special needs

Stress Free Holidays?

I always have great plans for how I’m going to dress Darling Boy for Halloween.  This year I was thinking about it over the summer and decided to have him dress as  Doctor Who and we could make his wheelchair into a T.A.R.D.I.S.  I enlisted my crafty friends to help me execute this and Stark Raving Mad Mommy found this adorable  wheelchair T.A.R.D.I.S.   It’s just what I wanted.

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so adorable, he ‘s dressed as the 11th Doctor.

But that was August.   When October rolled around I thought about it and no other action occurred.    Of course, I felt guilty about it.  Guilt is a given for someone with Irish/Italian ancestry with some long years of Catholic education thrown in.  (16 years, people, I even went to a Christian Brothers college.)

For the past several years, due to the magic of the internet, I’ve seen more and more cute ideas of how to incorporate a wheelchair into the costume.  I am including some pictures that I got from the 3E movement.  I love all of them and admire how these parents are advocating for their kids to be included.  But really I am lucky I can wield a glue gun without burning myself.

Of course, this gets me into the whole train of thought that I should be able to do this.  Despite the fact that I generally suck at constructing anything.  For instance, The oldest daughter put together D.B.’s stroller out of the box without reading the instructions and she was only 14 at the time.  She has that kind of brain.  The same task would have taken me several hours and I would have at least one extra part that I didn’t know where to put.  To add to that, I just don’t have  the energy to transform his wheelchair into a blue police box. This is when I wish I taught at Hogwarts and could just magic it up.  Besides,training in nurses and doing my normal every day stuff like working and keeping up the house, dr. appointments,  and ferrying  kids to sporting events seemed to fill the day.

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The 9th Doctor, played by Christopher Eccleston

I came across this blog post, Lowering the Bar and I started to  feel better about my lack of effort.  Really, we have the whole costume thing planned out.  He ‘s going as the 9th Doctor.  There are 11 of them, people, and the 9th  is the easiest.  I bought him a black v neck t-shirt and he’s going to wear his dad’s leather jacket.  I’m putting this quote on his communication device:

“I’m the Doctor.  I’m a Time Lord. I’m from the planet Gallifrey in the constellation of Kasterbous.  I’m 903 years old and I’m the man who is going to save your lives and all 6 billion people on the planet below.  You got a problem with that?”

Voila: DoctorWho.

Life is much easier for me when I lower my expectations.  I remember how we would recycle Halloween costumes that we got from the five and dime store.  It was so exciting to go up in the attic and get the costumes down to see what fit.  Then we started making our own costumes as we got older.     I remember that every Halloween we would go to a neighbor’s house after trick or treating and have cupcakes.  They had 5 boys and the dad always came up with some creative costume like being a table with fruit on it or a comfy chair.  We loved it but we never expected it from our parents.  He was the exception when I was growing up.  Now we hype up every damn holiday to the point that people get stressed over it.  I am going into this holiday season with a new calmness.  I will get done what needs to be done so that we can enjoy each other.  As the kids get older, we try to cut down on presents and do things that require presence.  This may involve going to the movies or seeing a play.  The Oldest Daughter and I want to create memories for our kids of doing things together.

What are your thoughts on the upcoming holiday season?  Do you think we make things more difficult by having such high expectations for ourselves?

Seizures Suck

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Seizures: a lightning storm in the brain

This will just be a quick little post.  On Thursday, Darling Boy had a seizure.  While this is nothing new, he hasn’t had one in 6 weeks.  That’s the longest he’s gone without a seizure since he hit puberty.  So,  I was coasting along thinking, “Maybe he’s getting all his meds in because of the g-tube and the seizures will be controlled.” Like, as if I could even think that for a little moment because “bwaa ha ha ha!!”, said the neurons.  “Let’s have a lightning storm.”

Oldest Daughter had just walked in to pick up BamBam.  We were talking and I was finishing up feeding Darling Boy.  He fell over, which happens because he loses his balance.  Then, his head started convulsing.  This is new, I thought.  So I cupped my hands under his head and told Oldest Twin to start timing.  It felt like forever, watching his head shake and it looked like he was gasping for breath.  He didn’t turn blue though.  Then it stopped, just like that.  Sudden start, sudden stop.  It was only a minute and a half.

