Back in the groove

Finally, Mr. Mr. is back to school.  Usually the program he attends in the summer is off for two weeks in the beginning and two weeks in the end, but this year the calendar was off skewed so he actually had one week off in the beginning and three weeks off in the end.  Then of course Irene came, and this made a huge mess of his school.  Sparing you the details, lets just say something smelled funny!  So four full weeks of no program and we both were about at our wits end!

Tuesday off he went full of smiles and happy feet!  I can't believe how fast he is growing and that this will be his last year at the school he is in and then we have to make some decisions about his kindergarten schooling! 

I'm so happy that he keeps his teacher from last year who is young and energetic and AMAZING!  It truly takes special people to work with these children!

Progress reports for him is that he is now pushing himself up on his knees and elbows!  He is also drinking from a straw! I'm still battling what to do about him using his Binky, (which is only at night in his bed) and the whole baby food debate.  At what point is it not appropriate? As usual, I will allow him to dictate the transition!

Many thanks to Independent Living!!

Walker loves being outside, and so does his brothers and sister, but previously it was difficult to always get him out.  He has two chairs that have wheels on them, but our back patio is concrete and there are two stone steps that I have to carry him down in order to get him outside with the rest of us. Not easy to do by myself. These steps are also a hazard when it comes to getting him to the bus in the morning and home again in the afternoon. They are also tricky in the winter time when the snow and ice make those steps pretty slick. 

Our social worker (who I think i've mentioned that I LOVE) suggested we build a ramp for him and went about the process to find us grant money to do so.

Thanks to the people at Independent Living.  we were able to get funding to add a deck and a ramp to the back of our house!

Ramp for Walker's chair

Last week in the blistering heat wave in NY, the crew was here and built us one beautiful and fully functional deck! The ramp is perfect to get him to the bus in the morning and the extra space is easy to have the whole family outside and enjoying the weather!

Back deck

Lots of room for everyone!

Back on the horse!

Thanks to a Bionda, a company in the tri-state area, Walker has been given a scholarship for the summer to attend GAIT, which is a therapeutic horse riding center.

Last week was his first day back on the horse and I wasn't sure how it would go.  Last year, it took a lot of hours on the horse before he would actually not scream and be mad.  Even putting the helmet on his head would cause him to start crying. And of course, his first day back was a a humid 100 degrees! (Walker hates the heat!)

As I brought him out of the car and talked to him about seeing Patrick (the gentlest horse ever!) he began to get very excited.  He was kicking his feet and hugging me extra tight and laughing his great belly laugh!  I think he remembered where we were and what we were about to do.  When his therapist came over to get him ready he also seemed to remember her voice.  He had a great ride, laughing and vocalizing the whole time!  He was even pushing up on his arms and legs! My favorite part of the ride is when they take Walker off the back of the horse and have him say thank you to Patrick.  The horse always looks back and gives him a good sniff to acknowledge him!  Its beautiful!

It looks like this will be a great season!!  I am super excited to see how much this improves his trunk strength!

Meet Patrick!

The Boy in the Moon

Awhile back a friend posted something on face book concerning a new book written by a father of a disabled son, The Boy in the Moon, written by Ian Brown.  There are many books and stories out there about the trials and joys families face while dealing with their handicapped children, but this one struck a cord since the boy's name was Walker.  I ordered it from Amazon and when it arrived I put it on a shelf and waited until I was done with school to spend some quality time reading it. I have to admit, though, once it was there starring me in the face, I had some anxiety about reading it.  I wasn't sure which direction the writer was going to take and I also knew that just reading page after page with Walker's name on it would evoke some emotional responses to the text.

As I began reading the book, I was instantly struck by many similarities that the two Walkers shared, but there were also many differences.  Like many parents of children, both disabled and abled, I couldn't help but compare their milestones and the affects.  I felt like I was getting the chance to look into a crystal ball of sorts.  Something that I have not been able to do with my Walker since there is no diagnosis.  As the book developed, there was a camaraderie that I found with the writer.  Not only was this camaraderie formed with the struggles, but also the search to really understand the point of Walker's life.It brought forth questions of our value to life, and what we as a society think is true value.

This spoke volumes to me, I struggle with these thoughts daily.  One on hand, we have a society that gives us the message that disabled children are "angles among us" but on the other hand they are also considered a "burden" and  ultimately are "expensive".  How is a parent who is exhausted, financially drained, emotionally fragile and harboring deep rooted guilt issues suppposed to deduce the real affect?

