Monday, January 16, 2012

Today I cried...

We recently began the processing of having Shelby re-evaluated. We as a team (us, her teacher, her doctor, and therapists) feel that there may be something a bit 'more' going on with her as of lately.

We can't really put our 'finger' on it. She has always been such a complex child that it has made it really hard to do alot of things when it comes to figuring her out.

The good part about this whole process is she is now 6, and this is a 'magic' age as there are more questions and more tests that we can do and have done to help us figure out the best way to help her. This is where my tears came in.

We had an appointment with her psychologist today and I handed in the mountain of paperwork that you are all familiar with. As the doctor was looking and it she was nodding her head and you could tell she was processing the information her self. She asked some questions that weren't on the forms and are best answered out loud.  The question that struck me the hardest was the question about is she social.

You see Shelby is a very social little girl, she just isn't socially appropriate. She would much rather hang out with adults or much younger children. It's not that she doesn't like children her age, she does... she just has started to realize that they don't like her. Well maybe not 'don't like her' per say, but lets face it, what 6 year old can really put up with half of the things that Shelby does to regulate herself and her body... I'm her mother and there are days that I just want to yell to the heavens "Please for the love of all things holy get yourself under control'... and I'm an adult.

Shelby has slowly gone from wanting to play imagination games with friends at school - like house, shopping, dolls etc, and has moved to doing activities by herself, alone. She has started to actually lose the ability to say some words properly and let's face it... its down right scary. I have always heard parents of autistic children describe the process of 'losing' their child and I gave the typical "I can't imagine what that must be like" response and tried to be there to support my friends and fellow mothers etc, but I am starting to feel that same way myself.

There are days that you look at Shelby and she is off in her own little world and no matter how many times you say her name or what you do to get her attention... she just can't hear you. And it is because of this I cried.

My little girl is one of the most amazing children you could ever be blessed to meet... she at 6 years old would give you the clothes off her back and the food off her plate because she cares that much about people. She always wants to make sure that others are ok and that everything is 'right'... but at the end of the day.. things aren't 'right'... they are so very wrong, and so not what I had planned for my family and especially not what I had planned for my child.

So today I cried... and not that pretty silent cry that some woman have perfected... that nasty messy sobbing, snotty cry that makes you look like complete crap for hours after you have stopped. But let's face it, I felt a little bit better.

Monday, October 3, 2011

All because of a story....

With the new school year starting for my daughter, I knew I wanted to be prepared. I wanted her teacher(s) prepared and I wanted her classmates prepared. So I searched high and low for all the information that I could that was teacher and child friendly on Sensory Processing Disorder. I found a lot of great things, but hands down the best tool that I found was the book "This is Gabriel, Making Sense of School" written by Hartley SteinerThis is Gabriel Making Sense of School

I emailed her teacher to set up a time that I could read the book to her class. I told Shelby that I would be coming and talking about SPD and helping her friends understand it. This kind of set Shelby into panic mode. She instantly was worried about what others would think and how others would react. My husband and I explained to her that no one in her class would know that the book was about her, I would just be reading a story to the class and helping them learn the big words and about their senses...and that while she has SPD no one in her class would know unless she told them.

The morning of the story time came.... Shelby was bouncing off the walls with her anxiety. She had to take a few items with her to school to help herself remain calm, but she went. She greeted me at the door when I came to read the story. The teacher quickly organized the room full of kindergarteners on the circle time mat and I took my seat to read the children the story.

I first asked them how many senses they had? No one really knew, so we started listing them, the kids gave me taste, touch, sight, sound and smell. We started discussing how we used those. And then I brought up proprioception and and vestibular. The kids had no idea what I was talking about so we 'tried' to find these senses on our bodies. We spun in circles and jumped etc and we were able to find out the meaning of these senses... we made sense of them.

We then read the story...

The children were so excited to not only hear the fun story and see the awesome pictures and understand a little bit more about how people can be 'different'.... BUT for the first time EVER I saw my daughter PROUD of her SPD!!!! She loved knowing that "This is Gabriel..." is basically about her too, she loved telling her friends about the whys and how comes of how SPD effects her.. for example she said "That's why I get to stand up when we write our letters" or "that's why my shirt sleeve is wet" etc. SHE WAS PROUD to be HER!!!! It brought so much joy to me to see that for ONCE she wasn't embarressed about being 'different' she was enjoying every second of it...

We taught her classmates the words propreiception and vestibular and 'showed' them what those senses were etc. The kids LOVED it... they were so accepting of ALL OF IT and it literally brought tears not only to my eyes but to the eyes of her teacher and also the aid in the room.... and all it took was a story....

So to the author THANK YOU!!!! Thank you so much for writing this amazing book and for sharing Gabriel's story so that other parents/families/children can help others understand more about their 'quirks' ... but mostly... THANK YOU for giving us this story so that I could FINALLY see my baby girl proud of herself.... THANK YOU from the bottom of my heart... there is NO way that I can EVER repay you.. THANK YOU!!!!

