome or other significant needs, requires a lot of medical appointments right off the bat to sort out all the things which have not been addressed until now. (Asher, who only had a few issues, had 16 doctor appointments in the first 8 weeks home, a surgery w/hospital stay at 3 months, and a jazillion follow up appointments. Axel had no known medical issues other than needing dental work, yet ended up having a life-threatening condition requiring MAJOR surgery out of state, followed by months in a halo, and we're still doing follow-up appointments out of state.)

Are you prepared in your head?: Are you prepared to care for a child whom you have no biological connection to? Are you prepared to NOT love the child when he/she is placed in your lap? How do you feel when the most annoying neighbor kid visits your house? Some days your newly adopted child (particularly if they're older) will feel like that kid. Are you prepared to parent a child who may not like you? Don't expect that this child will suddenly like you, particularly when you are taking that child away from everything he/she knows. If you have parented step children, you already know these feelings and know weather or not you can handle it. If you are prepared for it, you will recognize when you're feeling it and be able to work through it. If you're not prepared for this, it can catch you off guard and be a very scary feeling.

I know there are other adoptive parents reading this post who may have things to add. Please do so in the comments. Again, I don't want to scare you away from adopting, but to give you some things to think about before you adopt.

Monday, April 23, 2012

Serbian Adoptions - Repost

Wow! I am so excited to see how many people are interested in adopting from Serbia! If you're new here and looking for information, I've compiled a post just for you, which I am reposting today.

This is based on CURRENT information about Serbian adoption practices. Please be warned...there is NOT ONE SINGLE U.S. based Adoption Agency that has established a formal working relationship with the Serbian Ministry. (this information is verifiable by contacting the Serbian ministry yourself. Please email me for that contact info and I will give it to you. I was specifically asked not to put the email address in a blog post due to problems with spam) If there is ANY agency making such claims ask to see their documentation of such an agreement. Also, a Serbian adoption should be somewhere around $13,500 or LESS. Any agency making claims of significantly more money (I have seen as much as $45,000!) should cause you to run. RUN and don't look back!

Ok...on to the repost...
.....................................................................






So you're wondering about adopting from Serbia. Is it for you? Will it work for your family? How much does it cost? What types of children are waiting for families? What are the requirements? I hope I can answer some of your questions, or point you in the direction of someone who can.





Serbia (formerly Yugoslavia) is located in the Balkan region region of Europe. It is a small country, covering 34, 116 square miles. You can find out a lot about Serbia's history by reading here.

You can go to the Department of State's website for more details, but here are the basics:

Serbia is not party to the Hague Convention.

Who can adopt? Serbia requires that parents not be more than 45 years older than the child they are adopting. Parents must be married, but a common-law marriages can qualify. Single parents are approved on a case-by-case basis. If you're single be prepared to explain how you will care for a child with special needs.

What children are available?  There are currently more than 500 families in Serbia waiting to adopt healthy infants. While Serbia is slowly making progress in the area of services and acceptance for those with disabilities, they still have a long way to go. Because of this, the only children available for adoption from Serbia are those with physical or mental impairments who's needs can be better met in a country such as the U.S. There are currently approximately 50 children who are registered for international adoption in Serbia. Their needs vary from Down syndrome, Cerebral Palsy, Cleft lip/palate, Autism spectrum disorders or sibling groups. (keep in mind that except in the case of Down syndrome where a chromosome analysis can be done, diagnosis, particularly of Autism Spectrum Disorders, are not always accurate.) It is important to keep in mind that some things seen as "severe" in Serbia are diagnosis that are "no big deal" here in the U.S. This is mostly do to the services, both educational and medical, available in the U.S. Historically, children in Serbia born with obvious differences are usually institutionalized at birth. Although current laws state that children without parental care be placed in foster care at birth and that those currently residing in institutional care also be moved to foster care, the fact is there is a shortage of foster families willing to take the children with special needs. While education and public service announcements are becoming more common (I just saw some AWESOME t.v. commercials including many adults with Down syndrome during my most recently stay!) change takes time. While the children wait for change, they do just that....wait....

With the exception of sibling groups, families are only allowed to adopt one child at a time from Serbia.

Now that you have some background, let me explain the adoption process.

What are the agency requirements? At the moment Serbian adoptions are independent. While you need to work with a licensed homestudy agency to complete the homestudy process, you do not need to work with an adoption agency. You can make all your own arrangements for travel, lodging, translation etc. If you don't feel comfortable doing that, and would like more of a "hand holder", you can contact Cherish Our Children International. They are a US based 501c3 NGO registered with the US Embassy in Belgrade. (I'll cover this more later in the post.)

I want to know more. What is my next step?

1) Contact the Serbian Ministry directly. (email me and I can send you the email address) This should be a formal email in biography format. Include information about your family, your background, your income, etc. If you have a child with a disability already, include that as well as why you feel you can handle another child with special needs. Also include information about your relationships with extended family and what support systems you have in place should you adopt a child with special needs. In other words, what makes YOUR family a good candidate for a child with special needs from Serbia. List the criteria for a child who would fit into your family. For example, we were willing to adopt a child, either boy or girl, between the ages of 6-12 with Down syndrome or any other special needs. If you are specifically requesting a child with Down syndrome, you need to be open to all the medical diagnosis that are possible with Down syndrome because many of the issues are not diagnosed in Serbia. I also included photos of our home, our yard, the bedroom the child would sleep in, as well as some pictures of Angela participating in some of her many activities in the community. I explained how normal life for is for Angela in our community.

