Archive for the ‘special needs’ Category

19
May

Special ed

Posted by Sandi in School, special needs

Every three years my five little ones in special ed require a "triennial." What that means is that the team of professionals meet and study my child for weeks and they test them and observe them and send me home questionnaires. The Vineland, the BASC-2, and anything else they can find, that will help them to assess the needs and placement of my kids. 

Last year was that YEAR for the boys.   

This year marks Pickle's third year in school, so hers is going on right now. 

I spent yesterday filling out her questionnaires.  

I spent most of yesterday confused as hell.  

Listen to some of these-

Does she encourage others to do their best.               Never, Sometimes, Often, Almost always.

Does she volunteer to help around the house-

Does she worry about things that cannot be changed-

Is she creative-

Does she threaten to hurt others-

Is she chosen last by other children-

Does she act out of control-

Does she seem out of touch with reality.

That's about when I picked up the phone and called the school psychologist. I had attempted to answer 77 of the 160 questions.  I am convinced that this test/questionnaire is only going to confuse matters for them and her.  

How do I possibly know if Pickle is out of touch with reality.  My reality? YES.  But her reality?  I think she seems very happy in her little world. 

Acts out of Control?  How do I answer that?  Out of control for a normal 6 and half year old?  Probably.  But she is in TOTAL control of herself, her world, AND her mom.  

The only one I felt like I could answer was the "threatens to hurt others" question.  I circled ALMOST ALWAYS in SHARPIE.  That's Pickles favorite way to control us.  She picks up the nearest object and cocks her little arm back and threatens to throw it.  She has a dead on aim.  Brandon got pegged in the head with her shoe a few days ago because he wouldn't let her swim at bedtime.  

As for the rest of the testing…

It all goes on at school. In June I go in and sit in a big circle with all the professionals and Brylee's teacher and they tell me their findings.  I LOVE TRIENNIALS! 

It's fun to see where the kids are at. 

Last year in Dalin's, I was surprised he had scored so low on one of the tests. Dalin is pretty damn smart, and what he doesn't know, he can usually BS his way through. 

I questioned the tester and learned all sorts of good stuff.  She pulled out the test and we went over it so I could see for myself how it was scored.

One of the questions was, which two words go together.

BROOM TRUCK DOG TIRES

Dalin chose Broom and Truck

The tester asked him why he chose those two words.  "Because I see trucks with brooms in the back of them."

He got no points for that answer.

The correct answer is Truck and Tires.

Same kind of question, again four words.

APPLE CURTAINS WINDOW BACKYARD

Dalin chose Window and Backyard.

Why?

"I look out the window and see the backyard."

He got no points for the answer.

While his logic is great, his answers are wrong and his IQ score drops with every question.

Since that test, I see at least four trucks a day with a broom in them.   (People in So Cal don't take care of their own yards.  Every single residence has it's own gardener and every single gardener has a truck with a broom in it.)  I think they should have at least given him half credit.

WAY TO GO DALIN!  Even if his score didn't reflect his brains, I think he is one of the brightest bulbs on my tree!  

Testing these kids can't be easy. Hell, teaching these kids can't be easy.  I know the system isn't perfect.  I know I spend tons of times bitching and moaning about education.  BUT I am so grateful I live in a place where a service is provided for my different learners.  I have been so blessed with AMAZING special education teachers.  I can't teach my regular eddies let alone my special eddies. I am so thankful and blessed that there are people in the teaching profession that specialize in this type of education.  

If you are one of those teachers, give yourself a HUGE HUG FROM ME!  

Hats off to all of you in the business. (school psychologists, occupational therapists, physical therapists, technology specialists,  and speech therapists.)  You have all made my life a little easier by working with my kids.

I'm off to fill out another questionnaire.

Have a great day!

9 Comments »
24
Apr

I’ve walked this path before

Posted by Sandi in Hunter, Parker, special needs

I was driving the five today, minding my own business when I started getting pelted in the back of the head by ritz crackers.  I feel my anxiety spike and I take in two deep breaths before I adjust my rear view mirror.  Our eyes meet and that's all it takes to send him over the edge of reason.  

I could write this same story with a different object being thrown, in a different setting, but the characters are always the same… Parker and I. 

This boy is tough.

This child is difficult.  

He is hard as hell.  

In my opinion we have more on our plate than just a two a year old.  I think we are dealing with some emotional/mental issues.  

It's been thirteen years since Hunter was this age and feel like I am doing him all over again.  I have never cried more for a child than for my Hunter….. until I met my Parker. 

