Thursday, March 31, 2011
Wednesday, March 30, 2011
Tuesday, March 29, 2011
I think Charissa says it best, "Dealing with insurance companies gives me an almost-uncontrollable urge to swear!"
For the last week I have been on the phone for huge chunks at a time trying to get Dennis approved for his specialist appointments. Funny how no one else seems to be as concerned as me--yet they have so much to say without even knowing why I am calling them. Who should have known that Dennis needed a recent hearing test before he could be seen by the ENT? Am I overreacting to think that I wasted the last 20 minutes of my life on hold only to be told that he can't get an appointment until he has a new hearing test? How many months out sounds reasonable to you before I can get an appointment for my son? Three? What kind of plastic surgeon should Dennis see? Who knew there was more than one kind? Whose responsibility should it be to figure it out?
Yes, I have tried to get help from various state ran agencies, and no they won't help us because we have private insurance. No Dennis medical condition has not changed-- he still needs to wear a prosthetic. Medical care and insurance companies have gone a little crazy in the last five years if you ask me. Forget abot the mountains of paperwork they make you out and sign, they make it nearly impossible to maneuver through their automated service and when you do, if you are lucky they will put you on hold until you give up and hang up. I'm nearly convinced that is part of their plan. You almost need a degree to maneuver through the steps of being referred to a specialist-- no joke. And more often than not, I am left hanging, things unresolved only to be forgotten by every medical professional until I call to begin the process all over again the next day.
And this is not only the case for Dennis. Take my routine mammogram. I was referred to the hospital and yet I was the one who needed to make the call to initiate an appointment. I was a little miffed to find out that the soonest appointment was over a month away. "Oh you haven't been seen here before? Well I can get you in next week." I am still scratching my head with that one.
And don't get me started with prescription refills and recurring medical supplies. Getting Alex a new supply of catheters involved changing primary care physicians, and crying to the tech. What an ordeal that was.
Okay, I'm off my soapbox. Sorry. Sometimes I just have to vent.
Sunday, March 27, 2011
Since we have moved here, I have yearned for Him more than ever before. Oddly enough, it is in the desert where you are most thirsty. Maybe just maybe we came here for reasons above and beyond John's job.
I said I'd never homeschool, and now I am homeschooling.
I took our doctors and dentists for granted only to realize that God is the One true great Physician.
I always thought there would always be next time to get together with friends and family and now I miss all of them more than words can say.
It has not been easy, even after five months here and it is humbling to still feel overwhelmed by it all. I am normally a very strong woman. But I guess that is prideful, and God knows I need pruning in this area of my life. As I draw closer to Him, I am finding my true purpose in life and that is to love God and allow Him to work in me to further His kingdom. For now, my husband and my children are where He wants me to be, and it took moving to the desert to realize this.
If I am honest with myself I will say that even though I realize this, I still struggle with where He has put me. Like a child who really wants another piece of candy, I want more too. I want to feed the poor, move to Ukraine, open a ranch for troubled teens, fight the injustice, care for orphans, become a missionary-- which is all good, but for now God is telling me to just sit at his feet. Enjoy His presence. Be more like Mary and less like Martha. For now this is where He wants me, so this is where I will be.
Andrew and Paul had a baseball game, and it was freezing cold. Half way through I took all the kids home and came back with a hot chocolate to watch the rest of the game. It is so awesome to see how the boys are becoming more confident with each game. They are getting better too. Finally hitting a few balls here and there-- too bad Paul doesn't really know the game yet. He just sort of stands there-- whether he is supposed to run or after his three strikes. The coach has to tell him when to sit down. Thankfully all the parents there are really supportive and seem to be there for the fun of it-- not like some competitive parents can be.
Last night we watched The Christmas Miracle of Jonathan Toomey. There was nothing pish-posh about it! John and the kids came home late so that Adam could play guitar in church. A few of the other kids stayed with Grandma and Grandpa who are coming down in a few days. They'll ride back together. Galina's adoption is coming along nicely. Each of the kids are making their rounds to the dentist, and Dennis has an appointment coming up with a new occularist.
This week the kids have off for Spring Break. That means we get to sleep in. Woo-hoo! And finish up our rock river-- double woo-hoo! In just two short weeks, I am getting away for the weekend with some very awesome women. We will be right on the beach! I can't wait to see these women, I miss them so much. There is a few that didn't go last time, and I look forward to getting to know them better. If anyone wants to join us, there is one spot left.
