Blogging about life in Minnesota, raising our six 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!"

Sunday, July 31, 2016

Funny how that works

When you adopt a child, you are agreeing to accept whatever diagnosis may have been missed prior to adoption, or whatever diagnosis comes up later as they grow. This is just how life works, and if you don't want it to work that way, you should never adopt. Just say'in!!!

As an example, there was Axel's diagnosis of AAI (Atlanto Axial Instability) just weeks after arriving home from Serbia. This is one of those things that can happen in kids who have Down syndrome, and something as an adoptive parent I was prepared for.

With each of our adoptions we had to list whatever criteria we were willing to accept in any children who's referral we would accept. Our criteria were fairly broad: Over age 7, Down syndrome, Male or Female. We intentionally did not accept referrals of kids who also had a diagnosis of Autism or Fetal Alcohol Syndrome because we didn't feel prepared to deal with either of those diagnosis, although we knew it was very possible any of our kids could later be diagnosed with anything later on.

Audrey has been home 2 years now. For some assessments we prefer to give the kids a year+ home, allowing them to shed some of their institutional behavior, gain some language, and just generally have some experience living in the real world before putting them through an assessment type situation.

Sometime around September last year Audrey's behaviors started to change. Mostly she just came out of her shell. She became much more noisy, but her noises are just self-stimulating behavior, not communication. (though she does have singing noises, which crack us up!) She dances and sings in her own way much of the day, but there are other noises that are painful to the ears when listening to them for hours on end, primarily moaning and growling. When Audrey gets mad, watch out! Pinching, biting hair pulling and kicking. Most of these are done to avoid tasks she doesn't want to do, or get out of an environment she doesn't like. She still has a lot of repetitive behaviors that, although they are very common among post-institutionalized children, they are also common among kids who have Autism.

I have known for a long time that Audrey's behavior and functioning were beginning to look more and more like Autism. There was the question of "Institutional autism" - which is not a recognized diagnosis - which is autistic-like behaviors caused by neglect and severe sensory deprivation, which all of our kids adopted from Serbia experienced.

Audrey recently finished an assessment with a child psychologist, who went over all of her records from school, reports from us and from the county. Audrey has now been diagnosed with "Severe Autism" and "Profound developmental disability".

Yesterday we took all the kids to see "The Lion King" (A HUGE thank you to Minnesota Parent and Hennepin Theater trust for this amazing gift!!) This was a "sensory friendly" performance, with decreased sound levels, lights that stayed on, and, since there were hundreds of people in attendance who had a wide variety of disabilities, there was no need to worry about unusual noises our kids may make at inappropriate times. :-) The more I looked around, the more I realized how much three of our kids fit in with people who are on the autism spectrum. Funny how that all works, isn't it? When we say "No, thats not on our list of criteria" but that is what we will deal with anyway. Noting has changed, we have the same kids.  Only a new label, which will be helpful to Audrey in the future as we strive to understand all the things that make her tick.

Two more of our kids have assessments coming up, and I have no doubt they'll each be given the additional label of Autism. 

Thursday, July 21, 2016

GOOD NEWS Check up!!!

Today Angela had a check up with her liver specialists and surgeon. First she had an ultrasound to check the bypass they put in back in April. Her liver looks great and now, for the first time in her life, is  normal size for her body! There has been A LOT of revasculature of the tiny vessels, so more and more blood is being carried to her liver. This is exactly what we wanted to see.

Angela gets a shot of Lovenox, a blood thinner, every morning. She has done very well with them, but it is no fun. She has major sensory issues about the alcohol wipe because she doesn't like stuff on her skin. The shot itself burns and leaves giant baseball-size bruises on her arms and hips where she gets the shot.

Today the doctors gave Angela some good news!

Dear Kim

I'm going to address you personally, since you are obviously obsessed with my family and would like to pick apart my parenting. Unfortunately I accidentally hit "delete" on your most recent comment instead of publish. (reflexive action, as I get a lot of spam and your comment was mixed in with several of those and my finger was clicking away. Sorry about that.)

