Friday, February 20, 2009


The testing has begun. I have filled out a ton of paperwork and answered questions from "what type of discipline do you do in your home" to "did you have any complications with your pregnancy"
I know they need to rule out everything before they can find out what is going on with her but I feel like I am under a microscope. When I have people questioning me about EVERYTHING I begin to question myself. Did I cause this? Is my parenting so bad that I can not teach my child something simple like how to read?
But deep down I know something is not clicking inside her brain. I know that she is one smart cookie too. She just learns differently. She is not lazy, I am not a bad mothers. Both of things (lazy or having a bad mother) is something that would be "the reason" learning disorders existed 50 years ago. N

Nope, we know better now, thank heavens.

It is so hard to get people to understand what she (and I) are going through. Even hubby doesn't fully understand. He asks me why she is so bright when it comes to remembering things that she sees in movies or that I read to her in a book but she can not remember how to read a simple word. I don't have a simple answer. I only KNOW that it is not laziness.

The first round of testing was like a nightmare. It was terrible. We met the teacher/tester in a public library. There was many distractions. With her sensory problems it was a huge problem. She was also VERY uncomfortable. So shy that she didn't even dare say anything for the first 5 minutes. Then she only whispered the rest of the time. She refused to answer questions that I KNEW she knew the answer to.

This first round of testing was to test her accodemic process. There is no way that what happen in the library resulted in an accurate assisemnt of her intelagence.

Friday, September 12, 2008

The hike, homeschool and more

It has been a very hard few days. Just when I think I am figuring her out she ups the ante. Things seem to be get worse.

Bedtime is the worst! And I mean the worst. Dealing with my own PMS and Skyler's SPD is almost more than I can handle. I feel like I am going to lose it. Is mothering supposed to be this hard?

On Tuesday, we met with other homeschoolers in a new nature co-op to go on a hike. The weather was beautiful. The hike was simple but amazing. The company, also amazing. The hike was one mile and by the time we reached the end of the hike Skyler had pretty much had it. There was enough sensations to cause her some panic. Even the sound of someone opening their water bottle caused some grief. We had all sat down at the end/or should I say middle of the hike because we still had to hike back to the car?I'd really wanted to sit and enjoy the outdoors and chat with other homeschoolers. But alas it was not to be. I had to round up the girls and head back. I desperately try to enjoy the hike back but it was hard with Skyler's complaining. I guess all in all it wasn't a disaster, the kids still said they had fun. It just wasn't what I was hoping for and what I needed.

Skyler needs are becoming more important than any of the rest of the families needs. Is that the way it's going to be forever. It doesn't seem fair. Not fair to Sylvia or Sage. Not fair to me or her father. How do I balance Skyler's needs and not ignore the rest of the Family's.

My friend whose daughter also has SPD ( see past post) came over yesterday and brought some shirts for Skyler. Super soft very comfortable :-) she found them at JoAnn fabric store and thought of Skyler. This seem is enclosed. It took a lot to convince Skyler to try them on. She had to scream in her pillow and calm herself before she got up the courage to try them on. She liked them, LOL. She did say that they were a bit to big that still comfortable. I think I will go to Joanne fabric and see if they have more. I will buy them out! :-) now if I could just find pants!

With home school starting to stress is piling up even more. Again, I need to figure out how not to ignore my other children and their needs/education. Sylvia is way behind her grade level. And it is not because she too has a learning disorder. It is because last year I focused more on Skyler and Sylvia got the back seat most of the time. Sylvia is resisting her lessons. I wonder if I'm now pushing her too hard. I do believe in the saying that a says "they will learn when they are ready" I think Sylvia will learn to read and write when she is ready. No learning disorder involved, just a very energetic seven-year-old who seems not mature enough. Skyler on the other hand has the maturity. It feels different with her. I do believe there is some sort of disorder,more than SPD. How do I find out??? How do I get her the help she needs?