Wednesday, September 7, 2011

Today I failed my child....

Today was supposed to be the first of many meetings to set up and implement Shelby's IEP for the next school year. I went in prepared.... I knew what I wanted and I also knew what to expect after talking to other special needs parents in my community. Let's just say I got exactly what I expected at this meeting..... Absolutely nothing. I got the song and dance about how Shelby will never qualify for services because her "issues" do not effect her education and she will not qualify for an IEP. Blah blah blah.... The meeting ended with them telling me nothing and me getting nothing.

I made several mistakes during my meeting today, the first being I went alone. I knew that was a mistake before I even entered the room. I have heard story after story about what happens when people go alone and I went alone anyways. Second mistake I let them intimidate me. I let all the letters and degrees behind their names get in the way of my daughters right. O don't care how long they've been a child psyc, or a teacher or even a principal. I have been Shelby's mom for 6 years!!! I know her better than any one of them ever will... Unlike any of them I will never give up on her.

It is now my responsibility to gather the information needed to go forward. I requested today that she be evaluated for OT and will be requesting tomorrow that she be evaluate for speech as well... it seems to be a foot in the door so I'll go with it. But it has now fallen on me to do the 'paper chase' to get the school results of evaluations and notes from my doctors. I refused to sign a release of medical records with the school for our doctors/therapists because frankly.... I don't trust them. Why would I. So I will run around town getting paper work that I am willing to share with them... I will do it will a smile on my face because I know in the long run I am doing what's best for my child and the other children in her class as well.

All in all TODAY I failed my baby.... but I won't do it again!!!

Monday, June 20, 2011

Less than Sensational Mommy

Our daughter has been struggling lately.... ALOT.

We have gone through a lot of changes lately...

Graduating from Preschool

Flooding in our town that has affected alot of our family

The kick off program at her 'new' 'big' school.

Storms (rain, thunder etc)

Family changes (displaced family members have been around our home a lot more than usual).

Started our 'first' organized team sport (soccer).

Summer in general-- meaning Mommy isn't the most structured and schedule orientated as she should be.

We have been dealing with alot of meltdowns (they are different than tantrums) because things aren't the way that they 'should' be. We are dealing with a lot of anxiety because things aren't the way they are 'supposed' to be. Schedules aren't working, structure is non-existant in our home as of lately.

My 'fly by the seat of your pants' lifestyle is NOT healthy for my "I need structure and routine" child.... I know this. During the school year it is alot easier because my child is in 'school' for a big portion of my 'crazy' day so  I only have to make sure that I structure later in the day. Let's face it... I suck at structure and routine. Plain and Simple... God really messed up when he blessed me with this amazing child. I mean really... apparently he didn't REALLY think it through. I am bound to screw this child up ....

But because of these changes we are also seeing a 'sleep' change which lets face it... SUCK BIG TIME!!! She needs sleep... I need sleep. and quiet frankly, I'm not sure I can survive another night on the couch with a restless 5 year old because she needs the lights on to sleep so that the storms can't get her.

But THIS I can do... I can do the couch night after night cuddled with a very warm active, restless 5 year old who is scared of her own shadow. I may not be able to make her day go right... but I can make her night go better... and if me not sleeping well lets her sleep... then THAT I can do.

I may be the mom of a sensational child, and of a sensational family... but I will never claim to be a sensational mom... because let's face it... lately I have been less than sensational... ALOT.

Wednesday, May 11, 2011

SPD Blogger Network

When we first began on our journey with Sensory Processing Disorder we went into full research and find out everything mode. I looked for everything and anything that had even a tad to do with Sensory Processing. I looked for organizations and books and website. By far one of the best websites I found was actually a blog. It is called "Hartley's Life with Three Boys". Hartley being the mom of kiddos with "quirks" was willing to share so much information about her family and how they delt with different situations etc.

I read her blog over and over... and through reading her blog I also happened upon the Blogger Network. The blogger network was basically a 'list' of bloggers who also discussed their children's sensory issues and shared their experiences and advice and offered support to others. It is a wonderful resource but it took a lot to check all the different blogs every day.

Well now it's even easier... now you can go to one site and read several posts/day about the amazing world of sensory processing disorder etc. Anyone can contribute to the blog and editors/moderators will set when posts will publish etc but it's awesome!

There are stories about finding babysitters for our special needs kids, how to deal with 'others', etc. There literally is a post about everything.. and if it isn't there... maybe you could write it and help someone else ... 

You should check it out... and in the event that you are a sensational parent and have some stories to share... you should :)

You can find the SPD Blogging Network by following the this link:

I promise... you won't be disappointed

Monday, May 9, 2011

It happened...

