Follow Up

 

 

Welcome to the Jungle

 

I took Eoin to the ENT yesterday for one last opinion, trying to make sure this had nothing to do with sinuses, allergies, or post nasal drip.

 

I was assured by the ENT that all of his airways are clear, his tonsils are not enlarged, and that more than likely we are experiencing a tic disorder.

 

I feel relieved that there is not a 'medical' issue here but at the same time am anxious about how this will play out with Kindergarten.

 

What gives me hope is that he never did the gasp during preschool.  So, I am hopeful of the same for Kindergarten.

 

I have an appointment to meet with the guidance counselor at school next week to make her aware of the situation.

 

At this point I do not believe I will go into it with the teacher.  It has never been a problem in school and until it is I do not feel it necessary to share.  I don't want him treated differently because of something that may or may not happen.

 

I feel that alerting the counselor, will be beneficial in case he does do it and is sent to the health room because they think he can't breathe.

 

As for me and my family, we shall no longer talk about the tic in front of Eoin.

 

All research and literature I have read indicates that ignoring it is most beneficial.  If you want to talk with us about this please do so when Eoin is not in ear shot.

 

He does not seem bothered by it, in fact requested going to see Mr. Hockey playing ENT EVERYDAY, so he could play with the mask with the light on it.

 

We will continue to learn more and help him if and when it is necessary.

 

I am hypersensitive to the sound, so if you see me gritting my teeth that may be why.

 

 

We love you no matter what, Eoin!  There is nothing you could do to change that.

(and BTW, you missed your calling, Amish Farm Boy)

 

 



Simply ask

 

Rock a bye baby...

 

 

Evenings at our house are chaotic at best.  As are most homes with small children.

 

Typically, I bathe and get the two older children ready while Jerry bathes and gets Bridgie ready for bed.

 

For a long time I would read to and get the older two to sleep while Jerry did the same with Bridgie.

 

This summer, however, we have reversed the putting to bed roles.

 

I guess one night I just scooped her up and took her upstairs and from that night on I was hooked.

 

We still rock Bridgie, 3 1/2, to sleep and then place her in her crib.

 

Since she is no longer taking regular naps this usually means she's OUT by 8 pm.

 

The act of rocking a child to sleep is one of the most humbling, mind soothing, body relaxing, and soul lifting experiences.

 

I am usually reduced to tears as I recollect on all of the ways I have wronged my children in that particular day and usually wind up pleading to God to show me the way to do better.

 

It is a much needed release from the tension of the day and I usually spend at least 5 minutes extra after she has fallen asleep, just looking at her sweet nose and chin and smelling her soft, clean hair.

 

I'm not going to claim that I have become a better mother because of this ritual but it definitely has a stress reducing, relaxing effect on me.

 

As school threatens on the horizon, the roles will most likely switch back as Erin and Eoin will need to get to bed earlier and I am okay with that because I know Jerry enjoys and needs that time with her too.

 

So the simple task of rocking a baby can have a profound impact on one's life.  So too can the simple task of asking for help or more specifically asking for prayer.

 

This summer has been particularly trying in terms of managing three kids, their needs, and their boredom.

 

We have a wonderful neighbor who often helps keep the boredom at bay.  But as far as leaving the house for fun trips to the pool, or a state park, like I originally intended for this summer, that has not materialized.

 

This summer has been extremely isolating for the four of us.  When Jerry is with us we are able to 'get out'.  Eoin has had issues with not wanting to go to the pool.  I don't have any idea what triggered this but he does not want to go to our pool.  Other pools, beaches, ponds etc... he is fine with. And man does he love to swim.  So it has been heartbreaking on many levels.

 

The physicality of taking Bridgie, who still resides in the baby/big girl stage, places is daunting.  She still wants and needs to be physically carried and or restrained ( you all do it to your regular kids too, it's not a bad word) when out in public.  Cognitively speaking, I would say she behaves and understands like a 2-2 1/2 year old.  The physicality of carrying a 41 pound toddler with low muscle tone, specifically not holding on, is back breaking.

 

Couple all of this with the stress of Bridgie needing at least two surgeries, teeth and eye, and Eoin's gasping tic, and this mother who likely has her own sensory issues is burnt.

 

I have been aware of the potential of the tic for almost three years and would bring it up to certain people, only to have them stare at me blankly, not able to understand.

 

Yesterday I wrote about it here and posted it on facebook and within an hour had three people contact me because they could relate, two of which have children who currently exhibit similar sounds.

 

What a relief this was to me, for someone to say YES!!! This is a tic and my child does it too.

 

I can't even type that without bawling.