Saturday, August 23, 2008

Breaking point plus Skyler's BFF

August 12th
Yesterday and today have been hard in regards to Skyler's SPD. "Off days" as the book "Out Of Sync Child" calls it.

I just started the book, I am still in chapter 1 but there is this sentence that hit the spot "... the child sometimes can take in sensations, organize them and respond appropriately, but not today. This may be one of his off days."

Yesterday Skyler was eating pizza. She felt like something was stuck in her throat. Like when you eat popcorn and a piece pokes the back of your throat. No matter what she did she couldn't get it to curl away. We had to leave to take Sylvia to karate. In the car, just as it was before, she was so focused on the sensation that she could not handle any more.

When we got to XRTainment Zone and Sylvia was in karate I thought that buying her shake would help. It did for a while. But on the way home I lost it with her. After getting after Sylvia and Sage to keep it quiet, and they've listened, Skyler let out a scream. A high-pitched loud frustrated scream! She was that frustrated with her sister's quiet playing.
Her scream hurt my ears and I just lost it! I really try to understand her. I try to create an environment that will work with her SPD. It is so frustrating. I yelled, I swore a lot, and then felt like crap.

Why does she have this? Why why why??? Why did it suddenly get worse? It was not just bad six months ago. Not even near this bad.

I have spoken with my homeschool mom friends in person and through e-mail. There is quite a few that deal with SPP and their even have to get themselves. I printed out or e-mails to read over and over. Their knowledge and their willingness to share that knowledge is a huge blessing to me.

One homeschool blog friend I was talking to in person asked me a question that I had not thought about before. "Did you notice the symptoms getting worse after she had chickenpox?" I had to pause to think that the answer was a huge "Yes" both her and another friend have children that also have SPD. They also had chickenpox over the summer. Both had a relapse of their symptoms at that time. Could it be? She said slowly her son and the other friend's daughter had gotten back to where they were before chickenpox. Skyler has not.

I met a wonderful mom a few months ago. It was one of those meant to be friendships I hope she doesn't mind me babbling about her and her daughters. I met them at a homeschool class. The children were busy in another part of the room The four or five moms were sitting on chairs chatting. Me, a regular at the time, and my now friend, the newbie. It was her second time coming to class. We hit it off and began chatting like two schoolgirls. I remember at one point her daughter came over to our side of the room and said "mom, you were not as quiet as you think you are. ":-)

So why would I feel the need to babble on about my new friend when this is a blog about the Skyler?is why. The eight-year-old daughter of my new friend. Skyler hit it off with her just as fast or faster than I hit it off with her mom. They clicked. It was amazing. Not only did they both enjoyed the same things they also have many of the same problems as SPD for starters.They also have the same struggles with learning to read and write.

Skyler calls S. " My very best friend"

To put icing on this already yummy cake J. Has another daughter M.. That is six. Sylvia and Sage enjoyed being with her.

Together our daughters are 5, 6, 7, 8 and 9 years old.

J. has taught me so much about SPD. I feel like I need to take notes when we are talking so as not to forget anything. I so much look forward to learning all that she has to offer.

Sunday, August 3, 2008

An excuse?

I had bad dreams last night. I was trying to explain to a professional of sorts about Skyler and my suspected SPD. She would not listen and started to yell at me that she thought I was just a bad mother who needed to control her spoiled daughter. :( Now I am awake with another headache.

Last night Skyler used her SPD issue as an excuse. That is all it was too, an excuse. I wonder if that is why I had the dream. She was getting snippy and angry with her sisters. We were all getting into bed and I was getting ready to read Harry Potter. They were not being loud or really doing anything. She just gets onery at bedtime. When I asked her to please leave her sisters alone she said to me "but mom, I am sensitive" Ugh. I do not want her to use her SPD as an excuse when it has nothing to do with the situation. I don't want her to think it is ok to be a jerk to her sisters because her is "sensitive"

I have shared with her a lot of my learning about SPD and even read her tid-bits of the books. Is this a mistake? I always thought that being open with her was best.