I spend all day everyday trying to prevent the freak out.  Parker runs this house. He runs this family.  He runs me ragged.  I am damned if I do and damned if I don't.  I have done this "two" business so many times.  I know what's typical and what is not.  Parker is not typical.  

I cry just writing it.  I will deal with it.  I will be fine.  The family will be fine.  It's Parker I shed the tears for.  He is in a constant state of outrage.  He wants to control his world and when it's not in order according to him, life becomes unbearable and he makes damn sure we know it.  

His fits include throwing things, hitting things, hitting people, biting, running full speed into walls, furniture and people and sobbing for a VERY LONG TIME!  He has ZERO self-soothing skills.  His coping mechanisms are non-existent.  He needs somebody to hold him and love him and soothe him through the meltdown otherwise it escalates and becomes out of control.   

I know enough about parenting to understand the "rewarding bad behavior" or the "just giving him attention when he flips" and how that could be looked at from the outside.  But if you lived here in this house with me and dealt with this child for any amount of time, you would understand that typical rules and parenting strategies work for typical children, not for Parker.   

Today's melt downs include-

Ellie didn't want oreos she wanted goldfish.  Parker didn't want her to have goldfish. He wanted her to have oreos. 

Parker wanted the yellow bowl not the orange bowl. 

Salsa not ketchup.

Ruffles not tortilla chips.

Ellie couldn't sit in Sailor's carseat. 

He didn't want long pants he wanted short pants. 

Pickle's bus came before Jayden's.

I didn't allow him to go out in the rain.

I wouldn't let him eat my carmex.

He's not allowed to play with poison.

Time for dinner.

no snack, we just ate.

Hunter spoke to him when he didn't want to be spoken to.

We pushed play on the DVD and didn't let it auto start.

There are hundreds of other things, some so ridiculous I can't even remember them.  But these meltdowns all resulted in a FIT!  

A FIT OF A LIFETIME!  

He wears me out.  I find myself tiptoeing around him.  Always on the lookout. I try being proactive in preventing any issue, but it's the tiniest things that sends him through the roof.  

There are times, I am too exhausted to deal with him, and try with all my might to just walk away.  It's those times that someone gets hurt.  It's usually Ellie.  When it was Hunter doing this, Ty was the abused one.  It's just so dang hard…..

I love this kid so much. I can feel his frustration. I can sense his outrage. I know him so well and I just want to take away the issues.  I want him to have a joyful life not a pissed off frustrated one. Because in between all of this outrage is the greatest little guy in the world.  He is fun and happy and hilarious and engaging and full of life and love.  Until something snaps.  

Hunter has had some incredible therapists in his life.  The psychiatrist that works with Hunter now is hands down the most incredible Dr./human being I have ever worked with.  When she first started treating Hunter, she told me I needed to send Brandon with Hunter for a few visits because "Hunter and I share a heart."  What she meant and explained, was that Hunter and I feed off of each other.  If I am up, he is too.  If he is down, I come crashing right along with him and vice versa. Hunter has had me wrapped around his little finger from moment one.  We share a bond that is so intricately knotted together, that I am not sure where I end and he begins.  I tell you all of this only so you understand that Parker and I have become just as wrapped up.  

Empathy is to blame.  I get upset seeing Hunter upset.  He gets upset knowing he has upset me. I feel terrible because I am making him feel badly.  ….and it goes on and on and on.  Besides the empathy, I think I walk that mental illness line really well.  One day, I am sure I have something, the next day, I am sure I am normal.  I think my family feels the same way about me and themselves.  

Anyway,  

Long story short.  Parker is dealing with some shit in his little life.  He is the only baby I have ever had that bawled all the way home from the hospital.  Clearly he didn't like the rental car, or possibly the nurse put him in the left side of the car instead of the right…..

I am going to spend the rest of my life putting his pieces back together so he can and will be as happy as possible.  Because I have walked this path before.

Bless his little heart.  

29 Comments »
02
Apr

My naughty child

Posted by Sandi in Tylon, special needs

Ty punched a kid today at school during snack time. 

We have no idea what happened to provoke this. 

The call from the teacher said, "We will take care of business at school.  You need to take care of business at home."  

So we met him at the door, discussed the incident, and took away his ipod, his backpack, and his wallet, because the loss of these items is the only thing that punishes him.  He was not happy to say the very least.  

I feel awful for the kid that he sucker punched in the nose.  

He made the poor kid bleed.