I am grateful that it happened while BamBam’s mom was here.  He wasn’t even aware that anything bad had happened.  The twins have seen these so many times that they know the protocol; start timing when mom asks.  But they don’t really watch them and if Dad is home, they just run upstairs.  I think that ‘s a pretty good strategy for them.

He didn’t fall asleep right after but did sleep in the next day.  He’s been pretty cranky since then.  But that could just  be constipation :). Let’s hope it’s another 6 weeks before we see another!

 Photo credit:

http://wsusna.files.wordpress.com/2012/02/1109valashiya-epilepsy1.jpg

I Got Skillz

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Could this be me?

In my younger days, I remember loving the Cherry Ames book series.  She was this very cool nurse who also solved mysteries.  Sweet, a detective and a nurse!  To this day, a good mystery will hold my attention, but medical stuff doesn’t.   Sitting at a lunch table full of nurses talking about how good it is to feel the vein and finally get the needle in there made me a little sick to my stomach.  So who in a million years would ever think that I would be so proud of my new nursing skills……certainly not me or anyone who knew me in high school or college.

 

But life throws things at you and you deal, right?  When my brother was on hospice care for A.I.D.S. at our house, my mom and I divided up the nursing duties.  She cooked him delicious meals that he would eat when nothing else tempted his appetite.  I was in charge of dispensing meds.  It was pretty easy, I just had to count them out and make sure he  took the right ones at the right time. And then I would hook him up to his port and give him his heavy duty antibiotics for the M.R.S.A. he had contracted post appendectomy surgery.  He was such an easy patient, always so nice, even when he was in pain.  So, I had a little home nursing skill before Darling Boy came to town.

 

And now I can do all these things with a g-tube.  Today I cleaned a clog with some soda because my nurse friends told me that was a cheat that they used in the hospital.  Thanks, ladies!!  And I can give him feeds with the pump or the syringe.  

 

The only thing I was really freaking out about was what would happen if the tube got pulled on.  Darling Boy loves to pull on things: strings on his sweatpants, his shirt or pants, and you guessed it, the tube that now hangs out of his stomach.  Actually, he pulled it enough that he dislodged the bar that is flush to his stomach to the point that the doctor had to fix it.   I learned how to unsnap the doohickey and place it flush against his stomach if it happened again.

 

And it did. ON.THE. RIDE.HOME.FROM.THE. HOSPITAL!  D.B. is like a ninja that way, whatever you don’t want him to pull on or knock over, that he will. He is very quick and very strong.  Just because he doesn’t walk, doesn’t mean he doesn’t move.  And the boy has some skills.  Especially the skill of pulling on things on or near his body.  

 

So, I get home that night and felt too tired and edgy to deal with it.  So was D.B., neither of us really slept after 4 hours of doctors’ appointments ending in an x-ray. The next day,  I attempted to disconnect the doohickey  and slide the tube back into his stomach.  Yeah, in a couple hours it was out again.  That night, as I was tossing and turning ( did I mention my anxiety?)  I figured I would call the hospital and see what they had to say.  Either I would have to go to the e.r. (it was the weekend) or I would go in for a visit on Monday.

 

The g.i. doctor called me back and explained in very specific detail how to feel the tube tug inside his stomach and then inch the doohickey down to his tummy, not to pull the tube as I had been doing.  We agreed that if I wasn’t able to do this, I could get an appointment on Monday.  Now, to be fair, the doctor who showed me how to do this had no time to explain because Darling Boy was thrashing around the table and screaming loudly while he was showing me how to do this wondrous thing.  Well, Lovely Husband came back from errands and I tried to fix the doohickey just as the weekend doctor explained.  I felt the little tug and I slowly moved the white piece back towards his belly. Voila,  everything was back in place.

 

So, if anyone could find a mystery for me to solve,  maybe I could change my name to Cherry Ames.  Ack, no,  I still can’t handle the blood and veins thing.  