For some time I have been dreading the "Loose Tooth" that I was knew was coming as Shelby gets older. Shelby has watched her older sister lose teeth and frankly, it hasn't been pretty. Shelby would cry and scream and be in full out meltdown mode as her sister would work her tooth loose and when it would eventually fall out Shelby would scream because of the blood that almost always follows the newly fallen out tooth.

Last Thursday I was sitting at the computer when an email popped up from the girls' teacher (Shelby and her twin sister are in the same class) with the subject line "tooth". This could not possibly end well... as the panic and dread began to fill my system I clicked on the link that opened the email and this is what it said:


Shelby was eating her banana at lunch and not sure how
But bit down just right and her bottom tooth is very loose!
She had a bit of “freak out” but now she is ok.
She wanted me to call so I said I would email you.


OK...  we can deal with this right? I got this email about 25 minutess before the girls' were dropped off by the bus... so I started getting myself ready. I was thinking of what I was going to say, how I was going to comfort her etc. I had a plan in hand and I was prepared... or so I thought.

I see the bus stop in front of my house and the dread fills my body... it has been such a good day and I just KNEW that this was going to put an end to it all.

I walk to the end of the drive to get the girls and Shelby bounds off the bus and says "Mom, my tooth is loose... let's get it out. Can you pull it out please?"..... huh?

I stand there for a moment in shock... and even look around to make sure there aren't cameras somewhere and this was an episode of "PUNKED" --- does anyone but me remember that show??? You know Ashton Kutcher pre Demi Moore???--- anyways.

We head into the house and I get some tissues and a few q-tips, I was expecting it to bleed. I ask to see the tooth and it is sooooooooooooo loose, it is barely hanging on.

So I ask her if she wants me to wrap her up in her hot dog blanket (its a lightly weighted blanket) and she says "No thank you... I can do this". So we sit on the floor and I ask her to open her mouth. I tell her step by step what I am going to do... "Mommy is going to touch your bottom lip now, is that ok", "Mommy is going to wiggle your tooth, is that ok" etc. I barely wiggle the tooth because I am expecting screams and tears... I get none. So I wiggle it a bit more ... still nothing. I realize now that I am going to have to push fairly hard to get the tooth to pop. So I tell her "I have to push hard ok?" she says as best as she can with my fingers in her mouth "Ok mom"....

So I do it... and POP!!! out comes to tooth... her eyes get wide and her smile gets big... well as big as it can with my fingers in her mouth. I quickly grab the q-tips to push into the space that once held her tooth so stop the blood that I knew would make her gag  (she did gag, but thankfully we did not throw up)... and she was done!! Once the bleeding stopped she had to call Daddy, Grandma, etc to tell them.

And what does Shelby say when all the phone calls are done and we have all calmed down?

"When is that fairy gonna get here with my money????"

Yep... THAT'S my sensational kiddo :)

Thursday, April 28, 2011

Book Review: This is Gabriel Making Sense of School

When I started out on the journey to discover as much as I could about Sensory Processing Disorder and the other conditions my children have I happened up on a blog called "Hartley's Life with 3 Boys". This blog and its author have been a god send to myself and my family.

Hartley shares the good, the bad, and most importantly the honest aspects of Sensory Processing Disorder, Anxiety etc. on her blog... and its all REAL!!! After I had spent days and weeks a couple of minutes looking through the many posts on Hartley's Life with 3 Boys, I noticed that she has also written a book about Sensory Processing Disorder, and it is called "This is Gabriel Making Sense of School: A Book about Sensory Processing Disorder".

 This book QUICKLY went on my  MUST HAVE LIST.... and let me tell you it was certainly worth it! Not only does Gabriel Making Sense of School talk to kids (and some adults) on a level that everyone can understand, it also fully describes why our children do the things they do and why we need to help them and to understand that it is more than a 'choice' for them.
As soon as the book came in the mail, I sat down and read it, and then I read it again and again and again. And it taught me something each and every time I read it. For example, I had know for a long time that we had  5 senses ( taste, smell, sight, hearing, touch), but do you know we actually have 7 which include vestibular and proprioception.  We had talked about Vestibular and Propriocention input etc at OT but I never in my life realized that it was a 'sense'. Who knew.... Hartley did :)

Once I had read this book a million times I then read it to my children (ages 7, 5, 5, and 3) and my 7 year old who has always struggled with understanding her sister looked at me and said "Mommy... I get it!!! I get why Shelby is the way she is"... and I beamed ... "Yes Delainey... that is why Shelby is the way she is"...

It was then that Delainey said something that I've been thinking for a long time myself "Brody has this too huh mom?".... 

So long story short... BUY THIS BOOK!!!! I will be buying more this fall to hand out to my daughter's kindergarten teacher and also another book for my son's preschool teacher. It is HANDSDOWN the best book on the market when it comes to relating SPD to not only children... but adults as well.

Thank you Hartley for helping not only me but my family understand Sensory Processing Disorder a little bit more.!!!

You can purchase this book by visiting THIS LINK!!! Amazon has amazing service and really fast shipping!!