Too Much Sense

We have too much sense in our house.  And I am not talking about common sense, although I like to believe we have a fair amount of that as well.  I am talking about the five seven senses that all seem to be so prevalent (or nonexistent depending on the day or the kid) in our home.  We live in a home chock full of SPD, or Sensory Processing Disorder.

This all started about 5 years ago.  My husband and I walked into our home with a wee little baby who would change our life as we knew it.  That first night home was so hard, and when I really sit back and think about things, was our first time learning to adapt our environment to help B overcome his difficulty processing his senses.

I had decided, during my pregnancy, that I would breastfeed B.  I had learned a few things in preparation of bringing B home about breastfeeding, including the cardinal rule that you could not offer the child a pacifier during those first weeks.  It seemed to be very important, so I didn’t buy any pacifiers, so I would not be tempted.  However, I was gifted a pack and that rule about not introducing the pacifier was thrown out the window the very first night at about 2:00 a.m.

B needed to suck.  He was borderline obsessed with sucking.  In fact, we were finally able to convince him, just a few days shy of his third birthday to get rid of his beloved nuk.  His obsession with sucking didn’t end with just putting a nuk in his mouth though.  It also had to be the right brand of nuk , be not too old and be the correct temperature.  He would carry around three or four of them at a time and swap them out, because he didn’t like when they got too warm.  He never attached himself to a blanket, stuffed animal or any other comfort object, just his nuk was good for him.

Along with learning early on that B needed to suck, we also learned that he needed touch in order to sleep at night.  I don’t know how many times we got him to sleep that first night only to lay him down in his bassinet and have him promptly wake up screaming.  At about 4:00 a.m. we finally laid B down between us and all drifted off to sleep snuggled up in the same bed.  We have now been bed sharing for 5 years.  B is finally in his own bed, but A is also a touchy kid, so now he sleeps right next to me at night.

Speaking of touching, oh the touching…  If I am at home, it is almost certain that some kid is touching me.   B has always been a snuggler.  He needs, several times throughout each day, for E or I to just sit down and hold him tight.  He will tell anyone who will listen how glorious my soft skin is and knows the perfect place in the crook of my neck where his head fits just right and his cheek can cuddle up to my soft skin.  A is a toucher, but not a snuggler.  He wants to have a hand on someone or to be held all. the. time.  Even on the rare occasion that he wants to play on his own, he will come up every couple of minutes to crash into my legs and hang out at my side for a few minutes.

Then there is the crashing.  My boys seem to need a lot of input to stimulate their proprioceptive sense.  It is a rare occasion that someone walks up to me and taps me on the hand to get my attention.  I have to be ready at all times to be barreled into.  Taking care of these kids requires you to be sure footed.  Wrestling, pillow fights, pillow nests, weighted blankets, heavy lifting, pushing, pulling, banging, stomping…  It seems there is never a dull, quiet moment for these two.

Another funny thing, I am learning about SPD is that we can be both under responsive and hyper responsive to the same sense.  For instance, both of the boys will go into meltdown mode if the TV chanel is changed to “snow” and is loud, but not five minutes later they will be talking in a voice only appropriate for the outdoors and crashing toys into each other.  It seemed so odd to me at first that they could be on both ends of the spectrum, but it seems to hold true and I am learning to adapt our environment to account for this.

I am getting better at reading the signs that my boys need more input.  I know now, that when A starts shaking his head back and forth like a crazy person, I need to take him outside to swing so he gets the vestibular input he needs.  When B starts barreling through the house, creating a path of destruction, I know it is time to get outside and pull a wagon full of dirt or push A in his stroller.  When A starts grinding his teeth, I try to find  a way to get him some oral input (although this is difficult, given his aversion to having things in his mouth).   When B starts showing signs of tactile defensiveness, I know I need to just take out the ugly, albeit comfortable,  sweatpants and let him go sockless.

I am finding (without the help of OT yet, the wait lists are ridiculous) that lessening the effects of SPD is so much about paying attention to cues and adapting your environment accordingly.  I am hoping, that once we start some OT, we will be able to test and incorporate even more things into our day that will help make my boys lives a little easier.

My life is forever changed by this, I am hoping I can help my boys to learn to cope and adapt so their lives will be forever changed, for the better, as well.

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B’s Funnies for the Week!

My little man says a lot of off the wall things that typically send us into silly fits of laughter.  I love sharing all these funny little things and I hope to incorporate them weekly (or so) into my blog.  I hope you enjoy…

In response to my husband saying going out to eat sounded stressful:

Daddy, it won’t be stressful, it will be therapeutic.

At church, during a sermon about God warning us about being endangered:

I would believe God if he told me I was in danger, but I don’t trust that guy!

During a drive by we did after hours at his school:

B: well mommy, we will just have to go incotego.

Me: Do you mean incognito?

B: Oh yeah, incognito, we will just have to sneak right in there.

During a conversation about why I married Daddy, even though he has lots of scratchy, annoying hair:

Mommy, maybe someday I can marry a pregnant girl.