When the author was contemplating this question he asked his wife (Walker's mother) how she felt:

"I don't know what Walker's value is to the world.  I'm not sure that I agree that his lasting value is to have touched people.  That his whole life has to be this fucking Gandhi thing, making people feel better about themselves.  I don't think his life should only have value because he makes other people feel more contented with their own lives.  I think his life should have value of its own."

Eventually after eleven years of struggle they put Walker into a group home.  He returns to them ever ten days and as he settles into his new community the author sets out to see what alternatives they have for him after they are deceased.

He finds an alternative community for the disabled, and travels to France to learn more about its origins.  There he stays with a home for a few days and learns a different approach to living with the disabled.  In that community everyone is the same, from the guests (which we call clients here) to the staff, they all live together, eat together and are a family.  It is religious based, but the author did not find it contemptuous.(since he labeled himself somewhat of an atheist)

One of the founding fathers of the community expresses:

"We're arrogant enough to believe that sentience is all that counts.  It's not all that counts.  A sequoia is not a sentient being. But they count.  There is nothing more magnificent.  It doesn't require me to think about it to be in awe of it. I don't want to minimize the difficulty of raising a handicapped child.  It says something about the place we have reached as a society that doing so creates a serious handicap in these contexts. But it's just a mistake to think of them as lesser than. There's no lesser than.  There's just different from.  It isn't great minds that matter. It's great spirits too"

I can only hope this is true.  As a parent, I want the best for my child regardless of his or her handicaps.

Catch up

Yeah, I've been a slacker not blogging or keeping anyone up to date with what is going on with Mr. Mr. some weeks it seems that everything is same old, same old, then others feel like a tornado has hit. These last few weeks have been tornadoes all around but in a good way!

We got Mr. Mr. a new gait trainer, thanks to Tyler's Gift,   I had been looking for an alternative to his stander, which he seemed to loath!  At school we discovered that he really liked the pony trainer and could actually move himself around a bit on his own. Of course, now that we have one at home, he hates it!  Its more that he is tired and doesn't really want to work, so we save it for the weekends or holidays when he isn't in school.

 

We also have been doing a lot of bean and macaroni play. He loves it!  I still haven't figured out how to do it in the house without making a huge mess. This is such great stimulation for him, both tactile and fine motor skills. 

Not having a diagnois for Walker we really don't know what is going on in that head of his!  So its my job to make sure that he is being stimulated every which way we can think of. But it is a fine line not to over do it either.   Sometimes he just wants to be put in his bed so he can de-compress.  This bothers some people, but I know this is what he needs.  When he comes out he is happy and smiling again!  Since his bed is in the living room, he is not isolated and can still hear all that is going on in this crazy house!!

Most excitingly is that his glasses came! They are prism glasses and the sole purpose is to reflect light to others parts of his eyes to stimulate his brain.  The actually function of his eyes are fine, but somehow the signal to his brain gets interrupted.  These help stimulate those areas more!  At first he wasn't to sure about them, but now he is wearing them all day and seems to be really checking things outs!

 

Doesn't he look like a little professor? 

Walker's Song ~ by Dylan

November 26, 2007 was a quiet night at my father's house.  We were just ready to go to be.  My father came in the room and turned on the lights "The baby was born!" He told us.  "I just got a message on my phone!" He rushed in the room with his phone, "listen" he said.  He played the message, it went like this "Hey boys, it's aunt Amy, just wanted to tell you the baby has been born, his name is Walker, he is seven pounds and you can visit him tomorrow, Love you guys. Bye"  We were so excited.  We talked about what he would look like, We finally went to sleep.  We arrived at the hospital in the morning.  I got to the second floor.  There we ran to the room. I opened the door to find my mom with the baby in her arms.  I picked him up and looked in his deep blue eyes.

Years passed.  Walker was now two years old.  He still hadn't said a word.  He hadn't sat up or crawled or even walked.  I thought it was weird because I had never heard of a two year old child who couldn't say "mommy" yet.  Mom called it autism.  I learned that it's when a child acted younger than his or hers age. It also happens with adults of all ages.  Sometimes I wonder if he will ever walk.  He must have a tough time.  Sometimes I sing to him. When I sing to him I sing "Your not perfect" by Laurie Berkner.  The song explains that you may not be perfect but people still love you if you are not.  To me, Walker is more than just a child, he's a gift.  I love my baby brother and I always will.  I will always have him in my mind and when I think of him I think of that song.  That's what music means to me.  

