Coming up for air

I recently saw a quote by Tolstoy that made me laugh to myself.  It said:  “True life is lived when tiny changes occur.”  Well considering the most recent changes in my life (which are NOT tiny) I am certainly living!  Living the life of a chicken with her head cut off.  The life of a marathon runner.  The life of a CEO.  You get the picture.  Our foster daughters have now been with us for 2 weeks and I am sure things will settle down soon (see I still have my sense of humor).  The girls came with a few stuffed animals, books, and blankets.  Pretty much no clothes that fit, no diapers, and no toiletries.  I remember thinking I was prepared and ready for some foster kids.  Boy was I wrong.  Getting clothes that fit them took over a week.  Getting all the paperwork, phone calls, and appointments they need is something I am still working on.  Every day something comes up that seems to be an emergency I have to deal with.  I’m exhausted.  And shopped out.  Clothes, groceries, double stroller, Halloween outfits, potty (for the 2 year old), a princess kitchen and play food, more clothes, more groceries, toothbrushes, and a new car.  All things I’ve had to buy in the last two weeks.  Anyone ever went car shopping with 2 toddlers and a 9 year old?  Meltdown city.  And I am talking about me, not the kids.  Just ask my husband, it wasn’t pretty.  But we are finally getting somewhere and settling into a routine.  The girls are opening us to us more and more and we are finding out how sweet they are.  They both have some anger issues but are handling them pretty well.  They love Friday Pizza and Game night.  So do I.  It is fun to hear their laughter and watch my husband chase them around the house.  It’s been a little hard on Jackson, which has made me cry a few times.  I know he misses his Mama’s 24/7 attention and I miss giving it to him.  I’ve had my moments of missing my little family.  It’s definitely been an adjustment.  But this is what Kevin and I wanted, a house full of kids.  That comes with all the ups and downs we are facing.  Yesterday the woman who has been transporting the girls to their parent visits said to me “You just don’t realize what you have done for these girls.  They are happy, laughing, and talking.  They weren’t like that before they came to your house.”  I needed to hear that.  When fits are thrown and dirty looks are thrown your way it starts to weigh on you.  To hear someone who knew the girls before say that we are doing something right gives me some hope. 

My life is nowhere near what I thought it would be.  I’m a stay at home mom of a child with special needs and 2 foster children, who now drives an SUV.  Life is definitely full of surprises.  Some happy, some not so happy.  The trick is finding out how to respond to those surprises that enables you to move on with life.  Something I am learning, surprise by surprise. 

Check this out!

If you have 5 minutes (you know you do) check out this video.  The little boy, Aaron, has bilateral polymicrogyria.  Jackson has unilateral polymicrogyria.  Aaron is so cute and this video makes me smile every time I watch it. 

http://www.youtube.com/watch?v=M6qAxMXu9N0

Where’s Jackson at?

