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.

Lugnuts, Mosquito Bites and Peacefulness

The weekend after we got Jackson’s diagnosis Kevin and I headed to the mountains.  I feel most peaceful and happy when I am out in the middle of nowhere, in a forest, surrounded by mountains, and everywhere I look is awesome beauty.  So when we got the worst news of our lives we just stopped everything and went to the mountains.  That sense of peace and beauty helped us so much that we decided that would be our priority that summer/fall.  We didn’t care about all the housework or projects that needed to be finished, we went hiking every weekend with our son in search of the peace we so needed in our hearts.  Unfortunately, last summer those projects were looming and had to be completed so we weren’t able to get out in the mountains that much.  Now that we are home from our vacation and summer has arrived we have again spent our weekends working on house projects.  Until a couple of weeks ago that is.

Jackson and I were shopping at Target one day when I walked down the camping gear aisle by accident.  As we passed down the aisle Jackson became very animated and he started wiggling and laughing.  I stopped to try and figure out what he was doing and noticed he was looking at the tents.  That was when it hit me – the kid wants to go camping!  It was some kind of sign!  When we got home I told Kevin that Jackson wanted to go camping next weekend.  Kevin said “Let’s go!”  So last weekend after a great deal of packing (why do kids require so much stuff?) and precision loading of the car (there was not one inch of space left) we left early Saturday morning for Montana.  We are lucky to be only a couple of hours away from the beautiful state of Montana.  We got to Trout Creek campground by lunch time, set up the tent, unpacked all our gear, had some food and hit the road again to go hiking.  The trail to the hike, Heart Lake, was about 16 miles past our campsite on a dirt road.  The day was beautiful, warm with a light breeze, and blue skies.  Jackson was also beautiful.  Smiling, making happy sounds, and laughing all 3 miles to Heart Lake.  We spent a little time at the lake letting Jackson roll around and eating a snack and then we headed back to the car.  Again Jackson did amazing on the hike out, not a cry or unhappy sound.  Considering that he hadn’t had a nap all day and had been on the move pretty consistently we were pretty impressed.  It was about 6 p.m. when we got to our car and we were all ready for dinner and Jackson was ready for bed!  As we started driving back to camp I noticed the car was driving weird so I got out to check the tires.  Sure enough we had a flat tire.  I mildly started to freak out.  We got out the donut tire and lug nut wrench to change the tire.  This is when we discovered the lug nut wrench did not fit the lug nuts.  Which meant we were 16 miles away from camp, 23 miles from the nearest town, on a dirt road, at 6:30 p.m., with a hungry, tired baby, and no way to change our tire.  Oh and no cell phone service.  This was also around the time I began to freak out.  We were there for about 5 minutes when a woman (kind of a socially awkward woman) drove by in an old van.  I flagged her down and asked for help.  She actually sat there for about 2 minutes looking away from me and thought about it before saying she would see if she had any tools that would help.  She didn’t.  At this point Kevin suggested I take Jackson and ask her for a ride back to our campground.  I did not want to go with the woman!  But I had to for Jackson’s sake.  She agreed to take us to our campground, and after a very long, weird ride we got to our campground where I told the hosts (a retired couple from Spokane) what had happened and the man jumped in his truck with his tools and went to help Kevin.  Meanwhile I got Jackson back to our campground just in time for him to finally have an “I’m hungry and exhausted” breakdown.  I put him on my sleeping bag in the tent while I frantically made Mac n’ Cheese on the camp stove outside.  Unbeknownst to me, Jackson wasn’t alone in the tent.  When I went in to get him to feed him he had about 4 areas on his cute little face where mosquitoes had had their own dinner.  His forehead had one spot that looked like 3 big bites and it was already swollen (and it stayed swollen for a couple of days until I finally put some Cortizone cream on it).  I felt horrible.  My poor baby.  I am sure this is not what he was thinking when he saw the tents in Target!  I managed to get him fed and put to bed.  Needless to say he slept very soundly through the night.  Kevin made it back to camp in time for some dinner but left shortly after that to head to town to see if he could find us a new tire.  Which amazingly on a Saturday night around 8 p.m. in a small Montana town (Superior) he did manage to find us a new tire and have it mounted.  The guy even threw in a 4 prong lug wrench!  At the end of the day we had a new $200 tire, a mosquito bitten kid, stressed out Mommy, and a triumphant Daddy who took care of his family.  And as Jackson slept, Mommy and Daddy ate cookies and played a game of cribbage, which Mommy won.  Despite the unwanted adventure, it all worked out and we had a great weekend out in the fresh air!

Seriously?