2) The Ministry will respond to your inquiry. Please be aware the "adoption unit" is run by a group of people who wear several hats, and adoption is just one of their many responsibilities. There are also only two English speaking contacts in the office. While people often receive a response with a couple of business days, there are odd holidays thrown in there and there, not to mention it's a very busy office. Please be patient. If you don't receive a response within two weeks, contact them again. When they do respond to you, it will be with additional questions, and/or requests for more information. At some point the ministry will request your dossier.

3) Items that must be included in your dossier. All items must be certified, notarized an apostilled:
   1. Homestudy
   2. Birth certificates for all adults in the household
   3. Marriage License (and divorce decrees if applicable)
   4. Federal Criminal Backround check (this is not the same as the Adam Walsh)
   5. State Criminal Background check
   6. Local Criminal Background check
   7. Medical reports for both parents. This is very generic, and only needs to state that the individual is free          of serious or communicable diseases or psychological disorders. Must be on physical letterhead and notarized.
   8. The following financial records:
      a. Bank statement including account balance (checking and savings)
      b. copy of latest income tax return
      c. Letter from current employer which must include annual wages
      d. Mortgage certificate listing you as owner of your home, or a letter from landlord stating rent paid w/copy of your lease.
   9. Proof of US residency (copy of passport)
  10. Photograph

4. Your dossier must be translated into Serbian. You can contact the US Embassy, Belgrade to request a list of translators. Please note the Embassy cannot endorse any translator. They will only provide you a list of translators who are qualified to translate your documents. You can find the list here, or contact the embassy directly.
US Embassy in SerbiaKneza MiloŇ°a 50
11000 Belgrade
Serbia
Tel: (+381 11) 306 4655
http://belgrade.usembassy.gov/

Your other option is to contact COCI (Cherish Our Children International) and they will make translation arrangements for you. The going rate for translation is 10 euro per page. There is a 1900 keystroke per page limit, so some documents (such as your homestudy) will translate to several pages more than the original. (for example, my updated homestudy was 8 pages but translated to 14) When counting pages of your originals, be sure to count the appostille pages! (You may also contact COCI for information about walking you through the rest of  your in-country process. I have been involved with COCI for a little over a year  now and their staff is amazing! Please read more details about their work in Serbia by clicking here. COCI is a true example of what it means to work with a society for change!)

5. At some point in the process - it seems to be a little different depending upon the circumstances of certain children/families - the ministry will provide you with a list of children who are registered for international adoption who fit the criteria you have requested. When I adopted Axel, I had met him on a previous visit so I made my request for a child fitting his criteria. My adoption of Asher was the first truly "blind" adoption into the US. Meaning I did not have any information on a child prior to my inquiry. At that time you may ask for further questions to help you make a decision. Please be patient with this process. The ministry (which is like the state) must contact the child's social center (which is like the county) who is responsible for the child. However, the child might actually be housed in a facility at the other end of the country from the social center so it can take a few days to get your questions answered. It is possible you will not receive a picture of the children! Due to the selling of information that happened in previous years, Serbia is extremely protective of the privacy rights of it's children. Please be respectful of this. We did not get a picture of Asher before we traveled. We could have chosen to wait for a picture, however Dean and I decided together that just like a pregnancy when we have no idea what our child will look like, this adoption was no different. We didn't care what he looked like. (and to be honest, Asher took horrible pictures and I think having his picture could have caused us to choose a different child.)

6. Both parents are required to travel. Once you have made your decision on a child, the ministry will give you a travel date. This is a FAST process! We were formally accepted for Asher on November 15th, and my meeting with the ministry in Belgrade was on November 22nd! The ministry will work with you on establishing a travel date that works for your family. We were prepared to travel quickly since we wanted our child home fast. In my opinion, if you're working toward completing an adoption, you know the travel is coming! With a Serbian adoption it's pretty easy to figure out a timeline.

7. Your first task in Serbia is to meet with the ministry. In attendance will be members of the Ministry, the child's legal guardian, social worker, and psychologist. If the child is in institutional care, a representative from the facility will be there was well. During this meeting they will go over the child's entire history with you, including social, medical, etc. You'll learn the circumstances that caused the child to come into state care. ( In both of my adoptions - both Asher and Axel were from the same birth city and represented by the same social center - I learned the names of the boys' birth parents, and that they were interested in contact.)

8. Immediately following the meeting you will go to meet the child. If your child is in Belgrade, it's a drive of just a few minutes. If the child is in another city you'll be driving there. Expect to stay in that city during the process of visitations with the child. For example, Axel was in a foster home in his birth city of Kragujevac. I stayed there for 9 days.