I have been at the homeschool expo all weekend nad have had some great talks with friends. I will have a lot to post about after today (today is the last day of the expo) I also got "Sensational Kids" in the mail. Yahoo.

Thursday, July 31, 2008

Just a few of the things Skyler has had to deal with the last week or so.

July 21st
I made Skyler pick out a pair of socks. We were headed to XRtainment Zone where you are required to wear shoes (not sandals). She spend a LONG time trying to pick out a pair that feels right. She not only wears them inside out, she takes scissors to the seams that stick out. She then put on her new shoes. While going out to the car she was complaining of goose bumps on her arms. The sensation of the socks and shoes was giving her goosebumps. When we were all in the car she had a very hard time dealing with the shoe situation AND her sisters chatting. She screamed for her sisters to "BE QUIET" It was like her brain couldn't handle all of it at the same time. She clenched her fists, her shoulders rounded. Every part of her body tensed up with the stress of dealing with it all.

July 26-
We were at Wal-Mart We had worked our way up to the front of the line at the checkout. Skyler was busy thinking about something else and had not noticed that we were right next to the register. The cashier scanned and item and the register let out the typical BEEP. Skyler gasped, grabbed her head and began to cry.
Things like this has been happening more and more. I am now forced to look at reasons why.

July 27th
At dinner time it was her sister's fork scraping on her plate that set her off. She was in pain, real pain.

On July 29th
as we were getting into bed Max the dog tried to 'fluff' his dog bed by scratching and scratching at it. Skyler was on her bed. She screamed tore her paper into a dozen pieces and covered her head with her pillow crying.

July 30th
At Target. We all get in line at the register. The lights, the noise, the hubbub is all too much for her. She tells me kindly that she is starting to get 'that' feeling again. I take her outside to the front of the store leaving hubby at the register with our things. She instantly seems better.

That night the dog scratching on his bed caused another cry of pain. She asked me to stop reading the book (bedtime story has been Harry Potter) She said she needed time to try to get the sound out of her head. Dog had already stopped scratching. After a few moment with her head under her pillow she cuddled next to me and asked me to softly hum in her ear to get the sound to 'go away'

She has told me before. If a sound sets her off it is like her brain tries to hold onto the sound. She also told me last night that it is certain types of sounds that hurt, not all sounds. I have found that it is things like the blender and the vacuum are triggers. And loud bursts of sound that she is not totally prepared for really hurt her. Like turning the power on on the TV receiver and having the volume set up too high. If I have her prepare herself it is not as bad. She will cover her ears. She has this thing that she does where she will plug one ear with one hand and then lean her head to the other side so that her shoulder is blocking the other ear. That way she can still use her one hard. She does this when we are making shakes with the blender.

I ordered two books to help me with this journey of "Understanding Skyler". I can't wait till I get them. One is called "The Out of Sync Child"
The other is Sensational Kids

I also just found out that the Charter School does NOT offer OT for children with SPD. :( They do however test and help with auditory, processing, visual, motor, and attention processing. I know that Skyler's problems are more than SPD but I am not sure what. I have played with the idea of Dyslexia but I am not positive. I do know, in my very limited knowledge of SPD that things like Dyslexia can also come with SPD. It is rare that SPD is the lone/sole problem for a child. Many (might be most) children with Autism have SPD. You will not find anything on SPD without the mention of Autism. But from my understanding SPD is not on the Autism spectrum. I at first thought it was.

My next step is to find out if her medical insurance will provide OT.

This is a scary journey for me. I hope that others will stumble onto this blog and either get help from my words or help me with the journey by their experience.
I truely believe that Skyler has SPD (Sensory Processing Disorder) As well as a learning disorder. I thought that keeping track of my journey to figure out Skyler and how best to help her.
This will be my journey.