A couple of months ago I found out that since Jackson is 3 and still in diapers he qualifies for free diapers under Medicaid.  What a deal!  After numerous phone calls to the pediatrician, Molina (who every time I talked to them gave me a different story about how to get the diapers), and a medical supply company (Norco), I finally figured out how to get them.  So last week I go to pick them up and I am happy because they are the same kind of diapers Jackson has always worn (Huggies).  However, the guy at Norco tells me that Molina may not cover the cost of them because they are “high end” and we may have to get the generic kind.  I’m a little bummed but I figure we will cross that road when we get there.  I just don’t want Jackson in some cheap diapers that will give him a rash.  He hands me the receipt and I am on my way.  When I get home I take out the receipt to file it and as I am walking to my desk I look at it real quick and almost walk into a wall.  I couldn’t believe it!  The medical supply company charged Molina $179.04 for a month’s worth of diapers!  Jackson doesn’t pee or poop that much!  For those of you not diaper knowledgeable let me explain.  I buy Jackson a box of 176 diapers at Costco about once a month.  That box costs me about $40.  I got 162 diapers from Norco for $179.04.  So Norco is charging the insurance company 4.5 times more for 14 less diapers.  Unbelievable!  And people think there is nothing wrong with our insurance industry.  Just charge the insurance companies the fair market price so people’s premiums will go down and give the lower and middle class who can’t afford health insurance a chance to afford it.  Some days I just get so discouraged living in America.  We may be the land of the free but we have also become the land of gross negligence.  I can feel a full tirade coming on so I am going to stop writing.  For now we have some free diapers and that is something!

Bed!

As most of you know I have been fighting Molina Healthcare to get Jackson a bed that will accommodate his special needs.  The bed I was looking at was called a SleepSafe bed.  Molina first denied it saying that we didn’t prove it was a safer option than a hospital bed.  So I had all Jackson’s doctors and some therapists write letters detailing why the SleepSafe bed was the best option (no gaps between the mattress and sides where he could get trapped and suffocate, 4 solid sides that would contain him when/if he had a seizure, twin sized so it would give him appropriate room to grow, etc.).  The documentation and evidence I sent to Molina to appeal their decision was overwhelming in that Jackson needed a specialized bed.  Molina then denied the appeal, despite the letters and supporting documentation, saying essentially “Whoops! What we meant to say was we don’t buy beds.”  Now if they had just said that in the first place I would have been like “Okay, what do we do now, how do we get Jackson a bed?”  But they didn’t, and instead they just pissed me off.  [Quick lesson:  Don’t piss off mothers of special needs kids unless you are prepared for the wrath of a Category 5 Hurricane and the preparation, storm and aftermath that accompany it].  So this week I called the Office of Administrative Hearings and requested a hearing in opposition to the denial.  I have an attorney over in Seattle at the Justice Project who has agreed to take Jackson’s case.  It’s not so much about getting the bed anymore as it is the way we have been treated.  Jackson has a medical condition (Epilepsy) that requires certain accommodations.  It’s ridiculous that we have to fight so hard to get a little boy a bed that he would be safe in.  Even if we lose I will feel like we have won.  Jackson’s voice will be heard by a Judge and we will send them a message that it is not okay to put families through this just because our kids have different, special needs.  It’s not okay to make the people who need help the most grovel, beg and plead for the things they medically need.  But meanwhile…..

A friend of mine found a friend of her Dad’s to make Jackson a bed.  This truly special man’s name is Dwight.  Last week Dwight delivered Jackson’s new bed to us and boy oh boy is it beautiful!  It has all the safety components of the SleepSafe bed but it is just so much more special because it was made especially for Jackson.  Every time I put Jackson in his bed I feel so thankful that Dwight was willing and able to make the bed for us.  No longer do I wake up in the middle of night and hear Jackson fussing because his leg or arm is stuck in the crib slats.  I know he is safe and comfortable.  It is so cute when I go in to get him and he has his little face smooshed against the plexiglass with a big smile on his face.  Plus his bed is just so cool.  I got in it myself one night and had Kevin shut the door and it was like being in a really cool fort (I kind of want one of my own now).  I’ll never be able to thank Dwight enough for making Jackson’s bed, I just hope he realizes how much his act of kindness means to my family. 

Dwight making the bed is just another example of how much Jackson has brought into our lives and how he touches others.  He has shown us that there are strangers out in the world who will take their time, effort and energy to do kind things for others with seemingly no reward.  Without Jackson I would have never met Dwight or even known about him.  Now I am thankful for him every time I walk into Jackson’s room.  And once again I am thankful for Jackson and his effortless ability to teach me lessons I didn’t even know I needed to learn.