Lately a lot of people have been asking me how Jackson is doing so I thought I would give you all an update on the kid.  Where to begin?  Well first, Jackson is incredibly adorable (bragging mom moment), as most of you already know.  Other than that, he is still seizure free (yea!).  He hasn’t had a seizure since April 25^th at around 8 a.m.  Now that his brain has had a 5 month break, we have been able to enjoy the little boy that Jackson is.  And let me say he is a silly little boy who is happy and giggly and cuddly.  He is still making progress, although slowly.  I think I had this idea in my head that once the seizures stopped Jackson would just take off developmentally and that hasn’t really been the case.  He is making strides, but not quick enough for this impatient mom.  He is definitely more alert, focused, and active.  But he still has his moments of what I call “blah-ness”.  He’s just kind of in a blah mood and not too excited.  It’s hard to get him to do anything during these periods.  He is doing much better during his therapies though.  Whereas before when he had seizures he would fuss and complain during therapy, now he is much more patient, laughs at some of the things his therapists do with him, and actually participates.  Big improvement.  Jackson is sitting for much longer periods of time also.  He still can’t get into the sitting position by himself.  I, however, think he can get into the position he just isn’t motivated to.  That is one “problem” with Jackson - his lack of motivation.  He is just kind of a laid back kid and I think he knows that Mama or Dada will get him into the position so why bother?  Getting him motivated has always been an issue.  He can also stand very well on his own now (once we stand him up) but you have to keep a light hand on him or he will fall over.  And he is standing for longer periods of time.  His walking is a slow process.  Some days he will walk one foot in front of the other (with support), other days he just wants to jump up and down and won’t take any steps.  He tends to walk pretty well for his physical therapist but not so well for me.  Little bugger.  Sign language has been another progress for us.  He is signing “more” and “eat” and was doing “please”.  For some unknown reason has stopped signing please.  Which has left his speech therapist and I totally perplexed.  So we are working on “please” again.  One thing that has been fun is that he is learning how to drink from a straw.  Jackson is making good progress on this.  Drinking out of a straw may not seem like a big deal but it is.  Not having to carry a sippy cup in my purse when we go to a restaurant or grab some fast food on the run is definitely a bonus.  So that is where our boy Jackson is at.  Slowly, but surely, getting somewhere. 

As for where the Klim family is at, we are currently residing somewhere between overwhelming insanity and ordered chaos.  Last week Kevin and I officially became foster parents to two girls, Lillie is 9 and Vivionna is 2.  Adding two more to our little family has proved to be a tad bit challenging and rewarding.  The fact that the girls came with pretty much what was on their backs and not much else has added a sense of urgency and necessity to our daily lives.  We are finally getting them settled clothes wise and that is helping.  They both seem to be adjusting fairly well and are very sweet girls.  They’ve been through a lot and we are just glad we can provide them with a sense of security, safety, and stability.  Oh and some love.  Jackson has had a little trouble getting used to not having Mommy 24/7 but he is starting to get used to his new household life.  And for the first time since Jackson was born, chicks outnumber the dudes in my house!  Finally!  We have a long journey ahead of us as foster parents, so wish us luck!

Why does everything have to be so difficult?

Lately it seems to me that everything I try to do for Jackson is difficult.  Get him a bed – difficult.  Get him diapers – difficult.  Get him an appointment at Seattle Children’s Hospital (been working on this for 3 weeks now and still no appointment) – difficult.  Some days I just want to scream at the top of my lungs.  It seems to me that those of us who have a few more struggles with our kiddos should get some kind of “cut in line for free” card that makes things a little easier.  Yeah, right.  I suppose this is why we are “special” parents.  We learn to accept that everything is going to be difficult and that it will just be a way of life for us.  Like last week, I was on hold for 47 minutes to talk to a Medicaid employee.  When someone answered I was just so happy to be talking to a real person that I didn’t even get upset when she told me she couldn’t help me and that I would have to call another department.  Which of course entailed another long wait on hold.  Despite all this, I am reminded every day how lucky I have it.

Just turn on the news and you see the stories of our fellow Americans who have lost their jobs, homes, and ultimately their hope.  There are parents who have nowhere to go with their children.  Kids who don’t know where they will sleep every night.  Now that is difficult.  I can’t imagine what those families are going through.  Times are really tough in our country right now and I think for most of us who are doing okay we forget that.  It’s a little overwhelming to think of all the people that need help that live right by us.  And what about the military families?  Now they are heroes.  They leave behind their wives, husbands, children, parents, to serve for our country.  Whether or not you agree with the reason we are over in other countries is beyond the point.  The point is that we are over there and families are left behind.  I have no idea how some of these military wives do it.  They are alone, raising the children by themselves, going to bed every night wondering if their husband is going to come home alive or in a casket.  That kind of constant worry is beyond my comprehension.  Even though I may have to deal with a lot of phone calls, being on hold for long periods of time, fighting medical companies, and exploding buildings, it really is nothing compared to what others are going through. So tonight when you go to bed do what I do, rejoice in the fact that you have a bed, a warm house to sleep in, food in your cupboards, and that your family is safe.  That is all that really matters in the scheme of life. 