9. At some point in the visiting process two reports must be sent to the Ministry stating the social worker's opinion of how visits are going. If your child is in foster care, you will take the child into your custody much faster than if the child is in a facility. (In Axel's case I was granted custody on day 3, in Asher's case it was day 14. Even though I got custody of Axel sooner, the second report still had to be done, which was on day 6 or so.) The second report must be signed by the head minister of Serbia. Once you have a signature, hold on to your socks because things are going to move fast!

10. Usually the day after the signature, you will have the adoption ceremony in the child's birth city. If your child is over age 7, he or she must go with you because their finger print is needed to issue the passport. If your child is in institutional care and under age 7 he or she will not go to the birth city with you.

11. Once the ceremony is done, it takes 3-4 business days to complete the paperwork allowing the child to leave the country. Please allow yourself some room for error. Every adoption is different, and many cities have never processed an adoption before. This can add additional time. To avoid penalty charges for changing flights, I fly into Serbia on a one-way ticket and book my return flight 2-3 days before flying out.

What's the time frame? I have completed two Serbian adoptions. The timeline for each is included on the left sidebar of my adoption blog. Axel's adoption, from the time we started the homestudy until I traveled was 4 months. Asher's adoption was much shorter! More like 4 WEEKS. The ministry asks you to plan on 16-21 days in country. For Axel's adoption I came home on day 16 (we could have come home on day 15), and Asher's adoption I came home on day 18.

What's the cost? You can go to my adoption blog where you'll find a cost summary on the left sidebar. You'll notice a significant difference in cost between Axel and Asher's adoptions, where you'll find Axel's adoption was significantly more expensive. There was a corrupt facilitator who has since been removed, which reduced the cost by $5,000!!! Asher's adoption was completed after the removal of said facilitator, and before all my documents had expired. I had my original homestudy and Immigration approval written for two children from Serbia so I only needed to update a couple of things. The variables will be the cost of a homestudy in your state, where you stay while in-country, the location of the child's birth city, where the child is housed, etc. If the child is in another city your expenses will be at the higher end. If your child is right in Belgrade your expenses will be at the lower end. You can use my list of expenses as a guideline, then add/subtract what your own expenses would be. Currently, starting from scratch, a Serbian adoption will cost somewhere between $8,000-$13,500 dependent upon the variables I just listed.

I hope you've found this post helpful in understanding the process of adopting from Serbia. Please don't hesitate to contact me for the email address of the Serbian ministry!



Sunday, April 22, 2012

Something is wrong with our kids

All three of our youngest kids have some sort of virus. We have no idea what it is. Here are the symptoms:

1) exceptionally pleasant upon waking
2) offering to clean various things
3) voluntarily putting their dishes in the dishwasher...at the same time...without arguing.
4) helping Asher with things without being asked.
5) going to bed when asked the first time. As if they wanted to.

We're pretty sure this is just a 24 hour bug and nothing to get too excited about. We're keeping a close eye on them to be sure it doesn't get any worse. Angela seems to have it worse than anyone, with Axel a very close second. I think Asher just has a light case, probably because he mostly watches everything they do and imitates it, so this virus would be no different, right?

Easter/Spring Break

Trying to catch up a little bit with this post, so lets go back to Spring Break which for us was the last week of March. The kids weren't very happy that I spent most of the week sick with strep (again! Know any adults who've had their tonsils out? Mine need to come out. YUCK!) so we did a lot of this:

And this (in pajamas!) 

And Dean did some more of this

Next up was my niece Tia's baby shower. So excited to see her first baby, a girl, arrive in just a few weeks. Angela was excited for an event that was only for "ladies" and not little girls. I bought this leather jacket eight years ago when I was skinny enough to wear it. Now, other than the sleeve length which needs to be shortened by about 5 inches, it fits Angela perfectly. 

Then came Easter. Because we weren't sure if the kitchen was going to be done in time, we were didn't decide until the last minute if we'd be having our Easter meal with Dean's family here or not. In the end we did host it, and had a really great time with everyone gathered in the new kitchen. We didn't decorate eggs this year, or even get around to buying the stuff for it, or even any candy!

This was the first time we've had a large group of people over since Asher joined our family. He wasn't sure what to make of it except that he was VERY excited and sure that everyone was there to pick him up! Every time someone came to the door he went running with his arms up, but everyone was very good about telling him no, and shaking his hand instead. Finally he stood in the middle of the room, arms up in the air as if to say, "Will someone please pick me UP already?" So I did, and he seemed happy with that. ;-)  Even though there was no easter egg hunt, and no candy, Dean's aunt brought scented bubbles for the kids. They had blast with their older cousins out in the yard blowing bubbles and generally being silly.







So, that was our Eater and Spring break all wrapped up into one post. Now it's time for summer, right?

Wednesday, April 18, 2012

To Moms of Boys

If you have a boy with a disability who EVER uses a public restroom, well Dave over at Rolling Around in my Head has a blog post you should read. I'm glad Dave posted about this, because I've had similar concerns about my own boys (thanks to Dean telling me it's wrong!) but I have no idea how to fix this.