Wednesday, March 16, 2011
And more importantly, our Heavenly Father made them in His image, and who am I to put a value on that? Love you heart Heather!
For nearly Davin's entire life, he has been EVALUATED. He has been evaluated by physical therapists, occupational therapists, ed. teachers, speech therapists and psychologists (my favorite....NOT!). When he first started receiving services when he was 6 months old, he would be evaluated in several of these areas every six months. I would get the results of the evaluations in the mail and just be crushed. On paper, it looked like he had made no progress and it ALWAYS talked about how different he was from "typical peers". It took me a couple of years to start putting those nice little papers in a drawer. I would not even read them. This has been my habit (for the most part) for the last 15 or 16 years.
When we moved a psychologist came to our house and evaluated Davin and also gave me some kind of assessment to fill out. I certainly know that on the papers I filled out (they were fill in the dot, not the kind where you could write answers), Davin didn't score very high. I mean, really. Some of the questions were so irrelevant to his life. For the psychologist, I was impressed as I watched Davin really pay attention and answer the questions. I also really do like the psychologist and she has gotten to know Davin and really like him.
However......yesterday I received the official evaluation results in the mail. I was so encouraged by how well he is doing in school and how well he did with the psychologist and by the things his teacher has been saying that I (like a silly girl who didn't know better) decided to take a look at the report. Bad idea. It showed that Davin's IQ was the lowest it could be and that he ranks in or lower than 1% of the population. Really?? Are you kidding me? Have you met this kid?
I shall go back to my old ways now. I will put those papers in the drawer and keep them, but never allow them to define who Davin is. My boy is not what is written on that paper and his abilities can't be measured by the regular standards. I know who he is. Davin knows who he is. He is funny. He is tricky. He is smart. He is loving and he is loved. I will not focus on those papers, those words. I will focus on who Davin is.
Tuesday, March 15, 2011
As time goes on, we are all enjoying homeschooling more and more.
I took Sveta and Jonathan for a dentist appointment today. After waiting for half an hour they told us there was an emergency and suggested we reschedule. I took that extra time to swing by WalMart and pick up two new toasters... finally. After five years, our old toaster is dead... literally. No one can say we didn't get every single penny's worth out of that old thing.
Over the past two days, Adam and Caleb have dug eight holes in our backyard. Now all I have to do is go and buy the trees. I can't wait!
Anastasia accidentally gave our bearded dragon indigestion by feeding it carrots that were way too big. Poor thing-- it turned different colors, stood on its two back legs and pooped with all its might. I of course thought it was on death's door and picked it up. It left me a big surprise on my shirt right as I was walking out the door to the dentist. Thankfully it is resting contently in my lap now.
After dinner, Adam offered to make a double batch of brownies. What a nice way to end the day.
Monday, March 14, 2011
For 7 weeks in Jan and Feb, our family provided respite care for a child with Down syndrome. This little one is much younger than our crew and it was nice (and slightly unfamiliar!) to have a baby around the house again. Olivia and Zoie were in heaven....because our little visitor was a girl! She quickly had us all wrapped around her little finger. The biggest surprise of all though was Xander. He LOVED this little girl. He watched her like a hawk. He was very careful around her. When he was in his swing in one of his stimming episodes, she would crawl right in front of him and he would just STOP. He never acts aware of anyone else when he's stimming. It was quite interesting to watch. She would go crawling by him and he'd lean over and pat her on top of the head and then go right back to his stimming (usually spinning) as soon as she was out of the way. He did this time and time again and every time, I was shocked. I don't know why, but Xander was very "in tune" with this little girl. I did make the comment to Robert at least 20 times a day once or twice that if a baby girl could get Xander to "snap out" of the stimming like that, then maybe we needed a baby girl ;)
Anyway, the point of this post is to talk about asking for help. Many times, families who are having a hard time after completing an adoption are afraid to ask for help. They worry that people who were against the adoption from the start will say "I told you so". They worry that those who have adopted and not had any deep issues will brush them off or tell them to just deal with it. They read blogs of other families that have adopted and think that they must be doing something wrong since it's not that easy for them. They worry about the judgement that often comes from "well meaning" people who don't really have a clue what the family is going through.I've thought about this a lot....particularly in regards to families who knowingly adopt children with special needs. In many cases, these families especially feel like they can't reach out for help because they somehow "asked for it" when they volunteered to parent a child with special needs. I really don't know what the answer is. I'm just thinking out loud here. All I know is that there needs to be SOMETHING....some way that it can be communicated to parents that are struggling that IT IS OK if things aren't going perfectly and that IT IS OK to ask for help.....and that sometimes, IT IS OK to say "I need a break, a chance to regroup, a different set of eyes to give me a perspective on what's going on" or whatever the case may be.