** This was an essay contest for music class in school.  Dylan was able to read this over the loud speaker at school.  I often worry how my other children are adjusting to the demands of having a special needs sibling.  Dylan wears his heart on his sleeve and is able to express himself so well.  I find it interesting that he calls Walker's handicap autism even though he is not. I guess this is how a nine year old makes sense of it all.  

Good measures

One more item to add to my to-do list is find ways to modify our home to make life a little easier taking care of Walker.  When we bought out house four years ago, we had grand plans.  We knew the space was small but were convinced by a sharkey mortgage broker that in two years we would be able to refinance and add on.  Well, like the story of many other homeowners in our country, the housing market crumbled and we were left with a tiny two bedroom house, that was not valued at the price we paid for it.  So, after trying to sell it, arguing with the mortgage company here we are back in the too small house, sleeping in the living room with Walker's crib next to us.  

I made the decision to keep us all down stairs so that I didn't have to carry him up and down the stair case several times a day.  Not only would it have been killing my back, but also dangerous in case we slipped.  We have made due with the space we have, I remind myself, that people live in much closer quarters and survive.  The other issues however, are getting him in and out of the house in his chair safely and bathing him in our current bathroom.  

Our front door is not wide enough to get his chair through and the back sliding glass doors open up to a small concrete set of steps.  Currently, we pull him and his chair down back wards, but as he gets heavier this will no longer be an option. 

Our fantastic social worker, (have I mentioned how much i love her?) found us a non profit organziation that offers financial assistance to modify homes for children like Walker. 

Yesterday the consultation crew came and we were able to get some ideas of what is proper building code.  It was valuable information, like door ways should be three feet wide, and a ramp must slope twelve inches for every one inch of elevation.  They also pointed out that the if we install a handicap shower stall we would need to replace the bathroom vanity because we wouldn't have much room to get to the toilet. (pretty important I think) This is why these guys are called in.  They've done it and seen it and know things that we would never even think about. 

It is a slow process, but I am trying to look ahead and figure out what Walker's needs will be in the future, and how we can best accommodate them.  If you or anyone you know has done this before, I would love to hear ideas!

Reflections of motherhood

Siblings of special need children carry a lot of weight in this world.  I worry constantly that all three of my children will feel responsible for the care of their brother, specifically Poo.  As a girl, our society conditions girls to love and take care of people, especially family.  I don't consider this a bad thing, I just want more for my daughter. 

For Christmas Poo received a baby doll, equipped with a bottle and a cry if she is not being fed.  At first I had mixed feelings about such a gender specific gift (although I know the giver had none of those intentions!!) I didn't really encourage her to interact with the doll.  It soon wore out its novelty and batteries.  After being stuffed in the toy shelf for the last two months, Poo found her yesterday.  She has been carrying her around and interacting with the baby quite lovingly.  What I find the most interesting is hearing my own voice come out of her!  While feeding the baby her bottle, Poo told her to "hold it yourself, you can do it!" Later she smelled the dolls butt and exclaimed "pee yewww" (lol) but what I loved most was she hugged her close to her chest and told her "I love you Stinky face".

Gender specific or not, it was nice to see a reflection of my motherhood in my little girl.

Wordless Wednesday... Strong Men!

10pm

It's Ten O'clock PM , do you know where you child is?

This is what happens when daddy lets you take a cat nap at 8:00pm!  He doesn't care that he has school tomorrow!  He doesn't care that mommy will be up in another three hours with his sister. He doesn't care that little boys are supposed to be in bed by now.. He just wants to hang out with me!  Who could resist that smile?

Glasses for Mr. Mr.

Since Walker was about four months old, we noticed that his vision  wasn't quite right. In fact, this is what alerted us to something wasn't developing correctly.  He was unable to track and really look into faces.  At first, I was hoping that he was just blind.  I know that sounds strange, but my gut told me there was more to it, but being blind would be the lesser of two evils.  A person can function quite "normally" in our world being blind.  The other was unknown.  So off we took him to an ophthalmologist. (Do you know the difference? click here.) But since he was so young and uncooperative, it was hard to diagnose him with anything in particular, besides, low vision.  She sent us for an MRI, which showed no major issues, she sent us for another test that put a contact lens and wires to a computer to make sure that there were not issues with the retina. Everything continued to come back normal.  The only diagnosis was strabismus, which to us common folk, is  a wandering eye.  So we were told to patch him and contact the National Blind Institute.