Well, Axel is petrified of public restrooms and won't have anything to do with urinals, so he chooses to sit when at school, a restaurant, etc. However, when he's at home and he does stand, his pants are at his ankles. Drives me crazy and no matter how many times we tell him, old habits are hard to break. Habits that he came to us with so I'm not taking the blame. LOL

Then there is Asher. He's been out of diapers for several weeks now. Guess what? He refuses to pee sitting down! He will ONLY go standing up. Didn't you know sitting is for pooping only? He needs supervision when standing because he still doesn't get the whole "aiming" thing but it's not something I want school staff helping him with. Also, do to some..umm...anatomical differences,  combined with the motor skill of an 18 month old, just opening the front of his pants isn't really an option. Even at school they bring him to the toilet to sit but he won't' go.  Not sure what I'm going to do to solve this problem.

Anyway, head over to Dave's blog and have a read.

Oh, while we're on the topic, can I bring up a pet peeve of my own? The word "potty".

Mom's, I'm telling you, PLEASE stop using the word "potty" with your kindergarten and school age kids! In school the world "potty" is for babies. Big kids say, "I need to go to the bathroom." I'll never forget working in a 1st grade classroom when one of the boys came running up to the teacher, "I need to go potty!" Every child eye in that room was on him at once in a "You just said WHAT?" kind of way. He turned back to the teacher, "I need to go to the bathroom!"

There was another time, same building the next year when Angela was in 2nd grade. My class was in the hallway transitioning to somewhere when we ran into Angela in the hallway with her aid, when her aid turned to her for all the kids to hear, "Angela do you need to go potty?"

Really????  In school...to a 2nd grader???? As if the kid doesn't stand out enough without someone talking to her like she's 3?

 I think it's a mistake a lot of moms make without realizing it.

Ok, jumping down off my podium for the day. ;-)

Tuesday, April 17, 2012

After School

A couple weeks ago I started school. I was very excited that first day. Do you know what I've learned? Every day is like the first day all over again! Now that I know how fun school is, I can't wait to go every day.

School is a very long time. Three hours! When I come home I'm really tired. While mom makes my lunch I like to look out the kitchen window and watch the birds. Somedays I'm too tired for birds...or lunch.

Yesterday I came home and wanted to lay by the window, but remembered there was a more comfortable place. The couch looked MUCH better than that hard bench! I climbed up and made another discovery. If I pull the blanket over my head like this, nobody can see me sucking my tongue!

I heard Mommy calling me, "Asher? Asher, where are you?" 

I peeked out from under the blanket. I'm right here Mom!

Surprise!

Today when I got home Mom had my lunch all ready for me. I'm so glad, because it was tough to keep my eyes open while I ate. As soon as I was done Mom said it was nap time. I sure love my nap.

Monday, April 16, 2012

The Store

It's never happened to me before.

Asher and I were in the store check-out line. In front of us was a young mom with a boy around 7 years old. The boy turned and saw Asher standing behind him. "Hi!" he said to Asher.

Asher immediately waved "Hi." back.

"Hey! That's now how you say, hi!" the boy said. "Open your mouth and say hi!" he demanded.

I quickly responded, "That's how he says hi. He talks with his hands using sign language."

His mom jumped in, "See? You learned something today. You learned how to say "hi" in sign language. Isn't that cool?"

The boy didn't look very happy with our response. He looked back to Asher. "You're supposed to talk with your mouth. Just open it and say hi." His mother, looking mortified, roughly turned him away as she leaned down and whispered a lecture in his ear.

I looked down at Asher.  At that very moment I wanted to do two things at once. First, I wanted to get in the kids face and tell him some things are better kept in your thinking bubble. Then I wanted to leave. Forget paying for our stuff because at that moment I was feeling tears well up in my eyes.

A 10 second exchange with a little boy brought me to tears. In nearly 16 years of parenting kids with Down syndrome I've never had anything like this happen to me. But wait...it didn't happen to me, it happened to Asher! That's what upset me so; that it happened to Asher. The boy didn't even say anything mean, really, but I instantly pictured Angela walking through her high school. How often does this happen to her? How often do people give her a hard time? And Axel? Does this happen to him? So what that neither Axel or Asher would understand the words the boy used, they both certainly understand the tone behind them.

We didn't bolt from the store, but when Asher and I did get to the car I gave him a big hug. "You're perfect Asher. Everything about you is perfect."

Sunday, April 15, 2012

Do you know what tomorrow is?

It's the first day of practice for this:


And since we no longer have any of this:

We now have a lot of these:

Since both will get to participate this year! 

Saturday, April 14, 2012

Eating with Asher

If you don't follow me on Facebook, then you missed the excitement that happened on Monday. I had just given the big kids left-over Easter dinner, but Asher had that for lunch so I gave him spaghetti-O's instead. (since that's highly nutritious!). I always chop up the meatballs because..well...Asher doesn't chew. At all. Instead he mashes stuff up into his very high palace or just swallows it whole.

So the kids are eating and I am not paying attention. I turned around to see Asher with his head turned extremely far to one side, his jaw jutting out, and his color turning a not-so-nice shade of gray. "He's choking!" I hollered to Dean.