 

The Magic of the Interwebz

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photo website:http://www.paqoo.com

I started this blog to help me cope with the stress of dealing with being a caretaker of someone who has a chronic illness: muscular dystrophy.  The diagnosis of muscular dystrophy is only a little over a year old.  Before this, we had explored many different diagnoses. As someone with a rare disease,  Darling Boy has seen 3 different geneticists.  Finally,  D.B. had a muscle biopsy done in February, 2012.  It was sent to the Paul Wellstone Muscular Dystrophy Center at the University of Iowa.  After several months,  the verdict came back that he has an alphadystroglycanopathy.  It took almost a year to coordinate with our neurologist and U. of Iowa to get a skin biopsy done in January of this year.  His cells are being looked at to see exactly which genes are whacked.  Almost 6 months later and we still haven’t heard from the lab.  Apparently, it takes awhile to get this type of testing done. It still may not give us a definite diagnosis but it’s so good to be able to name what he has.  There’s a lot of power in that.  I always think of the fantasy book, The Wizard of EarthSea by Ursula K. LeGuin.  The wizard learns as an apprentice that there is power in knowing the true name of things.  I think there is power in knowing the correct diagnosis.  Even if the prognosis isn’t great, at least you have a name and can connect with people who are going through a similar experience.

So we learned that Darling Boy has an alphadystroglycanopathy; a form of muscular dystrophy that has different permutations.  D.B. formerly had a diagnosis of Ataxic Cerebral Palsy.  The difference between Cerebral Palsy and Muscular Dystrophy is that Cerebral Palsy results from a brain injury that causes physical impairment. There may be changes as the child grows but the brain injury is static.   Muscular Dystrophy is a genetic disease that causes physical regression such as the loss of walking, talking and even the ability to breathe. In Darling Boy’s case, he has never been able to walk because he had balance issues.  But he was able to do everything else: roll over, sit up, creep, crawl and cruise on furniture.  Gradually, he lost his ability to pull to stand and crawl.  He was always a good eater and had no problem with chewing.  Then about 2 years ago, he was diagnosed with dysphagia and now needs to have a chopped and blended diet to keep him from aspirating his food. These changes were indicators that he had more going on than Cerebral Palsy.

Anywhoo, after my friend, stark.raving.mad. mommy shared my post about how I just can’t stand living in Holland,  I got an e-mail from someone who’s kid has the same thing.  It’s amazing and magical how the internet can be a venue of support for those of us who have these kids.  She and her son are the first people I met, albeit virtually, who have the same diagnosis as D.B.  She sent me a link to her blog site and we have corresponded several times since then.  She also told me about this organization called Cure C.M.D.  (Congenital Muscular Dystrophy) that is based on the N.I.H. campus in Bethesda, MD.  They are having a free family conference this Monday and I’m going and staying overnight.  That’s right,  staying overnight, in a hotel with a pool and room service.  My friend who’s coming to keep me company is bringing wine.   I will get to meet other families who are going through a similar experience to mine and listen to people who are researching congenital muscular dystrophy.

I would never have learned anything about this organization if I hadn’t started this blog.  Therefore, I think the interwebz can  be a magical place where strangers can share information and support.  It’s not just for snarky celebrity gossip sites!

ART AND DISABILITY

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This is titled self portrait. Doesn’t it look like he’s dancing?

Since my last post was somewhat of a rant, I thought I would post something that has been so positive for my son and our family.  Darling Boy goes to a school for children with multiple disabilities. All the students are in wheelchairs and have some degree of medical need.  It is both a day school and a residential placement. Students come from several different states to attend the school. It’s been in existence since the 1880’s and is on the cutting edge of how to use assistive technology.   The staff at the school has a dedication to these students that’s incredibly amazing.  They assume that these kids have something to say and do everything in their power to get it out of them.

These students also communicate through different forms of art: music, dance, theater and art.  Last year, Darling Boy got to participate in a play that was a collaboration between his school and a private school for typical kids.   It started 30 years ago when the private school teacher heard her students use the word retarded in a disparaging manner. She wanted her students to understand and be exposed to children with differences and that was the beginning of  working on plays that involved students from both schools.  The students from each school were partners in the play and so a beautiful tradition was born. You can see a webpage from his school that includes video on the play and art exhibition here. Scroll to the bottom of the page to get to the videos.

D.B. also has an art teacher who believes that everyone can do art.   She comes up with different ways that the students can use paint and make sculptures.  Her philosophy is to create art using what the student can do. Anything from putting a brush on a hat that to having them use their feet to paint, she gets them all to create beautiful art.  She says that each of her students are abstract expressionists.