You don't like that I used the word "inconvenience" about having to deal with my son's chemical dependency issues. As has happened many times, you missed a very large point in my post, which happens quite frequently in your comments.

*edited to add* one of the many things discussed in family therapy with chemical addition is the affect on the rest of the family, INCLUDING "inconveniencing" family members by the addict's choice to use drugs. You said went through alanon as a kid, but have you as an adult? Because it is often discussed.

Yes, it is a HUGE inconvenience to me to have to drop everything in our lives to deal with the bullshit of addiction in an adult who hasn't wanted contact with our family for 10 years. I did it anyway, because he is my son.

It is a HUGE inconvenience to Dean, who is not his father and has never had a relationship with my son - because of addiction - to drop all of his plans for a weekend away, something incredibly rare for him, to deal with the addiction in my adult son who hasn't wanted contact with our family for 10 years. The lack of contact was because of addiction.  He did it anyway, because this is my son.

It is a huge inconvenience to me to find someone to help Dean for the day with 6 kids. Because yes, he can absolutely manage the kids on  his own, but he was also in the middle of a major project here that NEEDS to get done, and he can't do any of it while watching two toddlers (Amos and Audrey are virtual toddlers)  and keeping he peace among the other 4. So yes, I had to find someone to help Dean, with very short notice, for an entire Saturday in July. This is NOT easy to do. But I did it anyway, because this is my son.

It is a huge inconvenience to me to drive my giant van 12 hours over the course of 3 days (that's a drive to Chicago and back) when I wasn't budgeting to be spending that kind of money in gas. I don't have another vehicle to drive. But I did it anyway, BECAUSE this is my son.

Do you get it now????? That it doesn't matter that something is a major inconvenience BECAUSE this is my son, so as a parent, I did it ANYWAY because that is what parents do.

Thankfully I did it. Because I was able to hear some great things from my son. About lots of different things. Most importantly I was able to hear where he has "been" for 10 years and how well he's doing "today" as he makes his plan for "tomorrow". I used quotes because I'm talking figuratively, and you might miss that.

I blocked you on FB a couple of years ago, and I'm going to tell you now, I'm done with you here too. I will not publish your comments anymore. You have nothing good to say, and normally I don't have any problem publishing comments from people who don't agree with me. (I have been posting most - not all - of yours for years, haven't I? Some you have written just to push my buttons and I deleted instead of posting them.) I can have sensible discussions with people without having to agree with them. But that's not why you're here, is it? You have nothing good to say about my family so WHY DO YOU POST HERE??? I don't normally post comments from trolls (because there are plenty of those in the adoption community) but have chosen to post most of yours because I know (knew) you in real life. But I am breaking up with you on my blog. I am done posting your comments. I will not post even one more. Go ahead and post. When I see a big long paragraph of a comment with your name attached to it, I'm deleting without reading.

Sunday, July 17, 2016

The Refresher Course

Yesterday was exhausting.

It didn't have to be.

I could have chosen not to go.

After all, he is 29 years old and responsible for his own decisions. Why should I go and sit through what I already know? It is a huge inconvenience to make the two hour drive, spend the entire day dealing with heavy emotional stuff, then drive two hours home.

Because it is "family education day" at the treatment facility, and I am his family. I am his mother. I went.

And I had to talk about tough stuff. About the decisions I was forced to make as a parent. About my past.

When I was around 10 or 11, until I was around 14 or so, I spent a lot of time in Alateen. I learned at a very young age that whatever choices were made by my loved one were not my fault. I was a child and had done nothing to make that person choose to abuse their chemical of choice. I learned it wasn't because I was a bad kid. I learned it wasn't because I didn't clean my room. I learned there are NO SECRETS, and that hiding the problem just added to the problem. I also learned I never wanted to use drugs or alcohol because I never wanted to put my family through all of that.