We continued to take her to him, while receiving vision services. My frustration was that since he couldn't tell us what he could or could not see, how can we be sure everything was "normal"?

Around Christmas time, we went to see old family friends, who also have a child with special needs.Through our conversations about our amazing children, I learned that they had recently taken their daughter to a low vision specialist. I had no idea this type of doctor existed! So we went home with a phone number and a lot of questions.

Tuesday we got into see Dr. Siwoff,(click here for his website) The initial exam took about two hours, he preformed the normal tests and concluded that the actually function of his eyes was fine.  The question then becomes where is the information being lost? This is his speciality.

After putting some electric wires to Walker's head, similar to an EEG, he then patched one eye and showed Walker a series of video pictures.  Simultaneously, he recorded the brain activity in coordination to the images.  Then he put on glasses with a prism lens and repeated the tests.  He did this for each eye. Right away it was obvious that Walker was attending more to the video with the glasses on.

The determination is that Walker is not receiving image information from the right side of his head.  The electric impulses showed less stimulation to the brain on that side, but did increase with the use of the glasses. The technology is new and is considered out of the box, but I clearly saw a difference in not only the computer print out, but in Walker's reaction.

Vision has a huge impact on ones development. I feel that anything we can do to help Walker see the world, and place himself in it is worth it! In eight weeks, we will get to try out the new glasses and see if that helps him!  I am very excited!!

Swing time

Mr. Mr. comes with a lot of stuff.  He has special chairs, special bath seats, AFO's for his feet, standers to get him upright, elbow splints, a compression vest, a weighted blanket, curved spoons, textured puzzles and much much more.  Most of the stuff is to assist us with his daily living needs, some is for teaching him certain skills and then others is for sensory stimulation. 

As able people we take certain things for granted.  The sensory stimulation of walking or crawling through our skin, bones and joints that Walker doesn't get. I try to give him multiple experiences every day that mimic what us able people take for granted.

Hence the swing that now hangs in my living room.

 

He loves it!

But of course so do his older brothers and sisters. 

 

Which ended up with this outcome

 

Which now gives her even more reason to hang out in it, since she can't do much of anything else!

So we put up another one!

Now I can push my two babies at the same time!

And everyone is happy!

I want more!!

This morning I had a taste of what its like to have Mr. Mr. communicate his needs!  We were both very excited.  As I was feeding him his oatmeal I realized that he was signing more each time!  This was so AWESOME!  Sure his sign wasn't perfect, but I knew that when I repeated it and then feed him he was so happy.  He had a smile on his face ear to ear.  I can't imagine what it must feel like to finally be able to communicate what you want!  All I know if that I want MORE!!

its not always about you!

I'm not really sure where to begin this post except from here maybe....

ITS NOT ALWAYS ABOUT YOU! This is something that I love to reiterate to people who I think become so self involved that they can't even tie their own shoes, but today, this is to remind me to live by my own words.

A few weeks ago, i blogged about a really rough night that i had had with all of my children, and was then seriously put off that not one person responded to me, either publicly or privately.  My email box was empty, not one phone call. So I was MAD! In fact, down right ANGRY! 

I wanted to post blogs about bubble gum and lolipops and then tell everyone where to put them! But I waited it out, knowing full well that my emotions were flailing around and needed to be tamed.

Yesterday as a good friend of mine and I were conversing about my emotions from that post and she gave me a perspective that I hadn't quite considered.  Maybe it really wasn't about me, maybe the general lack of outward pouring was more about people not knowing what to really say or really do. It really hit me, that in my anger infused reaction, I had become my own self involved person. 

Sometime in life we have to take a step back and not get involved in another person's emotional journey.  We can be good listeners, and/or good readers and that alone is enough.  I'm guilty of it myself, there are often people in my life that I love and care about but cannot dive into their own journey because I just don't have the emotional energy to give them.  I feel bad about it, but in the long run its healthier for me. 

So then what do i want to accomplish from blogging about all this? I guess to apologize to anyone who may or may not read my blogs,to anyone who may or may not have felt a sharp pain in their hind side and most importantly to those poor lollipops. 