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I have one of Danny’s art pieces hanging in my office: when I show it to students they find it hard to believe that someone who can’t move well did it.  As soon as I got his paintings home this year, I hung them around the house.  It makes me so happy to see his artwork hanging up. It’s something that he made with the help of his art teacher but it’s his expression. Danny uses his feet to paint because he doesn’t have great functional use of his hands.

Darling Boy doesn’t have many ways to communicate and interact with the world.  He is learning more about the world through the art programs at his school.  He has always enjoyed music but his new ability to express himself through painting is amazing.  My son comes from a family of artists; both his great uncle and uncle  went to art school.  My husband is quite handy with a pencil and my daughters each have an artistic flair.  (drawing manga characters is a big thing with the younger ones)  Since Darling Boy has been enrolled in his school, he’s now showing us that he inherited the artsy genes too.

I hope you’ve enjoyed viewing the video and seeing some of his art work.

I Effing Hate Holland

I Effing Hate Holland

tulips and windmills

There was a mother of a special needs child, Emily Perl Kingsley,  who wrote a beautiful story  about how having a child with special needs is not what was expected.  She compares it to being prepared to go to Italy and ending up in Holland. It’s  all about accepting what we are given and seeing the beauty in it.   But, I want it to be duly noted, that I  hate Holland and the Hallmark platitudes that go with this story. I didn’t ask to go here and sometimes I am kicking and screaming through the whole tour.  There are so many wonderful things written about the acceptance and gift of having a child with special needs.  While all of this is true,  there is very little writing about the anger and denial of dealing with having someone who is atypical.   And I’m pretty sure all of us are angry, hurt and bitter at times.

For instance,  I can’t stand when people brag about all their kids can do. I’m not going to tell them  to shut up but sometimes I just want to punch them in the throat.  I am still changing Darling Boy’s diaper and he’s 14. Once I got a letter from our state department of education informing me that Darling Boy tested in the lowest 1% of the lowest 1% in the standardized testing.  Nice, right?    I don’t care that you’re kid is making straight A’s.  DON’T. CARE.  a+ bear

I also hate when people tell me that I’m special and God only gives you what you can handle.  I call bullshit on that.  While I have a strong relationship with God and know that he gives me the strength to handle everything, really, I don’t think he specially picked ME to deal with this.  I’m only doing what’s in my heart and soul as a mother.  I will care for and love Darling Boy forever.  I am no more special than any other mom.  And news flash,  there are plenty of kids with disabilities who are given up for adoption.  Several years ago in Philadelphia, a young girl with cerebral palsy passed away from starvation under her mom’s care.  So let’s cut the myth that special kids are given to special people.

There’s another layer to this anger that I am spewing (and it feels so goood) Darling Boy recently got a diagnosis of muscular dystrophy.   He is slowly losing physical skills which started out when he was about 18 months but  things have gotten worse in the past couple years.  He can’t always sit up and he’s having difficulty swallowing. Think of Stephen Hawking in his wheelchair.  He started off with all his physical skills and now is in a wheelchair and using a computer as his voice.  He has ALS,  a form of muscular dystrophy also known as Lou Gehrig’s disease.  We don’t have a definitive diagnosis yet but it is an alphadystroglycanopathy.  Duchenne’s Muscular Dystrophy is a type of alphadystroglycanopathy.  That is a fatal disease.  We don’t know what this diagnosis means and if his time on earth will be shortened.  And that makes me pissed off.

So, here’s something to know about your friends who have kids with terrible things happening to them:  childhood cancer, mitochondrial disease, mental illness.  Just listen to them.  Let them rant if they need to. Please don’t say,  I don’t know how you do it because we don’t know how we do it either.  Try to give them a break, bring a dinner, babysit, take their other kids out on the town.  Bring your kids over to play and explain to them how my child just has a different way of communicating.  My friend’s daughter has Asperger’s and she can always figure out what Darling Boy is trying to communicate because she can hyperfocus on all his subtle clues.  It’s great when she visits.