Then I became a teenager myself, and at age 17 I joined the army. In the army in 1985 I could drink as much as I wanted as long as I wore my uniform to the bar on base. I had a lot of fun, but I also found myself in a few scary situations. I was drunk nearly every night of the week, staggering back to my barracks with my best buddy. At some point I realized I was headed the wrong direction and stopped. I remembered things from my life I didn't want repeated. When I came home my friends were doing a lot of drinking and partying. Sometimes I joined in, and sometimes I opted not to. One night my boyfriend and I were at a party. There were lots of drugs being passed around and I had to make a choice. Be "cool" and give it a try... or walk away. I left the party, and my boyfriend, behind and never looked back. I was 18 years old.

My first son was born one week after my 20th birthday, and my second just 15 months later. I can't give all the details of the next several years, because although there should be no secrets about chemical abuse, some people from my past have a right to tell their own story. I, and my kids, are no longer involved with them so they have a right to keep their own secrets. Suffice it to say, my kids were exposed to situations that went against everything I wanted for them. I got them out as soon as I was able,  but not before the damage was done.

As my kids became teens, and I a single parent of kids struggling with budding mental health problems, I had to fall back on the learning I had done at 12 years old. That even though these were teenagers, and I was giving them the tools I knew to give them, they still made their own choices. I got them help whenever they would cooperate, and I remained as available as possible for them. Before I knew it they were adults, and my ability as a parent to help them was significantly limited.

And I cried. Oh how many nights I cried for my boys, but my mother tears couldn't fix the problems. I watched each of them sinking, then swimming back to the surface trying to grab my hand, only to sink below the surface again. Eventually one found his "rock bottom" and accepted help, but the heart broke into a million pieces whenever I saw him. I leaned heavily on God, begging keep my son safe. When we would go weeks, then months without hearing from him I would check the area jail rosters, and google his name looking for some hint of information. My best days were when I found him on a jail roster. I knew that he was in a bed, had food - even if it was just a balogne sandwich - and wasn't lying in a ditch somewhere. Anytime there were unidentified bodies on the news I read the descriptions carefully. When there were surveillance videos of robberies in the area I knew he wandered, I looked close at the person's build to see if it was him.

For 10 years, this has been my life. While some of you think I'm all 'wrapped up" in the kids in my house, I can assure you, there have been countless hours spent worrying and looking for that one kid. On his 26th birthday I wrote this to him and posted on my Facebook page, hoping he would login and see it:

26 years ago, at 4:18 a.m on July 3rd, 1987 I looked into your eyes for the very first time. I was just 20 years old. I will never forget the way you felt in my arms. Your baby smell. The way your hair felt. The sound of your cry.  You made me a mother. You are something to me that nobody else can ever replace. My first baby. My first son.
You were the easiest baby ever. So calm and quiet. Always content with the world, and yet so inquisitive.  
Our lives were never easy. I guess God had lessons for us we couldn't learn any other way. I tried so hard. I tried to always be there for you, to pick you up when you fell. To let you fall on your own when you were ready. To keep you out of harms way. Angry when I couldn't protect you from everything.   If only you knew how many nights I have laid awake crying for you. Praying for you. Asking God to please just keep you safe one more night. If only you knew how much I miss you.
I'll never forget you learning to pedal your first trike, your blonde hair blowing in the breeze, your big blue eyes looking back to make sure I was right behind you. "Coming Mommy? Coming?" you kept asking. I've always been right behind you Noah. I've never left. I've always been right here. I will always be right here.

And then one day a few months ago, on the day of Angela's life-saving surgery,  came this:

Note: I chose to share the headline, and mugshot, because it is public information and easy to find. And, there are no secrets about drug use. My son is a drug addict. *

Do you see that darling little boy on the tricycle? Do you see the strung out man below him? That is the stranger I drove to treatment on June 15th. I can't even fathom how that adorable, innocent little boy who always wanted to know I was with him had morphed into THAT person!

And so, yesterday I attended that refresher course.  I was reminded, once again, that its not my fault. That I did not do anything to cause his problems. I wasn't a bad or neglectful mother. Tomorrow we will sit down, face to face with his counselor, and have a very painful discussion. All things that need to be will be brought to light, both good and bad. As a 12 year old girl I wrote, then read the required letter to my loved one. Today I have written my letter that I will read to my son, and he will read  his letter to me. There will be things I don't want to hear. There will be things I need to hear. There will be emotional pain, and there will also be healing.