His explanation for why we couldn’t take his training wheels off:

Mommy, I could fall down, hit my head, crack my skull and lose all of my knowledge.  We should wait until I am at least five, or maybe even six. (We have since taken the training wheels off and he is doing great!!!)

….and my new very favorite story….

In response to why he was cutting the hair off of his horse on a stick:

I had to cut his hair because I needed a DNA sample to test in my invisible lab.

To Stim or not to Stim

During our recent EI evaluation, A demonstrated several of his stimming behaviors.  He finds great pleasure in repeatedly spinning a lid to a toy drum we have, as well as shaking his head back and forth.  I believe the lid (or plate, or anything round and mostly flat) is a visual stim for him and the head shaking is vestibular.

Living in our family is hard work.  Both my husband and I hold full time jobs out of the home and our boys are by no means the easy going, carefree types.  By the time I get home from work it is a race to make dinner, eat, do the dishes, take baths, get A to bed, give B some alone time, get B to bed, pick up all the messes left behind from the day and then pass out.  All the while, B is hanging on me, wanting my attention and has 57 questions to ask me and A wants to be held and nursed.

It is difficult to get just about anything done.  We are trying so hard to teach A how to play independently, but he just has a really hard time with it.  We might get 30 minutes total of independent play time from him during the entire day.

…back to the EI evaluation.  When the evaluator saw A sitting and spinning his drum lid over and over, she asked me, “do you ever try to redirect or take away the lid when he does this?”  My husband and I looked at each both thinking, well of course we should be doing that!

We don’t usually redirect; we just let him stim away.  Interrupting a stim causes epic meltdowns.  Of course it only makes sense that I should start teaching him other mechanisms to self-soothe and be independent.  I should have been redirecting all along.

It is just so easy not to though.  Once he opens the drawer with all his little plastic plates in it, I know I have a good 5-10 minutes to myself.  I might be able to load the dishwasher or check my email without interruption or hug B without a meltdown from A.  So I don’t stop him.  I let him stim because it means that I get a break too.

I have been thinking a lot about this since Monday.  I have read several articles online and tried to form some opinions on the matter.  On one hand, spinning those plates makes him happy and gives him some independence.  On the other hand it takes him out of our world and into his own.

When does it become a problem? Is my 10 minutes of sanity reason enough to let him go to his own world? If I continue to let it happen, is it going to get more intense over time? Is it really helping him be independent or is it letting him fall away from us?

I with there where a guide book; one firm answer one way or another.  So tell me ASD moms… to stim or not to stim, that is my question.

Five Years

To my biggest boy:

Five years ago, on this very day, you made me a mom.  It was one of the most amazing days of my life.  I still remember the moment the nurse handed you over to me; I had never seen a more beautiful face in my life.  I was in love. I was a mom.

The days we have had together since then have been nothing short of amazing.  You are the most caring, loving, compassionate little boy I have ever known.  You are funny and smart.  You are creative.  You have a love for life unmatched by most.

You have taught me so many things in your short life.  You taught me the true meaning of patience.  You taught me to never judge others, because you just don’t know what their situation is.  You taught me that a love a mother has for her child can create an unstoppable force in the world.

Did I mention you taught me patience?

When I found out I was pregnant with you brother, I mostly daydreamed about the two of you together.  I knew you would be a great brother, but the love you have for him outshines anything I could have ever imagined.  You are the best big brother in the world!

I can’t wait to see what our fifth year together brings.  I can’t wait for the smiles and laughter; the hugs and kisses; the new milestones; the funny things that only you can come up with; the tears; the struggles we face.  We will do it all together and will come out better at the end of the next year; we always do.

Here’s to a great fifth year, my boy.  Happy Birthday. Love, Mommy.

EI

I had my first experience with Early Intervention today.  It was good… I guess.  I thought it would be easier to go through this process the second time around, but it is just as difficult.  My heart hurts hearing that the professionals can see in a short, 90 minute visit where my concerns are coming from.

I hurt.  This hurts.  I am trying to be strong and I know that I am, but this is hard. This is painful.

This morning, the county EI worker (who will be our case manager) and a school district representative came out to our house. They interviewed us and went through the initial paperwork.  They also observed A and tried to get him to engage in some age appropriate behaviors.  He did not play appropriately, but they were, as I knew they would be, impressed with his language skills.

A is not feeling well today so they were also able to see his difficulties with coping mechanisms and also some of the stimming behavior that he engages in (head shaking, spinning lids).  They agreed that he seems to have a lot of sensory processing issues, and has many red flags for autism.

My case manager was very up front and before we began she explained that they would score him, but if we felt strongly about taking the next steps with them, we would. We agreed to that and they will call to set it up in about 2-3 weeks.

He scored a 42 today and the cutoff for doing the next step is a 40. They said that even if we did not push to do the next evaluation they would have encouraged us to, based on the behaviors they did see that decreased his score.