 

Most of my life has been spent keeping my feelings, thoughts, and ideas inside but the weight of motherhood, and all that comes with it, and a diagnosis of Down syndrome has awakened in me a need to share.

 

Sharing my burdens, fears, and worries, spreads the distribution of their weight so that I do not drown in it.

 

As a stay at home mom, who does not really enjoy phone conversations--especially with kids screaming in the background --yours or mine, who does not get out much, and who is extremely introverted, social media, facebook and blogging, have been a God send to me.

 

 

Say what you want about me or other's like me who 'overuse' facebook or who share too much in their blog.  I do not care.  They, facebook and blogging, have saved me.  Mostly, I use these two tools as ways to give myself pep talks, to sort out ALL that is racing in my mind.  To reach out to a universe that largely requires nothing in return.  Say what you will, call it sad, then realize you are not really my friend and hit that convenient button that says 'unfriend' and frankly I probably won't even notice. 

 

 

If other people's posts or 'oversharing' bother you, GET OFF FB, it's likely not for you.  If you think people are BRAGGING by sharing their joys, GET OFF FB.  If other people's pictures, recipes, and crafts make you feel less than GET OFF FB.  If you 'can't stand' one more political post, complaining post, or prayerful post, GET OFF FB.  Facebook is a choice. 

Choose if it works for or against you.

 

 

Facebook and blogging work for me, perhaps in the way soap operas worked for our stay at home mom's.  I use social media to learn from, to cheer me up, to vent, to try desperately to stay in contact with the few friends I have left.  I use it to motivate myself athletically, emotionally, and spiritually. I use it to try to make a difference to other people as has been done for me.  I use it to fundraise for Best Buddies and try to corral others to help.  I use it to motivate me to get to gettin' on that mountain of laundry.  Fold 3 loads, look on fb for 10 minutes.

 

I don't roll my eyes, shake my head or fist, declare stupidity, or feel bad about myself when I use fb or blogger.  I choose to look for the good, the motivating, the amazing in other people.

 

I don't share my thoughts for you on blogger, though if you like to read it great, I share my thoughts looking for clarity in my life and release of stress and loneliness.  I seek someone or something that will teach me, validate me, and or share with me.

 

I will continue my path with social media until my life, with three kids in tow becomes easier for me to manage physically and logistically and I can get out and have face to face relationships with many of you.

 

While my life is not hard, my life is filled with hard things right now.

 

I pray for you social media friends, won't you pray for me?

 

 

 



Part of the pile

Part of the Mound

 

that we are dealing with around here is this.

 

Eoin has been making a gasping noise on and off for about 2 1/2 maybe even 3 years.

 

Well it has come to a head of 24/7

 

Our doctor believes it to be a tic disorder

 

which many children get and that go away on their own.

 

I hope that this may be true but am not sure it is not something else.

 

I feel compelled to push forth to rule out some random medical issue.

 

Upon examination his 02 levels are perfect as well as his lungs.

 

I am sharing this in hopes that someone will go

 

 

Hey, yeah, that is a tic, my son/daughter/cousin's uncle, does that.

 

Despite the annoyingness of it, it worries me a lot, so when he is doing this 24/7 I am worrying and feeling guilty that I am not finding an answer for him.

 

Not the best quality sound but please give a look and listen and let me know what you think.

 

 

 

 

 

 

 

 

 

 

 



Here's your sign....

 

 

STOP

 

 

The color red means the same thing in all languages.

 

Hot and Stop.

 

Even Bridgie gets this as of late.

 

When we pull up to a stop she says "wed".

 

Then signs hot and tries to say STOP  in Bridgidese.

 

So, why is it so hard for people to understand and adhere to the sign stop?

 

 

 

I spend more of my free time looping Crofton Parkway either in my car, on my feet, or on my bike.

 

There are stop signs at every cross street so when I am looping the parkway for the umpteenth time I inevitably see my share of non-stopping offenders.

 

We are quick to point fingers at teenagers or maybe even the older generations.

 

And of course it really can be anybody.

 

I mean we are all guilty of traffic errors and poor judgment.

 

But when you live in a community like Crofton or more specifically around Crofton Parkway you know you are going to encounter pedestrians at any time of day.  So slow down, the speed limit is 25mph for a reason. 

 

STOP  at the stop sign, then proceed with

caution.

 

The places that usually tick me off have been quiet this summer...Eton Way and Harcourt, only for new ones to crop up.

 

There is indeed a STOP sign at the intersection of Pleasant Meadow and Mayfair.  STOP at it.  There are plenty of kids who ride their bikes along Mayfair to get to the pool.

 

SLOW DOWN.

 

On my bike last night, I had to stop for not one but two cars pulling out of Crofton Country Club from the exit closest to Prince of Peace Church.  Cars that park at CCC and take the bus in to work. 