All I can do is Laugh!

When the Department of Developmental Disabilities caseworker came to do an assessment for respite care for Jackson she mentioned that because Jackson was 3 years old the State of Washington would buy his diapers.  So it took me a couple of weeks but I found a place (Norco) that would supply the diapers that Jackson has worn since he was 3 months old (Huggies).  However, they charged the State over 4 times what I would pay for the diapers in the store.  So when I called them to get our second supply of diapers they informed me that they would not provide Huggies because the State would not reimburse them due to how expensive they were.  My response to them was that if they didn’t charge ludicrously high prices the State would pay for my son’s diapers.  The guy on the phone said that they didn’t charge high prices, they charge what they pay for them.  Yeah right.  So I told Norco I would take my business elsewhere.  Again I was on the hunt for a company that would supply diapers.  I must have called 10 companies only to be told they either weren’t taking new clients, didn’t supply diapers, or were unable to deliver to the Spokane area.  But after a couple of weeks of calling I did find a pharmacy in the Valley that would supply diapers but not Huggies.  I looked up the name of the diapers they would supply and they seemed okay.  I decided we will try the diapers and if they give Jackson a rash or are super cheap then we at least tried.  Thursday I went to the pediatrician’s office to get the required prescription.  Friday I headed out to the Valley with two toddlers (Jackson and the little girl I babysit) to the pharmacy.  I filled out the paperwork (fun times with two kids to manage) and left the pharmacy because it would take a couple of days to get the approval from our much beloved insurance company Molina. Finally, after a couple of weeks of calls, paperwork gathering, and a trip to the pharmacy we are finally lined up for diapers.  At this point, you are probably wondering what the point of this post is and would I please hurry up and get to it.  Here it comes.  This morning (Monday) I go into my bedroom to get dressed.  My husband is in bed watching the local morning news.  As I get dressed I am listening to the news.  The breaking news this morning was that an office building exploded and caught fire.  (Can you see where I am going with this?)  As I look up at the TV, there it is, the building that exploded and is on fire.  The same exact building that housed the pharmacy we went to on Friday!  You may be thinking “What are the odds of that happening?”  That was exactly what I was thinking!  I’m going to say the odds are 1 in 18 million.  But I could be off.  After a few minutes of oh my gods and thinking of all the time it took me to get the diapers ordered, I finally just threw my hands up in the air and laughed.  I mean it really is kind of a funny story.  It has given me quite a few laughs today.  Of course the evening news covered it as well so I had a flat out laugh fest this evening around 6 p.m.  So what’s next?  Who knows!  My guess is that my paperwork is ashes and unless they backed up their computers off-site the pharmacy will not have any records of us.  But the good news is that we just got coupons from Costco and there is one for $6.00 off Huggies.  So if you see me in Costco buying Huggies diapers come over and laugh with me. 

Back to Crazy

Where does the time go?  Seems like I just put a post up and then I realize it’s been 2 weeks!  We’ve been busy enjoying the last of our summer.  Trips to the park, a long 3 day weekend of camping, painting the inside of the house, and working in the yard has consumed our days.  But life headed back to our normal routine today when Jackson started back to school.  Of course, the start of school was not without some drama provided by the extremely unorganized, unprepared and downright ridiculous Spokane Public Schools administration.