One of our more immediate concerns is with A’s eating.  He is very sensitive to texture of food and does not have a very large palette.  He is consistently below the 10% mark for his weight, even though his is just as consistently above the 85% for his height.  Due to my concern, my case manager is also going to put me in touch with a public health nurse to see if they can help me out with his eating. They said the PHN would have good suggestions for us and could help us to monitor his food intake, weight, etc. more closely.

The nice thing, I am finding, about the birth to three program is that the child does not need to qualify under as broad of an umbrella to get services. I am fairly certain that will not matter in our case, but it is nice to know.

During our next evaluation, we will work with a school psychologist, an OT, an ECSE teacher and the case manager. All of the evaluations and therapies will be done in our home. That is such a relief as we will be able to do it when B is at school and not have to upset his routine or day any by having extra people in our home.

I just didn’t think this would be as tough the second time around. I initiated this process.  I am the one making the observations.  I know what I am seeing.  This should not come as a surprise to me.  Our case manager and school district representative are agreeing with me, not pointing out new revelations.

It still hurts though.  My heart is aching and the tears are flowing.  I know they will both be fine and do great in life.  I know that I am providing them the opportunities they need for success.   I just wish it didn’t have to be so difficult for them to get there.

Today I am letting myself hurt.  I am letting myself cry.  Tomorrow though, tomorrow is another day and I am going to try my best to get up and keep fighting.  Fighting to take as much of the pain and frustration that will come to them from this diagnosis away. Fighting to make their world as easy as it can possibly be.

To Know Love

One of the things that gnaws at my heartstrings whenever reading about Asperger Syndrome, is the social interaction piece.  When I read things such as, “singled out by other children as weird or strange” or “failure to develop peer relationships appropriate to developmental level” or even see a picture of one child left out of a group, my heart aches.

B loves people; he is an extrovert extreme and lives for meeting new friends.  Another child in his class, a neighbor walking by on the street, a same-aged child at the park or a random stranger in the grocery store.  He wants to meet them all, but more importantly, he wants them all to be his friend.  Social anxiety and stranger danger are not phrases found in our vocabulary.

Sadly, I am already seeing his peers looking at him with hesitation when he so eagerly introduces himself.  B’s standard greeting is, “Hi, my name is B.  I am an older four.  Would you like to be my friend?” The general response… to take two steps back toward their parent, look uncomfortably up at me and shy away.  Sometimes, he is lucky to find another boy or girl who jumps right in to friendship with a simple greeting, but most of the time the other child moves away and B is left feeling sad because his attempts at making a friend failed yet again.

During B’s evaluation by the school district the school psychologist assigned to our case went into B’s classroom to observe him.  She noted an interaction that I think is pretty typical of B with a classmate.  During choice time, B went to an area in the classroom where blocks were set up.  B asked his classmate if he could help him build his tower.

The classmate responded, “No, I don’t want you to play by me.  You always knock things down and I don’t want my tower knocked down.”  B responded back to his classmate, “I would never do that to my friend.  I will not knock down your tower, you are my friend.”

I truly believe B meant what he said; he would never do anything to hurt his friend.  Of course, within about two minutes, B misjudged his body in space and sent the tower flying.  He was quick to help the child rebuild the tower, but the other boy no longer wanted him as a play companion.

Some of my biggest fears are that B will not have friends, that he may never marry and that he may never get to experience the joy of having a child.  He is loved abundantly by my husband and I.  His brother adores him.  His grandparents, aunts, uncles and cousins fawn over him.  I am still scared though.

Since the day I found out I was pregnant with B, one of my main dreams was for him to know love.  I want him to know the love of a best friend who can be called on during the middle of the night when he has a problem in his life.  I want him to know the love of a spouse who treasures him, just as he is.  More than anything, I want him to know the love of a child.  That pure, beautiful, fully consuming love that can only happen between a parent and a child.

My biggest hope for B’s life is for him to know love.  Pure, simple love.

First day of Preschool

B had his first day of preschool today.  We got great reports all around!

He got to ride the bus for the first time to school today.  We are very lucky that he is provided free busing by the school district, since he is on an IEP.  He is the last pickup before going to school and today, the bus was about 20 minutes late.  He started getting nervous and I pulled out all my best stuff to avoid a meltdown.

We had success; the bus pulled up to our house and B jumped on like he had done it a million times before! He hopped up into his seat,  let the helper buckle him in and waved goodbye with a big smile on his face.

I got a call on my cell phone a little over an hour into his class time from his room and my heart dropped.  But alas, the SPED teacher (Mrs. A) was just calling to ask a simple question.  She said B was having a great first day and that I should be very proud of him.  ❤

To keep up communication, we have a notebook in B’s back pack that will go back and forth every day to do simple, quick communication, since Mrs. A is not able to check email frequently throughout the day, this works best.  Today she wrote:

B followed the class routine and transitioned just great! He played near a friend with the magnet blocks for a long time during choice time. It was a good first day!

B reported:

It was awesome! The bus was so cool.  It even had seat belts, which is much better than the city bus because seat belts would be much safer in an accident.  I even met a friend today and her name is Isabelle,  like the other Isabelle I know.  I think I like four year old school.

I am proud of my boy!

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