It is up to him from here. Whatever  happens from here is 100% up to him.

If you are a parent, and suspect your child is using drugs or alcohol, even if they are an adult, please, get yourself into an alanon meeting. Learn what it means to be "co-dependent". Learn what it means to be an enabler. Learn how to take care of yourself, and how to love your child through their addiction. Learn to find help so you can find healing.


Time hop after Cancer

Every day the Timehop app reminds me of some event over the last few years. For some things, I don't need a reminder. Like a birthday or anniversary their dates are stuck in my head.

July 17, 2014

That date marked my last round of chemo. It was the hardest of all my rounds. Not just because chemo side effects are cumulative, but because I had opted to skip the Neulasta shot that caused so much of the bone pain. Normally I bounced back from each round in about 10 days, but that last one took six weeks.

This week I will go for my two year check up. Once you have breast cancer, you are forever a cancer patient. Forever. Its possible you will will never develop breast cancer again, or you could within just a few months. Because my risk of recurrence in the first five years is relatively high, my check ups always come with a lot of anxiety. Because I've had a mastectomy, there will be no lumps to look for. Because I have implants there will be no mammogram. There is only blood work to look for tumor markers, and PET scans to find active cancer cells. If cancer is found, I will automatically be stage 4.

But for today, I continue believing I am fine, I am healthy, and I am here. 

Update: Snails Pace

Amos my love. This kid has stolen our hearts completely. He is a character for sure! He can be naughty and adorable at the same time. He'll be 12 in just a couple of months, wearing 5t pants. His jawline and face are beginning to change, as boys do. A "tween" in a toddler-sized body.

In June Amos and Audrey switched to a different school with a different approach to teaching that will be better able to address their post-institutional needs and behaviors. I LOVED their other staff, it just wasn't a good fit for those two.  They are now in the same school with Abel, and the three kids make up one class.  The staff are spending the summer program getting to know the kids, and in the fall will have their new plans in place. So far this change has been very positive for all three kids! Before they didn't acknowledge one another's presence, but now are seeking out each other! Amos' behavior at school is already improving. At home he's just a happy guy!

Amos' previous family has decided they will support moving forward with the adoption plan, but they will not be paying any of our legal fees. Thank you SO MUCH to those who contributed to the gofundme, as well as the t-shirt fundraiser. We were able to come up with half the attorney retainer fees, and Dean and I scraped together the rest. We're hoping to have our last $2500 by August 1st. Since there are three states involved we expect this to be a slow, complicated process that quickly eats through our retainer funds. 

Sunday, July 03, 2016

T-shirts! T-shirts! Get your T-shirts!

My friend Lisa has started a T-shirt fundraiser for us. Proceeds go directly to our adoption expenses. I have ordered shirts from TeeSpring in the past, and I LOVE them! The sweatshirts are my favorites. When the weather is right, they're my GO TO sweatshirts. My kids all have 3:21 shirts and they are very comfortable and hold up to my kids's rough and tumble ways. If you would like to order a shirt, please CLICK HERE. Please, don't be shy about sharing. ;-)

Saturday, July 02, 2016

The Phone Call

It was one of the coldest mornings of the winter of 2014 in Minnesota. After a late night with Angela who was sick, I was buried under the blankets of our bed, sound asleep when the  phone rang at 6:00 am. I looked at the number but didn't recognize it. I was going to ignore it, but instead at the last second slid the green "answer" icon.

I waited a second before saying anything, you know, to just remind the person it was really too early to be calling people. It wouldn't even be light out for another 2 hours!



My heart skipped a beat. I hadn't heard his voice in months. 

"Mom. I'm so cold. Can you come get me?"

"What? Cold? Where are you?"

"I'm in a barn. Mom its so cold. Please come get me. The guy left his phone on the back step for me to use but he told me he wants me out of here. Please mom. I'm so so cold. Tyler will know where I am. I'm at the barn in Waconia."

Tyler had spent the night with us. "Tyler, wake up. We have to go get Noah. Hurry, get up!" 