Last year Jackson attended Roosevelt Elementary.  It is not our home school, but that is the only school that had room for Jackson.  They offered to bus him to the school but I refused that since Jackson was still so young and not used to going to school.  But I told them last year that this school year I would like him bused.  No problem they told me.  I also told the social worker, the woman in charge of transportation and the special education department that I would drive him to summer school since he was going to a different school for the summer that was on the other side of town.  What do you think happened this summer?  Yep, the bus kept showing up at our house every morning.  Finally after me telling them a couple of times, and my neighbor telling them a couple of times, the bus finally stopped showing up.  So as school approached this year I called the transportation department to find out what time they would pick up and drop off Jackson.  They said they had no record of Jackson and had no idea what I was talking about.  So I called the special education department, talked to the secretary there and put the request in.  A couple of weeks went by and I still hadn’t heard anything so I called again but couldn’t get a hold of anyone.  Then Jackson’s teacher at Roosevelt called to invite us to an open house and mentioned that the school district had me down as driving Jackson myself.  I told her no, I wanted him to take the bus this year.  She said she would look into it.  Meanwhile, someone from the school district administration calls me looking for “Stacey Jackson”.  I explained my first name was Stacey and my son was Jackson.  She was very confused.  At this point, I am getting pretty annoyed and on the verge of saying some not so nice stuff. Then she asks me if I have ever heard of a child named Jackson Klim.  Seriously?  Um yeah, I gave birth to a kid by that name.  She then proceeds to tell me that Jackson will now be going to Sheridan Elementary because they have room for him there.  Say what?  I explained that I just talked to his new teacher at Roosevelt and we are all set to go there.  She tells me that if I want Jackson bused then he has to go to Sheridan.  After a few minutes of back and forth I finally say something to the effect of “Look lady, you people at the district office seem to have no clue what is going on.  Jackson’s only been in your school district like 2 months and I can’t even count the mistakes you all have made.  I am so pissed off right now by your incompetence that I am hanging up on you.”  And I did.  Then I called Kevin to talk me down.  Which he did.  Then I made a few calls to some people at Roosevelt to see what we could do.  Basically it came down to this – I drive, Jackson goes to Roosevelt; I want Jackson bused, he goes to Sheridan.  So last Thursday (2 school days before school starts) Kevin, Jackson and I go to both Sheridan and Roosevelt to meet the teachers.  As we walk into Sheridan we are greeted by the teacher.  I know her, she was Jackson’s summer school teacher.  I don’t remember if I ever blogged about his summer school teacher.  So here’s the gist – I can’t stand her.  She isn’t warm, friendly, courteous, or kind.  I nearly pulled Jackson out of summer school because I couldn’t stand her.  Almost every day I picked him up she would say “He was grouchy this afternoon” and I would say “It is too long of a day for the little ones” (Spokane Public Schools saves money by condensing summer school classes into two days a week, 5 hours a day, without regard to the fact that that is too long of a day for special needs kiddos) and then she would say “Well it’s a long day for me too”.  Yeah, she’s a gem.  So right away Sheridan and bussing is out.  We then went up to Roosevelt to meet Jackson’s new teacher Liz.  She was great.  She was warm, friendly, courteous and kind and had all sorts of ideas on how to best teach Jackson and make his learning experience beneficial.  So I’m driving Jackson to school this year.  I am fine with that.  Having a sense of mind that your child is in the best situation to help him learn is worth the 2 hours of driving per week.  And picking him up and seeing the smile on his face because he was happy at school just makes my cup runneth over.  He had a great first day and was in the best mood ever when I picked him up.  The kid loves school, just like his mama. 

So summer is over, school is back in session, a new therapy schedule is in place, and the craziness will take over our life again.  Despite all that, I am back to having a couple of hours of me time in the morning.  I can hear the Rockwood Bakery calling my name.  Reading, writing, eating scones and drinking hot chocolate in the neighborhood bakery is this mom’s delight.  Oh I just love the school year!

What is Left Unspoken

Imagine you wake up one morning and your _____ (enter husband, son, daughter, mom, dad, brother, etc.) could not talk.  They also could not write.  Nor point.  Nor walk.  They can’t even use any kind of body language to get their point across like shaking their head yes or no.  How would you know what they wanted?  How would you know what was wrong with them?  How do you think they would try to communicate with you?  It’s a tough one isn’t it?  Welcome to my world with Jackson.  Some days it is frustrating.  Some days are infuriating.  Some days I just want to scream and cry “Why?!”  Other days we somehow get through the day by doing a lot of guessing and some assuming.  But things are changing here in the Klim house. Jackson is finally starting to learn sign language.  We are slowly getting somewhere.