 

This is always a problem area and there is no STOP sign here (which is ridiculous).  So two cars

proceeded to peel out in front of me as if they had the right of way, not even slowing to look for peds on foot on the sidewalk.

 

As I continued my ride, I began to wonder why there is no sign there.  Up ahead, just around the corner from Duke of Kent on the Parkway, I saw our friendly Crofton Cop and he was parked and getting out of the car.  I thought perfect I'll loop around and ask him.  However,  he was standing in the middle of the street waving over two cars that failed to stop at the previous intersection.

 

The moral of the story, I suppose, is biking has opened my eyes to a brand new set of driving blunders and potential catastrophes.  From parked cars, to cars pulling out of driveways, to cars honking for you to get out of the way, to cars trying to pass you when there are two giant moving trucks in the road.

 

So to all those Car Bully's out there, I say here's your sign.

 

 

 

Pictures from google image.

 

 

 

 

 

 

 

 



I'm gonna wash that man right out of my hair.....

 

 

 

Locks of Love

 

In more ways than one.

 

 

Everyone loved these beautiful tresses.

 

 

 

And they required simple maintenance in the beginning.

 

 

But the longer they got the less love and more patience they required.

Until one day everyone was screaming and crying while Mommy 

brushed out the Rapunzel strands.

 

 

It  was decided to trim those glorious locks.

 

 

But in the spirit of all that is this journey with Bridgie, we could not simply trim the tresses.

 

 

We decided to donate all 12 iridescent inches to Locks of Love.

 

We think Lucy approves.

 

 

 

And Bridgie too!

 

 

 

 

 

 

 

 

 



Staring

I used to think Staring was rude...

 

 

Until it started coming from little kids.

 

I had high hopes for this summer at the pool.

 

But navigating the pool with three kids is a high anxiety roller coaster ride for me.

 

Erin is a good swimmer, Eoin is getting better, and Bridgie loses focus quickly.

 

Bridgie's idea of fun at the pool involves about 10 minutes of initial pool time, then quickly running to the snack bar for a "POP!!!", then into the baby pool, back to the big pool, and finally back to the snack bar for a "POP!!!!".

 

She is now even going over to the bag first to get the money and then sprinting to the snack bar.  She runs over grabs onto the counter then looks back at me for the money then waits for me to prompt her "Bridgie, what do you want?"  then she screams "POP!!!!".

 

The pool has freeze pops for 10 cents.  The teenagers manning the snack bar have been great and I usually see them chuckle after she says "tank-oo" and blows a kiss. 

 

With Bridgie's rounds around the pool, it does not make me feel safe having Erin and Eoin in the pool alone, therefore, we still usually wait till Daddy is home and all go together.

 

This summer has also brought about many stares.  Usually, from children but some from adults as well.  For many people, the realization that Bridgie has Down syndrome only set in this spring.  I am guessing because she was usually in a stroller or in the baby pool last year it was not as noticeable.  Now she runs around the pool like she owns the place. 

 

Many, many, children between the ages of 7 and 10 have come right up near her in the big pool and just stared at her.  Trying to figure her or it out.  Usually, there are no words and then they swim away.  The under 7 set are too busy navigating the water and the under 4 set just smile and bounce in the water with her.

 

One afternoon in the baby pool a Mom and her 4 year old were with us and the 4 year old was chattering away with us, wanting to know Bridgie's  name, age, what shows she likes etc... the 4 year old flitted about the pool bringing Bridgie toys and eventually she sat down next to me and she said in a curious tone "Why are her eyes like that?"  I looked at Bridgie and she was sitting in the water with her hands in the 'bubbles', the jet, and she was in her zone where she is kind of staring off into space.   When she does this her tosis is in full effect so her right eye is nearly closed and her left eye is tracking outward. 

 

I did a quick double take and decided to tell the little girl that Bridgie has strabismus and that her eyes track out away from each other, making it hard for her to focus them together.  I then said but she can see just like you and will have a Dr. fix it for her soon.  This appeased the lass and she flitted off and the mom smiled.  She could have meant the shape of her eye but I did not think she would understand Down syndrome and since her mom was there I hoped that she might answer her other questions later.

 

I sincerely hope that her mom would talk with her about Bridgie later but who knows.

 

Another afternoon a little girl about 5 was in the baby pool with Jerry and Bridgie  with no parent to be found.  The little girl was desperate for Jerry's attention and when he did not really give her what she wanted she started 'messing with' Bridgie in order to get the negative attention.  From teasing her, taking her toys, pouring water on her head, and then trying to push her under water.  At this point Jerry picked Bridgie up and they left.