I did a finger sweep but there was nothing.

He was moving a little bit of air through his nose but none through is mouth so I didn't want to do anything else in case I caused whatever it was to block his airway completely. I watched him for a minute. He was trying to gag but all that did was cause spaghetti-O's and TONS of mucus to shoot out his nose. His color continued to get worse. Although he was moving air, he wasn't moving enough air. I called 911. I think Dean thought there wasn't really a problem until I decided to call for help.

Right about the time the paramedics arrived, Asher vomited up a whole meatball. Being about 1 inch in diameter they are perfect choking size.  It took about 15 minutes for his color to go back to normal, but the paramedics declared him "good", though they suggested bringing him to the ER to be evaluated. We were in and out of the ER in an hour! (that is record time folks!)

Two days later Asher started sneezing copious amounts of thick green snot, and whenever he eats he's sounding really "junky" in the back of his throat. I brought him to the doctor and it seems he has some infection due to the spaghetti-O's getting stuck up there. Poor kid!

Anyway, Asher is making slow-but-steady progress in the area of eating. We can now get initial bites and sometimes he'll even follow with one or two chews. We're still ages away from him being able to eat food that does not require chewing. Right now we're sticking to dissolvable foods like corn puffs, cheetoes, etc. All healthy stuff, to be sure! I have a goal in my head of having Asher on regular foods by September when he starts 1st grade. It's a lofty goal, and probably way off base, but yesterday he was doing particularly well with some corn puffs! He takes initial bites now, and sometimes one or two chews, then he's back to just mashing it against his palate. Still, this is progress! (these are "dissolvable" corn puffs, which dissolve to almost nothing in your mouth)

Speech


I'm frustrated.

How's that for an introductory sentence?

I know lots of kids with DS who were adopted older who are talking. Not only that, but I was with one of them when he was adopted at age 7, and he was saying many words in English in the first week he was with his new mom (as I tagged along). I see videos of other kids at a mere couple of months home, and they're talking. Sentences.

Axel doesn't talk. Well, he has a some words he can say but only if they're in isolation and he rarely chooses to use them. Instead we get "Axelese". I think in his head he thinks he's speaking the same language we are, but it just doesn't come out. 100 times a day he says, "Didi oo....right?" We used to answer with "Right!" That was until we realized sometimes he's asking if he could do something...that he can't...and we've just given him permission to do so! If we are frustrated, Axel has to be even moreso.

Although Axel is hearing, he goes to deaf and hard of hearing special ed. classroom where only ASL is used. The teacher, who is also deaf, does use speech with Axel also. Axel really needed this program and it has been wonderful for him. Part of Axel's language issues stem from the fact he was exposed to several different language before we got him, none of those exposures lasting long enough for him to learn the language of the setting. Because of his, Axel never developed a first language, and sadly his window for developing an intact language is closed. I have seen Axel in school and how he signs with his teachers and staff. He signs quite a lot and is figuring out the difference between deaf people and those who are hearing; how to get their attention, that they have to be looking at you to know what you're saying, etc. I am also fluent in ASL but for some reason Axel refuses to sign at home. One day over spring break he signed all day long and it was wonderful. I knew exactly what he wanted the whole day! But it was one day. Just one.

I don't know what Axel's school day will look like next year. I know that he has picked up enough sign now that he can access and interpreter at least for short periods of time. He goes to the mainstream music class and seems to do fine. His placement for this year was absolutely the right choice. I haven't second guessed myself where that's concerned. I usually have a pretty good idea what my kids need, but right now I'm pretty lost as far as what to do with Axel for next year.

And then there is Asher. He was in the same facility from the day he was born until I got custody of him. They spoke Serbian there and Asher clearly understands Serbian. When we did his assessments it was with a Serbian translator, and when he had his surgery we also had a translator. In both instances he knew what the translator was saying, even 3 months after no exposure to the language.

But still, there is no speech. I don't really expect there to be with Asher since he wasn't speaking Serbian either. He has a lot of tongue issues to overcome before there will be speech for him. He's trying though. Still, he's silent unless you're sitting face to face with him, prompting him produce some sounds. When? When will he discover he can make noise? I expect that someday he will talk, but its a very long time away.

We put Asher into a mainstream kindergarten classroom. At home there is Axel who speaks like he's from Mars and Angela who, with her hearing loss, is very difficult to understand unless you know her well. Asher needs to be around kids who are speaking English all the time. Fluent English. Clear English. He needs to see that kids talk. A lot.

I loose Asher in the house all the time. He makes NO noise. Right now there are two kids in the bedroom playing. I can hear the electronic toys going, and once in awhile Axel will repeat the name of a letter, but otherwise the house is silent. It is any mother's dream, to have a quiet house. It's not my dream.

I wonder how God decided we should parent the non-verbal kids? I know "why". Because we could give them communication in the form of sign, or electronic devices, or whatever. But why did God choose that we should have silent kids? Someday I hope to ask Him. In the meantime, we continue to do all that we can. Encourage sounds. Encourage words. Encourage communication. Encourage, encourage, encourage.