Many moons ago I got it in my head that it was time to start teaching Jackson sign language.  That project lasted about a week before I gave up.  I just didn’t think he was ready.  Plus he doesn’t use his left hand or arm very much, if at all, because of his brain malformation being on the right side.  So I determined he couldn’t do sign language and that was that.  Maybe he wasn’t ready then, who knows, but he surely is ready now.  Many of you may remember my previous post about that damn “more” button.  The fact that Jackson caught on to the purpose of the button so quickly showed us that he was ready and willing to communicate.  So we altered the “more” sign a little (he pats or bangs his open right hand on the table or his leg to indicate “more”).  He did so well learning that sign that we then moved on to “eat”.  It is another sign that you only need one hand/arm for.  For those of you who know Jackson and his insatiable desire for food you can imagine the very short period of time it took for him to learn this sign!  I would say it took about a day, maybe two.  This one sign though has really changed our world.  It has given Jackson a voice and I personally think it has given him some self esteem and confidence.  I used to have Jackson on an eating schedule because I just didn’t know if he was hungry but I also had to ensure he was getting enough to eat every day.  Now I am able to let him tell me when he wants to eat.  However, he loves food so much that sometimes after I get him out of his highchair after eating he won’t even wait 5 minutes before he is making the “eat” sign again.  Nice try Jackson!  I think Jackson would be happy just sitting in his highchair all day while I continually put food on his tray.  So the “eat” sign has been a success.  Now we are working on the “please” sign.  This one is a little harder.  But he is slowly getting it.  Our trying days are not over, but they are getting better.  Jackson being able to communicate in at least one way with us is helping him become less frustrated which makes me less frustrated.

Another thing we are using is pictures.  I have taken pictures of toys, people, strollers, swings, and some food.  Getting him to recognize pictures and associate them with real objects is important for him to be able to make choices.  For breakfast every morning I show him a picture of French Toast and a picture of a bowl of oatmeal (I took the pictures of real food).  I then ask him what he wants for breakfast “Do you want toast or oatmeal?”  Then I wait to see if he (1) looks at one of the pictures and (2) touches the picture he is looking at.  If he does then that is his choice and that is what he has for breakfast.  If he doesn’t make a choice within a couple of minutes I make a choice for him and touch his hand to the picture and say what it is.  He usually makes his own choice and it is pretty awesome!

Jackson’s speech therapist has sent a request off to the insurance company to purchase a communication program called Proloquo2Go for his IPad.  She has used it with him in therapy and he picked right up on it.  It already has preloaded pictures but you can also add your own.  You put the pictures on the screen and Jackson can touch what he wants.  For example, his speech therapist has done a split screen with a picture of water on ½ the screen and a picture of goldfish crackers on the other.  She shows it to Jackson and he has to look and touch what he wants (water or goldfish).  When he touches the one he wants the program will talk and say “water” or “goldfish”.  That way he is hearing the word and seeing the object and making an association.  And he is able to tell us what he wants, not what I think he might want.  This program is pretty amazing and a lot of non-verbal children and adults use it as their sole way to communicate. 

We are definitely making progress in the communication department.  It is just a start though.  We have a long way to go.  I have to say that seeing what Jackson is capable of has made me feel like I have underestimated my boy.  I really didn’t ever think he would pick up signing like he has and I truly never thought he would use the communication program on the IPad as well as he has.  I just didn’t think he had the cognition to do it.  Again the kid has proved me wrong. I sincerely hope that Jackson spends the rest of my life making me look like an idiot by proving me wrong and surprising me.  I really, really do.