 

Unfortunately for this little girl, there was no parent present to teach her how to interact with smaller children let alone the bigger picture of someone with Down syndrome.

 

You can sometimes tell a parents stance on people with disabilities or differences by the behavior of their children, some come over and love all over her, some ask tons of questions, while others avoid at all costs.

 

It would be my hope that parents we see would talk with their kids about Bridgie or about Down syndrome and encourage their kids to ask questions to them and maybe even to us.  Age appropriate reality answers is what we give.

 

The staring has been tremendous this summer and will continue to grow.  It does not really bother me coming from kids because they are curious and trying to figure out their world, I only hope they have parents who will not shut down their curiosity by telling them only that "Staring is rude."

 

What questions do you have about Bridgie or Down syndrome?  How have you talked with your kids about Bridgie or Down syndrome?

 

I love to talk about both!

 

Discussion will only make their world a better, safer place.

 

 



Shopping Carts

 

 

A Necessary Evil

 

 

 

Your average person probably does not spend much time thinking about Shopping Carts.

 

Unless you are a mom, then you might choose your stores based on whether or not they have shopping carts or the type of carts they offer.

 

And if you are a mom you may have had the thrilling experience of your toddler not wanting to get in the seat.  You know how they go all rigid, start screaming, and won't bend their legs.

 

Chances are you have probably had this experience with car seats or baby swings at the park, too.

 

Or perhaps it's not when you try to put them in but when you try to take them out that they go berserk -- you know yelling, rigid, unable to help you get them out in any way.

 

Well, this is the case for little Miss Boo and I on a regular basis.

 

I am guilty of avoiding the store with her because of the exhausting nature of trying to get her in and out of the darn shopping cart.

 

The only difference here is that she is NOT having a tantrum when I try to put her in or take her out.

 

It's like her body has never done these things before--you know like being picked up and carried, put in and out of a car seat, putting her in a chair, grocery cart, baby swing.

 

Everyday things that kids just kinda you know learn.

 

So yesterday at Target and Old Navy we struggled once again until I decided I needed a system, because the way I am doing it is back breaking.

 

I usually lift her up, with the cart being above a comfortable level for my height, then have to lean over engaging my hamstrings and then try to get her to bend her legs into the holes in the seat.

 

There's the tricky part, at first I thought she was just being defiant or resisting being put in the cart but there is where I am wrong.

 

She either does not have mental memory or muscle memory as to what to do in this situation. At times she is extremely rigid and unbending other times she's all loosey goosey like a wet noodle.  And being picked up into this odd angle, she's yelling at me like "what the heck are you doing to me?'

 

As with everything Bridgie, if you turn it into a song, she gets it.

 

"I lift you to the sky, you stand up really tall, we place your legs into the holes, and now you're really small!!!" 

 

Kind of to the tune of farmer and the dell or is it farmer in the dell.  Whatever, it must be sung with great enthusiasm and a bright cheery face.  And it worked.

 

The step by step for me was way less trying on my back, shoulders, hamstrings, and way less stress inducing.

 

The break down:

 

1. Lift up under the arms, using legs for the lift

(really helps if sibling holds cart still)

2. Lock elbows at sides (kind of like when doing a bicep curl)  lift arms out over the lip of the cart while asking child to stand up tall on the seat.

3. Steady child with one hand while guiding opposite leg into hole. Reverse for other leg.

4. Give a great big hug and kiss and maybe a round of applause.

 

This may seem silly to some, but for me I need a process or else I just get frustrated, annoyed,  and exhausted.  And I don't want that for her.

 

So we shall see if the song with help her 'remember' how to help when getting into and out of the cart.

 

The above break down must be reversed when removing child from cart because lifting out is way worse than lifting in for me anyway.

 

Things to remember with this post.  I am not a physical therapist, doctor, or in any other way an expert.  This is my experience.

 

I want my girl to enjoy going to the store with me like her brother and sister do, but as it stands right now she is not free to roam about the country.  She still runs away, grabs things off of shelves, and does not listen to commands like "this way", "over here" very well.

 

One of my goals for Bridgie this fall is for her to learn to walk with me in public places.  When given freedom she takes it and no amount of vocal commands change her course.  Thus the physicality of taking her out and about without a stroller or cart.

 

While Erin and Eoin are in school you may see us at the library or Target or Wegman's walking around, singing, and learning.

 

Learning through repetition and song how to listen to direction in public.

 

And if you see me out struggling with a cart, chasing her down, or trying to redirect her through song.

 

Please stop and steady the cart, say hello to her (which stops her in her tracks every time), or darn it join in the singing of wheels on the bus and yes hand motions are required!!!!

 

 

Love you Boo and I will always sing for you!!!