Wednesday, April 11, 2012

Kindle

I've been following my friend Ashlee's blog for quite some time. They domestically adopted the most adorable little guy, Noah, when he was just a few months old. Having a chromosomal disorder considered by the medical community to be "not compatible with life", Noah has beaten the odds and shown that same medical community just how wrong they are! You can see a picture of just how handsome and healthy Noah is on the header of their family blog here.

A couple months ago, the stories of Pleven, the location of an institution in Bulgaria, started coming out. 200 children starving to death under the "care" of a corrupt director. 14 year old children weighing 9 lbs, 9 year olds weighing 11 lbs, and the list goes on.  Bulgaria requires to trips. Several families who are adopting from Pleven have just made their first trip, meeting their children for the first time. Children who are near death, some of whom have been transferred to a nearby hospital in extremely dire condition.

Ashlee and her husband are one of the families who have recently decided to get another child out of Pleven. The boy, at 4 years old, is wearing size 6-9 month clothes. He is lucky enough to get his diaper changed once every 24 hours. Ashlee and her family are trying to work fast to get their dossier completed. In an effort to raise money they're doing a Kindle Fire giveaway. You can go here to enter, but hurry! There are only three days left.

As many of you know, there are only certain adoption fundraisers I will post on my blog. Please consider contributing to this family.

Monday, April 09, 2012

On Birth Families

A couple posts ago, someone asked in the comments if anyone follows my blog from the boys' Serbian life?

I thought this was a good opportunity to talk about my feelings about birth families and how our boys came to be in our house. Some if the story will belong to only the boys and their birth families, but some I will share.

First of all, I'd like you to go read this post, written the day I met Axel's birth family. Yes, I have met and remain in contact with Axel's birth family. Axel's birth family has never stopped loving him, and it was because they love him that they chose to allow him to be adopted in the U.S. My heart aches for them every single time he does something new, or has a first-time experience. I try to capture as many of them as I can.

Asher's birth family also loved him very much. They didn't just dump him off at an orphanage and walk away. There is so much more to it than that. If anyone ever thinks the birth family just walked away from a child, even if you were told that by orphanage staff, don't believe everything you hear. And even if a birth mother did walk away, know that her heart aches for the child she lost. Even if she never looked back at her child, her heart still aches.

Asher's birthday is on October 31st, the same day we received the last of his profile information. The same day his birth family was having a huge birthday party for him at the orphanage. They had no idea at that very time, we were on the other side of the world and hit "send" on an email, stating we would like to make him our son. As they sang "Happy Birthday", we were hoping we'd made the right decision. The day after his birthday, his parents were notified a family had come forward for him.

Just a few days later, on November 22nd, I sat around the table with the Ministry and Social Welfare officials and heard the details of Asher's life up to that point. I know for a fact Asher's birth family loved him very much, and having another extended family with Down syndrome they knew exactly what life would be like for Asher if he stayed in Serbia. They sacrificed their hearts so that Asher might have the opportunities kids like Angela and Axel have. It takes an incredible amount of love to make a decision like that.

I was told the birth family had the legal right to observe my visits with Asher. I was a bit nervous about this, only because it makes for an awkward situation, but I would do whatever was needed if that's what God had planned.

In my file of Asher's adoption documents I have the address of his birth family. Just as I've sat on other things a bit longer in terms of Asher's learning since he's been here, so too have I felt the need to just wait and not contact his birth family yet. I know they are still hurting. And when I feel the time is right I will reach out to them.

There are so many parts to their stories I cannot tell, but I do need to say this: Do not judge the birth parents. Do not make up a story in your head, and do not believe anything that wasn't written on a formal document signed by the birth family. I am one of the rare international adoptive parents, having not only contact information but the chance to meet my child's birth family. But I want to be even more rare than that. I want for birth families to be able to keep their kids with Down syndrome at home and know they can raise them successfully to be productive members of society. I want to help eliminate the stigma that comes from having a child "like that", to let them know they did nothing to cause this and are not being punished by God for something they've done. Someday I hope that having a child with Down syndrome in Serbia can be like it is here; an amazing, positive, life-altering experience.

Blog Link

In my previous post I mentioned I would eventually share a link to the blog belonging to a family who is adopting from Serbia. The Breens are leaving in just a few days!!! They will be bringing home a 7 year old boy to be a brother to their son Vlado who they adopted from Serbia 15 months ago. I'm so excited for their family, and to see another Serbian prince come home! If you'd like to follow their story, you can find their blog here.

Sunday, April 08, 2012

Wally Johnson Benefit Ride


On Wednesday, March 14th, our friend Wally Johnson was in a near-fatal motorcycle accident in Buffalo, MN.  His list of injuries included:

Skull fracture,
several facial fractures including nose, several jaw fractures
fractured ribs
both wrists shattered
fractured femur
fractured pelvis
bruised pancreas, kidneys and lungs.

Wally was airlifted to North Memorial Trauma Center in Robinsdale, MN...50 miles away from his home where he lives with his wife Naomi (my high school friend), and their two kids ages 12 and 9.

