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. 

Reviving Respite and Foster Care

Back in May I found out we qualify for 67 hours a month of respite care.  Basically that means that the State of Washington will pay someone to come into our home to take care of Jackson while I do whatever I want or need to.  It took me a while to wrap my head around that.  I felt kind of weird about having someone take care of Jackson when I can do it just fine.  There are definitely days where taking care of him is a lot of work.  But that goes for every child out there, special needs or not.  I’d be more than happy to give my hours to some single mom who never gets any time to herself.  Unfortunately it doesn’t work that way.  So after a lot of “You should do it!” from friends and family, I decided to go for it.  I wanted to interview someone first before they started taking care of Jackson.  The first girl I interviewed wasn’t a good fit.  I didn’t like her personality and couldn’t imagine her working in my home.  The second girl, Heather, was great.  So for the last 3 weeks now Heather has been coming to our home and caring for Jackson.  The first two weeks she just came one day for 5 hours.  This week she came two days for 5 hours each day.  Am I liking it?  YOU BET!  I can’t believe how much I get done.  Phone calls, grocery shopping, errands, household chores.  I like it because Jackson is still here with me and I can stop anytime and give him some love.  Along with all the little things I get done I have a couple of big projects I am working on.  First I am refinishing my Dad’s dresser and once that is done I am going to finally paint some of these brown walls in my house.  The last piece of furniture I refinished, the dining room table, took me 11 months.  I just never had time.  At my current rate of working, when Heather is here, the dresser should be done within a month.  It still feels a little weird having someone take care of my little boy, but he really likes Heather and it is good for him to have interaction with other people.  Another good change in our routine.

As some of you know, Kevin and I have been trying to get licensed to be foster parents.  In June we finally started the process.  We turned in the required paperwork, have taken the 27 hours of training classes, bought bunk beds and redecorated the guest room, and just last week had our first home visit.  We have a few minor changes to make to the house – latches on low cabinets, lock on the medicine cabinet, buy some kids’ clothes and toys, etc.  The licensor will be back next week for another visit and inspection.  If everything goes well we should be licensed by the end of August.  I’m nervous and excited.  Our ultimate goal is to adopt and grow our little family.  It may take a while to get our forever family, but I know that out there somewhere there are some kiddos waiting for a mom and dad just like we are waiting for them.  They may be 3 years old, they may be 17.  Either way, their room is waiting for them. 

Giving Up

For those of you following my fight against Molina Healthcare to get a bed for Jackson, you should know I have decided to give up the fight.  It wasn’t an easy decision but one I am actually pretty relieved about.  A couple of weeks ago the attorney in Seattle who was taking Jackson’s case called with some interesting/good news.  She had found a way to get Jackson a bed that was pretty foolproof.  Although it was foolproof, it wasn’t easy, and was extremely time consuming.  Her advice was to ask for a continuance for the Administrative Hearing that was already scheduled, go through the lengthy process, and see where we were then.  As I talked with her and took notes about the process, I really started thinking about why I was doing all this.  Jackson now has a beautiful, safe, awesome bed.  Our problem has been solved.  My motivation was to give Jackson a voice in court and let Molina know that their members are not just numbers, they are people, and they have a responsibility to them.  And I still think that is important.  However, I also think my time and energy could be better spent playing and working with Jackson.  Dragging him to more doctor appointments, filling out more paperwork, and making more phone calls is not the best way to spend my time with him right now.  So I am giving up.  Perhaps I am now part of the problem, another person giving up the healthcare fight.  But it turns out in the end Molina wouldn’t have bought the bed anyway, the State of Washington through the Department of Social and Health Services would have bought it.  One good thing has come from my giving up though.  I now know the process to get a bed for a special needs child and I can share that information with other parents who don’t have Dwight’s (the man who made Jackson’s bed) in their lives.  Now I can spend my afternoons in the park swinging Jackson or in our backyard sitting in the pool with my boy.  Exactly where a Mom should be on a nice summer day.

Award

I’ve been debating about whether or not to put this post up.  I don’t want to sound self-serving or egotistical but I am kind of proud of it, so here goes. 

In June, Kevin and I were given the “Outstanding Parents of the Year” award from the Spokane Guild School.  When the director of the school called to tell me we were getting the award I wasn’t quite sure what to say.  Mostly, I didn’t feel like we deserved the award.  I don’t think I do anything outstanding as a parent.  If anything, I think there is so much more I could and should be doing.  I get so busy running Jackson around to school, therapies, and doctor appointments that I mostly don’t feel like we have time to do anything fun together.  And I really should be doing more therapy with him at home, I just feel like after all his appointments he needs a break when we are home.  Besides, a lot of the time I can’t get him to do things with me that the therapists do.  Perhaps the “Mediocre Parents of the Year” award is what I deserve.  Nonetheless, we were given the award.  I missed the award ceremony because I was in Colorado on vacation at the time, so Kevin accepted the award for us.  The Guild School did record the ceremony so I was able to watch it and hear what was said about us.  The thing that struck me about the award presentation was that this award wasn’t just about one parent being any better than the next, but looked at those that tried to give back and help others.  That comment meant more to me than anything.  Since Jackson was born, my little family has been shown so much love and support that it is overwhelming.  Our friends and family have stuck by us and celebrated our son with us.  Strangers, like Dwight, the man who built Jackson’s bed, have shown us honest kindness.  How do we just accept all that without spreading it to others?  We can’t.  Every little lesson I learn along this journey I file in the back of my mind and hope someday I will be able to share it with another mother or father of a special needs kiddo.  If someone would have told me 5 years ago that someday my focus and desire in life would be to help the parents of special needs children I probably would have laughed and said “I don’t think so, I’m not good with special needs kids.”  Well who’s laughing now?!  Me.  Thanks for the award, I am proud of it.  Now I just need to earn it.