And here is something that special ed teachers and doctors need to know.  If we come into a meeting demanding the world and being completely unreasonable, don’t get defensive and think we are crazy.  We are hurting and angry and sometimes we take it out on our team.  Please realize that we go through different phases in accepting the diagnosis.  And sometimes we’re just a hot mess.  Be patient and kind and don’t write us off as the crazy demanding litigious parents.  Help us to learn what our child can do, help us believe in the possible because sometimes that’s the hardest thing to do.    speech therapy

Thank you for listening to my rant.

Citations for Photos:

http://www.123rf.com/photo_19548715_traditional-dutch-windmills-with-red-tulips-close-the-amsterdam-holland.html

 

Oh, The Places I Go!

On this journey I go to doctors’ appointments,

dr office

And there we are given some disappointments

At first we saw developmental pediatricians,

From there we were on the road to diagnosticians.

Three geneticists and several neurologists,

I even  considered going to a phrenologist.phrenology head

For a long time no one could find a diagnosis,

So we continued the visits and then with a boom

The seizures got worse and we were in the  emergency room.

We went so many times I told staff we would be admitted,

They looked at me funny but they eventually submitted.

I go other places with my Darling Boy

T.o school events which he enjoys.

Shopping with his sisters he likes not so much,

especially if it’s a girly store like Justice.

He loves the outdoors if it’s not too cold or too hot,

He likes the Archeology museum a lot.boardwalk

He likes the boardwalk but not the beach,

With me at his side, there’s nothing he can’t reach.

Miralax and Thickener

Miralax and Thickener

Warning: Do Not Read This If You Can’t Handle Talking About Poop

I just made Darling Boy’s dinner: chicken and green beans with some mayonnaise to fatten him up and blend it all together.  Yummy, right?  As I poured his Pediasure,  I thought: better add the Miralax and thickener.   And there it was,  the daily routine of life that I will never get used to.

 

Darling Boy has been losing physical abilities for a while now.  Last year, his swallowing ability put him at risk for choking and aspiration unless his food is chopped or blended and his liquids thickened.  On top of that,  his increasing lack of mobility has brought on the good old constipation that is endemic to kids with physical limitations.. You never think about the fact that walking helps to move our bowels but now you will.

 

So,  every day Darling Boy has to get his Miralax in or nothing will come out. When nothing comes out,  Darling Boy is in a lot of pain and begins the high-pitched screaming that was best described by my friend as something that could be recorded and used as a deterrent on an alarm system.  It could also be legitimately termed torture by the Geneva Convention. His teacher at school calls it whooping and we all know it’s his only way of communicating pain. But still,  it can reverberate through your head and has been known to cause  headaches in those susceptible to them.  I have been told by his GI specialist to give him Miralax every day.  I would do this, then he would poop copious amounts and I would stop.  Then he would get constipated and the whole cycle would start again.

 

His school held a parents’ night recently and I learned more about the constipation cycle then I ever wanted to know.  But I finally got the message:  make sure that poop comes out.  And so, the wonderful benefits of Miralax.  It makes the poop come out and has the added benefit of not having him scream his bloody head off when he’s in pain.  A good time is had by all.

Another part of the routine is thickening his liquids.  I really don’t do this all the time but don’t tell the feeding specialist.  Then when he chokes on his water, I think,  oh I forgot to thicken it and now he’s going to aspirate and get pneumonia.  Another mother fail. That’s the thing about having a kid with medical needs: the unending routine of care that you thought he would outgrow. Sometimes, I don’t put him on his futon when he’s sitting on the floor because he’s sitting up so well and not looking bad and then wham,  he has an ataxic spasm and folds himself over and cuts his chin on the hardwood floor.  Fortunately, I was raised by an Italian Catholic mom and am good at feeling guilty.

 

That’s what this blog is about: the daily routines that you never get used to.  Darling Boy is completely dependent for all his daily needs.  My husband and I like to call him The Prince Who Fell From Heaven And Landed On His Head.  ( I have often called my husband The Prince Who Fell From Heaven; given his Italian heritage and the special upbringing of Italian-American boys of a certain generation.  Hey Gina,  get your brother a sammich,  if you know what I mean.)

I love my son and that can never be said enough.  I hope to be a window on the world of living with someone with multiple disabilities.  It’s a challenge that I fight on a daily basis.  Hopefully, this blog will be a place to make connections and get inspiration.