On March 15th, while he was still in a coma,  he had his first surgery to repair his femur, knee cap, wrist one and wrist two.

On Friday March 16th he had surgery to have a trach put in, then on Tuesday, March 20th he had is first of many facial surgeries to begin the process of rebuilding his face. His lower jaw was fractured in 5 places, his upper jaw was fractured in five places, each cheek bone and eye sockets had 4-5 fractures, his nose was not attached and had several fractures, the bone above his eyebrows had several fractures as well. His jaw was wired closed and a gtube (abdominal feeding tube) was put in.

Wally finally started coming out of his coma 2 1/2 weeks after his accident, and at the three week mark was  moved to a rehab facility, which is 25 miles away from their home.

Needless to say, this has been a very difficult time for their family. Not only emotionally, but the travel expenses back and forth for Naomi are adding up quickly, not to mention trying to divide her time between the hospital, the kids, and work now that she's returned.

On Saturday, May 19th there will be a benefit ride. The ride will start at

Delano Lanes
429 Babcock Blvd
Delano, MN 55328
763-972-3344

Registration starts at 10:30 a.m, kickstands up at 12:30. Ride will end at Delano Legion around 4:30-5:00 for dinner, beverages, silent auction and live music by The New Defective.

Saturday, April 07, 2012

More Serbian Royalty!

Some friends of mine are leaving next week to bring home their Serbian prince. I'm so excited for them! Later I'll be able to post a link to their blog.

Another family, the Lakes, are working on completing their Serbian dossier!  Serbia does not allow online photo listings, so as we did with our adoption of Asher, they are doing a semi-blind referral. That means when they've submitted their dossier they will receive a list of children who meet their criteria, and will make their choice based on that list. There could be one child or 10!

In the meantime, another friend is doing a Scentsy fundraiser for them. Because they're adopting from Serbia, they do not have the benefit of going through any of the popular non-profit organizations to do their fundraising. That means it's more difficult to get the word out about fundraisers and their adoption process in general. Please help spread the word!

There is yet another family working on completing their dossier for Serbia but they aren't posting information about it on their blog yet. Soon...very soon!

Wednesday, April 04, 2012

It is DONE!

Ok, well "Done" means Dean just has to hook up the plumbing, (which he's working on as I type!) and the dishwasher will be installed tomorrow. Otherwise this darned kitchen is DONE!!! I'm so proud of Dean. He did an amazing job getting the stuff done he could while also working and juggling the rest of us. My man is wonderful.

So remember we went from this:


Then we finally took the plunge and gutted e.v.e.r.y.t.h.i.n.g!

This view changed from this:


To this!



This view went from this: 

To this!


And this view went from this: 

To this!


 I absolutely LOVE the overhead vent that Dean found online!


And gotta love Craigslist for things like counter stools!


First Day of School

On Sunday afternoon Dean announced that he and Asher were going for haircuts. What? No! I love Asher's hair. It has a little bit of curl to it, and...you know...he's had his head shaved his whole life, I wanted to grow "hockey hair". This drives Dean crazy I know, but whatever. Dean promised to not have anything taken off the top. ;-)


So my big man took my little man, and they both came home quite handsome.

The next morning Asher found his new backpack sitting on the bench. Now, he gets very excited whenever he's told to get his jacket on, since it means we're going somewhere, or at least outside! But when I told him to get his jacket on THEN put his backpack on him, well...he was beside himself! He was so thrilled to be walking down the driveway to the bus stop! He didn't know what was going to happen yet, but hey, we were outside! He has gone to the bus stop with the big kids before, but they weren't with us this time. Maybe we were waiting for them to come home?

I have to tell you, this is a toddler-sized backpack. TINY. Barely enough room for a couple of papers and a notebook. It fits him perfect. 

Standing at the bus stop is great physical therapy since it's a steep hill and requires little boys to balance. ;-)

Originally he was going to ride the regular ed. bus to school, but at the last minute we opted for the special ed. bus this year, then next year he'll ride the reg. ed. bus with the neighbor kids.

The first day I rode with him on the bus.



I stayed with him at school the whole morning. He really enjoyed school, although it was evident to me right away that we do need to add ELL (English Language Learner) services. His primary need at the moment isn't his cognitive disability but the language difference.

Asher is assigned two buddies every day. They pair up with him for stations, and since walking with a group in a line is new for him, any time they're out in the hall or walking to the playground one of his buddies (or both since sometimes it's hard to share!) holds his hand. Asher LOVES holding hands, so this gives him an opportunity to do so appropriately.

He got to experience a playground for the first time, and climb up the stuff then slide down. OH how he laughed and clapped for himself at the bottom of the slides! He had so much fun!

When it was time to go home I rode the bus with him. He was almost as excited to turn down our street as he was to pull into the school driveway!

When we got home, he made a bee-line for his room and came back with THREE dangly things. LOL Guess he missed not being able to dangle at school.

Once he'd had lunch he took a HARD three hour nap!

Tuesday morning was the first time Asher got to go by himself to school. Sink or swim buddy!

He was SO excited now that he knew why were standing at the end of the driveway!