Feeding time

As parents one of our many jobs is to promote independence in our children.  We want our children to one day be out in the world, independent and productive members of society.  When you have a child with special needs this takes on new meaning.  With Walker it is easy to forget that he is a three year old.  Its easier most days to do much of his daily care myself. Feeding him, wiping his face, changing him etc. Its hard to not want to coddle such a little love bug.  And trust me, he soaks it up!!   But he is a three year old!  And some days it comes shinning through that he wants and desires to be more independent!   And even though it may take a little more time and effort on my part, it is definitely worth it!

He had a grip on that bowl!!

still needs to work on the fine motor skills of getting it in his mouth!

It can be a little messy too!

Change of plans

Snow days, snow days!!  We have certainly had our share in the last three weeks.  The time home has reminded me is that Mr. Mr. has to be worked with on a consistent basis.  It also showed me that with him being in preschool, I feel very removed from the goals that he works on with his therapists.  Going from early intervention, where the therapists work with you at your home, to the preschool enviornment where the therapists work with him at school is very different for me.  On normal school days, when he gets home, he is so tired that we don't really do much "work" but being home with him on these snow days, has made me realize that i don't really know what is going on with him at school. Last week I scheduled time for today to go in and spend the day with him at school.  Wedensdays are his busiest days and it would have given me a chance to see each of his therapies and talk with them about some equipment I would like to get for him at home.

Mother nature had other plans.

So instead, I think I will try and convert his stander to a supine position (facing upwards) and see if he likes that better.

This isn't exactly Walker's stander but you get the idea.

Wordless Wednesday

Nightmare on county route 1

One of the worst parts about being a single mom, is that technically I'm not one.  But lately it really feels like that!  With my husband's new job, it leaves me and the four kids home alone every night.  We are getting into a routine and that seems to be helpful, but boy, when we are out of whack all hell breaks loose!t

Last night was one of those nights!  I was trying to juggle two screaming babies and pulling apart my older two while simultaneoulsy cooking dinner.  Visions of wine and prescription drugs danced in my head, but I knew that wasn't the answer.  But boy was I pissed!  I video taped the screaming and sent it to my husband's cell phone so that he too could get a feel for how my night was going.  Productive? probably not.

So why was I so pissed at him? Mainly because he wasn't there.  Mostly, because I couldn't leave! The impending snow storm only worsened my doom, thinking I would be stuck in this limbo of hell for the next few days! Dinner ended up being a "fend for yourself night" since I couldn't manage putting together anything of real nutritional value.  The older boys retreated to their bedroom (can't blame them) and I spent the next four hours picking up one, consoling one, then having to do the other.  At 10pm, i finally got the Poo in bed, and had time to concentrate and figure out what Mr. Mr.'s problem was. After feeding him, changing him and reading a few books, he was finally ready to settle down.  It was 11:30pm. I clicked off the lights and got into bed.

When I awoke this morning, the house was quiet and a beautiful white blanket of snow was outside my back doors.  Maybe it was all a dream???

Wordless Wednesday

Special Needs for Dummies

There are tons of books for parents to get them ready for the childbirth experience.  The holy grail of childhood books it "What to Expect, when expecting".  I studied this book front to back with all four of my children.  There was always some useful information that i overlooked or forgot at other times.  They also followed it up with the next few years of books which also line my shelves.  What I need, and can't seem to find is a "What to expect, when you have a special needs child" book.  There is no instruction manual. No real guidance when it comes to handling the quirks and perils of a special needs child.  I've even looked on line for help, to no avail.  How is a parent supposed to feel confident when dealing with their child when no one else is  confident to write a book on it!

At four am, this morning we were once again dealing with a boy who just doesn't want to sleep.  He's not hungry, not in need of a diaper change (we handled all of this issues like a pro) yet wasn't content to hang out in his bed by himself.  If this was any of my other children, I would allow him to cry himself back to sleep in hopes that he would tire himself out, or learn to self sooth.  However, this is not possible because he gets himself stuck in positions that he can't get himself out of, or he is saturated in spit and ends of choking on it. The hardest part is that his crib is right next to our bed, so unless we buy super heavy ear plugs, we are awake as well.  I've asked my pediatrician about this in the past, and he has given me round about answers, with no real direction. 

I'm exhausted and in need of some serious advice.... any takers?