You know what?
It's even OK to say,
"This is not what I expected and now I don't know what to do"Can I just say, right here...right now....
IT IS OK to feel these things and to say these things.
IT IS OK TO ASK FOR HELP. IT IS OK TO ADMIT THAT LIFE AFTER AN ADOPTION IS NOT ALWAYS A ROSE GARDEN.I know that there are groups out there for families who have adopted children with special needs. Reece's Rainbow has an "After the Rainbow" group for families that have adopted children that were "found" on RR. But, I hear from people that they are afraid to share, afraid to "be real", afraid to reach out.....and it all goes back to that ugly word JUDGEMENT. I don't know how to move past that. But, I know that the need is there.So, for me, this is yet another reason why I am struggling more to be REAL on this blog. I don't want to just share the roses....I want to share the thorns too. Truthfully, Kullen's adjustment, attachment and his behaviors since coming home have been HARD to deal with. I've shared some of that on the blog. It is an ongoing, every day thing that we deal with....STILL....after 10 months. Just today, I said, "Why do you insist on doing these things. You know by now that we won't tolerate it, yet you continue to push and push." Yep, I KNOW it's attachment related. YEP, I know we have 7 years of orphan life/institutionalization to deal with and that ain't all sunshine and roses. And YEP, in the grand scheme of things, it could be so much worse. But, that doesn't mean it's not hard. It doesn't mean it's not so very frustrating. Guess what else? After 2 other adoptions, I was not so pleasantly surprised at how HARD it was to bond with Kullen. It was just as hard for ME as it was for him. He's still not completely bonded to me. That too is hard for me to even say because I WANT him to be. I want it to be easy. I want it to be a rose garden. I want to just forget where he came from and what he's lived through and to have him just accept me and my love and our family and this life with no issues. I want the act he puts on in front of other people (like at therapy....man, I wish THAT kid was around all the time) to be the reality we see 100% of the time at home too. I am THRILLED at how far he's come and all that he's learning....and every single day, I wish and hope and pray that it's not the day that he takes the 3 steps back (ESPECIALLY with the poop stuff!!!).
LOVE IS AN ACTION VERB
Sometimes, it's a deliberate choiceinstead of a warm and fuzzy feeling.
I don't really know what the point of this post is.I just felt like it needed to be said thatNOPE, life after an adoption is not always rosesand families should not be afraid nor judgedfor saying that or asking for help.
It was an honor for us to be able to help this particular family during this time in their life. I am THANKFUL that they reached out for help. But talking with them and talking to other people about similar topics makes me realize that there is a responsibility in the blogging "world" that those of us who blog about "life after the adoption of a child with special needs" might be neglecting. That would be sharing the it ain't all roses side of things too. I understand that most bloggers share all the good stuff. After all, we want to share the VALUE of our children. We want to show off all that they CAN do. We want to sing their praises and brag on them and show the world that no, having a child with a disability is NOT the end of the world. I get that....and I like to do all those things too. But, somewhere in there, I think there needs to be balance. Now, I can't help but wonder if maybe, I have somehow failed in my overall purpose of writing on this blog. YES, our life is "normal". Nope, my kids have not "ruined my life" or in any way kept me from doing anything I want to do (well, except go to church, but that's a HUGE issue for another post!). YES, I love my boys with all my heart and YES, they are more than capable of learning and they are making huge strides in their development. But, it's NOT ALWAYS EASY.
Yet, I do know why people don't share more of the struggles on their blogs. It goes back to that same "J word"....JUDGEMENT. Other members of the special needs community are very critical of those who share their struggles openly. I've seen it. I've experienced it. If you share anything other than "my life is perfect with my child with special needs", then you open yourself up to huge criticism...and most of it's going to come from the very community that you'd think would support you.
As I said, I don't know what the point of this post is. It's mostly just to get these thoughts out of my head.
What is the answer?
How do we let people know that when they are struggling....whether it be after an adoption(which is primarily what I'm thinking about in this post) or just in every day life with their child......that it's OK to ask for help?
How do we.....those who blog about our lives with children with special needs (especially those who "chose" this life)......provide a BALANCE so that people reading our blogs don't think "There must be something wrong with me that I can't do this as well as _____."