His teacher said he did GREAT! There was lots of tongue sucking though, which I explained for him is the equivalent of thumb sucking. They know how to prompt him to keep his tongue in, and once he's been reminded a few times he's pretty good about it. He brought home his first library book that one of his buddies  helped him pick out. Green Eggs and Ham. He loves it!

So the baby started school. Wow...three hours by myself four mornings a week (Thursdays we go to Therapy all morning.) Whatever will I do with my time?

And old video

Wow, is my sense of time ever messed up. The title of this post would make one thing I had dug up an old video of Angela or something. Nope. Wrong. It's an "old" video of Axel. Yep, it's about 2 months old. I gauge time by two things now: When Asher came home and when the kitchen remodel started.

Speaking of which, did you know we're on day 76 of no kitchen? No that's not a typo, and no I'm not happy. I don't think it could have been avoided really, and we're within the timelines listed on any contract we signed so I can't even complain. But, you know, when some of the work was done by Dean, and he works a full-time job plus needed help with some things (and throw in Asher's surgery in there, days we had to be out of the house, yada yada yada) time adds up. But I'm so done. Done I tell ya! There has been another phenomenon at play as well, and maybe someday I'll blog about it.

Oh...the video. So anyway, this video was taken about 2 months ago. Caught in camera, the very first time Axel has drawn a person all on his own. (Ok, there is a some coaching going on!) Not only that, but he tells me a bit about them. Keep in mind that 15 months ago Axel's language level, both receptive and expressive, tested below 12 months - at 10 years old. So here he is, my amazing son. Wonder Boy Genius.


I have to tell you how thrilled I was to discover this video on my phone. You see, just a couple days after recording it, that paper Axel drew on found it's way between the blades of scissors and some project Axel and I were doing. I felt HORRIBLE that I'd cut up his first real picture. Now that I have a video I don't feel bad!

Tuesday, April 03, 2012

Driving


Angela is turning 16 in just 9 short weeks. I can hardly believe it. Neither can she because, like every other teenager I've had, she's been waiting FOREVER to get her driver's license.

When she sees a vehicle she likes (usually any model in blue or yellow) she announces, "I'm getting that car for my birthday." Other days she asks, "Am I getting a yellow truck for my birthday?"

I'm heartsick about this, really. I've never told her, "I'm sorry Angela, but you'll never be able to drive a car." (and she won't. You don't want a young lady with anger issues behind the wheel, believe me!) Instead I've always told her, "When you can pass the test, you can get your license."

You see, I've told her this to appease her, never thinking that she would HOLD me to this! Do you know what she wants to do for  her birthday? Yep, she wants to take that darned test. I'd rather be the one to tell her "No, you can't." than have her take that written test again and again only to fail each time. It would destroy her.

But I'll tell you what we WILL do for her birthday. We'll go to the DMV and apply for a state-issued ID card. It looks just like a driver's license only it states the person is not a legal driver. This ID card can be used any time proof of identity is needed. The one problem I can foresee is Angela will be convinced this thing IS a driver's license and decide she's going to drive somewhere. Our keys will be well hidden!

Do you know what will come next? Her 21'st birthday when she'll want to go bar hopping. 

Sunday, April 01, 2012

Some pics I never posted

These are just random pics from the last few months that I never bothered to post.

Asher's 1st time finger painting at therapy.

Asher really enjoyed Angela's basketball tournament!

How could I not take a picture of this?

Remember when I was in school? We had to make a 3D model of the abdomen including all organs and vascular structure.

Axel's first time carving pumpkins.

Angela and a couple of her teammates at the state bowling tournament.

My most favorite person in the world.

Angela doing what Angela does best: Cheering for herself!

Still in Serbia. He was squawking at me. LOL (and yes, this IS the same boy finger painting in the pictures above!) 

One of our 22 visits at the orphanage in Serbia.

Angela right after her choir concert. How does her hair get messed up just standing on the risers??????

Asher loves the dogs.

Angela started back to OT and Speech this fall, only to drop out a couple months later. With all her other extra curricular activities, plus her general attitude about therapy, it just wasn't working so she "graduated". 

We had a really mild winter here, and I don't think we ever had more than a couple inches of snow on the ground at one time. (as apposed to last year when we had 6 feet!) This was one of the few times Asher got to see snow this year!

Asher trying to figure out why Axel finds these so fascinating.

Yes, he is a ham!

Angela's most recent choir concert. She stands in the back row so she can see over everyone else, but once she gets her feet on that riser, she's NOT moving, even to move down next to the other singers. Nope. Not. Moving! Look how TINY she is compared to everyone else!

Asher watching for Daddy to come home. Now he has a window seat in this spot, which he LOVES!

This was way back last fall when Angela went to the homecoming dance. (An enlightening experience for the mom!!!) Because she's so tiny (see the choir picture above) it was hard to find a dress that not only fit her but didn't look like a "little girl" dress. Have I mentioned Angela and dresses don't mix? She wasn't in the door of the dance 30 seconds and she was on the floor doing "the worm". Really. 

Asher's first experience with shaving cream. Kinda liked it!





Axel decorating his valentines.