The sun hadn't come up yet. It had been snowing and drifting for the previous two days, and we made the 50 mile drive as fast as my minivan could safely navigate the roads. Tyler directed me to a dirt farm road. We drove a ways before he pointed. "Here. I think this is the driveway." It was hard to tell since it was drifted over. On the prairie, its hard to tell how deep the snow is if you're not familiar with the terrain. We could see someone had driven through the snow earlier, but it was starting to drift over again. It was a long driveway, and the thought of getting stuck in the cold, in the middle of nowhere made me hesitate.

But then I looked past the driveway and saw a small barn near the house. My boy was in there. 

"Hang on!" I said, as I punched the gas, plowing through the snow drifts, praying with each slide to the left and right that we woudln't get stuck. 

I pulled into the central area between the barn and house, just as he appeared in the door of the little barn. I got out of the van and went to him. His face was deathly white, his teeth chattering uncontrollably, so cold he could barely speak. I hugged him, and realized he was wearing several layers of sweatshirts.

He started sobbing. "M-m-mom. Its so c-c-cold. What t-t-took you s-s-so l-l-long? I c-c-couldn't stay aw-w-wake anymore b-b-but I w-w-was s-s-so afraid to f-f-fall asl-e-eep." 

I pulled him to the side door of my van. "Get in. Get all those shirts off. They're holding cold air and you need the heat of the van to warm up." I helped him pull of layers, shocked at the skeletal figure that was my son.

"C-c-c-can you g-g-get m-m-my s-s-s-tuff?"

I looked at Tyler, and together we got out of the van, shutting the doors to  keep the heat inside while we went to retrieve his things from the barn. 

To this day I wish I'd had the forethought to take a picture. Somehow I knew years later I would want it, to show him on the days he needs a reminder.  Inside the barn was a small room, about 10x10. I don't think it was insulated, just tin walls. I guess I don't really remember. What I DO remember were the conditions. A bare mattress on a dirt floor. Well, I'm assuming since it was a barn it was a dirt floor. It wasn't visible under the foot of empty booze bottles and trash. Just the thought turns my stomach into knots that my kid was living there. My "kid" who was 26 years old.

Tyler and I gathered up the few things he wanted. When we returned to the vanI asked when he had eaten last. "Two days ago my buddy bought me a couple hamburgers from McDonalds."

We got him home where his clothes were immediately deposited in the washer and him in the shower. Once he was warm, clean, and had a full belly he went to bed. He slept for the next 28 hours. Drugs will do that to you.

I prayed then he would come around. That he would realize this wasn't a way to live. That *this* would be his "rock bottom". That as an adult he was responsible for his own decisions and couldn't blame anyone else. He could't blame me, his dad, his former step-dad. This was all on him. I knew not to accept any blame for those same choices, nor would I support those decisions if he continued to make them. Yes, I know all about enabling.

We had been down this road so many times before. We had a meeting, he, Dean and I. I layed it all out on the table once again. He was using and could not stay here. No questions. If he agreed to treatment I would help him get it sorted out. If he completed treatment and was clean he could stay for a few months while getting his feet back on the ground. The choice was his.

He left the next day.

He chose the drugs over love from his family. That is the lie a drug addict believes, that the drug is better. Always better.

Being the parent of someone with a chemical addiction is not easy. You love your child and don't want to see them fail while at the same time knowing you cannot enable the behavior. But where is the line? What is "enabling" vs "actually helping". If you are living with someone with self-destructive behavior and/or addictions, get yourself into Al-Anon or similar group, and learn about enabling and co-dependent behavior. Being supportive of your adult child who is using is NOT the same as enabling, but being supportive does NOT mean you have to let them stay with you while you fix it for them. You, the parent, cannot accept blame for the decisions of the grown adult sitting before you. I do not accept responsibility for the decisions of my adult child. His choices cannot be blamed on anything from my life or his father's life. They are his own choices and he alone has to accept responsibility for them. If he is making a concentrated effort to fix his life then he has my full support. But he has to be sober.

If you are struggling with a teen or adult child who is using, please get support for yourself. Learn about enabling and co-dependent behavior. You can read more about it here.