Since I'm on a roll and just speaking my mind on these subjects, let me say this as well.....
If you hear that a family is getting respite care...don't judge. YOU DON'T KNOW what is going on.It's real easy, when you haven't walked a certain path, to sit back and criticize a family and to make them feel bad about asking for help. It is THAT kind of attitude and judgement that makes families hesitant to ask for help when they need it. Raising a child with special needs is NOT always easy. Raising a post-institutionalized child with special needs is even harder at times.
I certainly don't have all the answers. So, I'll shut up now and hope that all of you can follow my rambling thoughts.
Sunday, March 13, 2011
Now I need to fill out all the paperwork for Galina's adoption. We are already scheduled to have our first social worker visit next month!
In the backyard, we began our riverbed of rock that is going to run through the side yard. The fun part is that we are gathering all the rock from our backyard. "Just one more bucket full Sveta." John and the boys made a raised planter box for the garden we are going to plant in a few weeks. Even though most of us have aching backs and blistered hands, we are excited by the progress. After visiting the nursery and Home Depot, I am dreaming of new sand for the sand box, a wooden bridge to cross our rock river, and lots and lots of trees, shrubs, and flowers. I can already envision it-- our version of the Garden of Eden.
While getting the two little boys ready for bed, Dennis asked me, "Can you teach me to drive a car?"
"Sure Dennis, in eleven years I will teach you to drive a car."
Thursday, March 10, 2011
Suggestion is for him to come to school well rested. Since when is nine plus hours a night not enough?
Why didn't I know of this sooner?
My gut reaction is to yank him from school. Just a few weeks ago, I met with his tutor and she told me something totally different.
I already called the school and left his teacher a message.
Tuesday, March 8, 2011
But she is. And I am blessed.
I noticed that her arm was red and cold long after coming in from outside and so we began a series of tests to see if it was anything serious. After x-rays came back normal, the doctor ordered additional tests. How thankful I am that her blood work for Lupus and Raynaud's disorder came back negative.
Praise the Lord!
Anastasia is no longer speaking Russian... rather she has become a parrot repeating everything I say. It is very cute, and motherly, and I love how her confidence is building. She can read quite well, and is now learning how to write simple sentences. Since we began homeschooling she has learned to tell time, and to recognize the value of money. She is working on concepts such as before, after, more than, less than, altogether, greater than, the sum of, and half past. These are hard concepts for any child to learn let alone a child who is learning English for the first time as a 12 year old.
Anastasia enjoys helping around the kitchen, and absolutely loves being outdoors with Misty and Dolly. She is an extraordinary artist and has finally discovered girly games on the Internet. Anastasia is a homebody-- which is so refreshing!
After nearly six months she finally decided to spend some of her birthday money after much encouragement. She bought gum, a headband, some beaded necklaces, and chapstick. Her excitement in her new found freedom of shopping made me smile from ear to ear. And yet she hasn't asked to spend the rest of her money and actually gave some of it to a sibling for their birthday.
Saturday, March 5, 2011
We went to the park! And he asked to swing high!
All the kids enjoyed the beautiful fresh air.
Julia and Anastasia frosted the cupcakes. Grandma and Grandpa came down to celebrate too!
Alex made it quite clear that these were his birthday candles.
But Dennis managed to sneak up behind Alex and help him out a little. Thankfully Alex didn't notice. But when Dennis had the nerve to reach out to grab one of Alex's candles to lick it, Alex wouldn't have it. Understandably so. :)
Alex loved opening up his presents. He had finally reached the age to get a handmade treasure chest from Grandpa with special hand painted letters by Grandma spelling out Alex's name.
Today we took a family trip over to see the Cabazon Dinosaurs! They were so cool!
Initially, Alex was very scared. By the end of our visit, he was one brave boy!
The kids had fun looking for rocks with words on them. They got a prize if they found one! A few of the girls found three!
Wednesday, March 2, 2011
by Andrew Reed
Wishes to have my class listen and pay attention.
Dreams of having a good job when I'm older.
Wants to be an Astronaut and explore Pluto.
Wonders if people in my class can pay attention.
Who fears mountain climbing and falling off.
Who is afraid of Dentistry.
Who likes when my class is quiet and respectful.
Who believes in Santa Claus.
Who loves Jesus.
Who loves family.
Who loves water.
Who loves chocolate.
Who plans to have 15 children.
Who plans to go up to my brother's house when older.
Who's final destination is being with my family.