BUT what I found in his backpack made me feel even worse.

There was a thank you note from another student in his class.

I asked Ty about this thank you note.

He lit up.  He was so excited about it.

 

Mom- "Did you give him a present, is that why he gave you this card?"

Ty- "I did."

Mom- "Where did the present come from?"

Ty- "My wallet."

Mom- "You gave him a gift card from your wallet?"

Ty- "Yep."

Mom- "Ty you are a nice friend."  ( This is 45 minutes after I told him he wasn't a nice friend.)  But inside, I am dying.  Ty's wallet is full of  "plastic, worthless, gift cards."  He gave his friend a gift card that his friend thinks will produce something cool and it has a ZERO balance.  Nothing in Ty's wallet has money on it.

I am not sure which friend I feel more sorry for.  The one that got punched in the nose, or the one that got a present.  

Good Lord….. These are the days that I wonder what on God's green earth I was thinking.  

13 Comments »
27
Jan

pink grapefruit “facial” cleanser

Posted by Sandi in Random, special needs

I feel it necessary to make you all aware of the dangers of using this cleanser as all over body wash….

I haven't been able to sit down for an hour.  

Citrus should NOT be used in anything that could possibly be used between the legs.  

If blogging about my stupidity saves only one of you, it will be worth it.

Shower carefully friends!

25 Comments »
30
Oct

A picture is worth a thousand words

Posted by Sandi in Pickle, special needs

 

And that is why I am so upset that the thirty plus pictures that we took today NEVER happened. My memory card was left out of the camera and we didn’t realize it until the mess was cleaned up.  

SHIT!

Pumpkin carving with Pickle was hysterical.  

As fast as I pulled the pumpkin’s guts out, she put them back in. I mistakingly thought she would stay away from the insides because of the slimy texture, but she didn’t mind it at all.  It became a game I was losing at.  After a few attempts at re-stuffing the pumpkin she decided to sample the stringy shit.  All of us in unison, screamed, "No Pickle!"  Well, she loved that, so she continued to stuff her face with it.  It was disgusting.  When we stopped gasping every time she did it, she grabbed the lid off of Jayden’s jack-o-lantern and took a bite.  …That’s when I decided she should join me for a car ride.  Once she pisses off the kids, she gets so revved up we can hardly contain her.  Eating Jayden’s pumpkin crossed the line!!

I wish so badly we had the pictures we thought we took.  

These are the things I don’t ever want to forget.  

 

 

10 Comments »
04
Jul

Happy Birthday Ty Ty

  

Happy Birthday Tylon Jacob!  

You are fourteen years old today!

I have started this letter/blog post about five times in the last hour and I can’t seem to get past the first sentence.  ( I keep choking up.)  As crazy as you make me about your birthday, and all the activities you want to do, and all the plans, and all the yapping I listen to for months and months, up until it actually happens, it is all worth it when we wake up on July 4th and you are still with us.  

When you were born the doctors said you wouldn’t live to see your first birthday. Oh how we partied on your first birthday, and then the 2nd, and 3rd, and 4th.   We have been partying every single year on your birthday because we know what a miracle it is that you are still with us. We do not take your birthday’s for granted.  We celebrate each 4th of July and the nation celebrates with us.  Parade’s, picnic’s, fireworks, and celebrations all across the USA.  I think God knew exactly when to send you to earth.  He knew that you would want a PARTY!  

The special needs you face are common.  Mental retardation and heart problems are nothing out of the ordinary.  But the chromosonal abnormalities that you have are extraordinary.  Trisomy 9p is so rare that it doesn’t even have a name.  The exact amount of extra material and where it was translocated is unique to you.  The Drs have very little information about your genetic makeup.  We think you are just a nut!  You learn at your own speed and in your own way.  Your big head is right in front of mine this very second trying to read what I write.  You can pick out a few key words and you are making up the rest.  You think I am telling the world that we are going to Target to buy you a new helmet.  I love you Ty, but get out of my way!  

You are both a challenge and joy, much like a typical child.  I wonder often what the hell I was thinking when I brought you home, but I honestly can’t imagine this family without you.  You are like the glue that holds us all together.  You were and are the first piece of this family puzzle.  If you hadn’t been such a joy and so rewarding to raise, I would have NEVER adopted all these kids.  You started it all boy.  I know when I read this to you, you will understand very little, but to the last sentence you will say,  "I didn’t start it, I not."

There are not words to properly express my love and adoration for you.  You wouldn’t understand them even if I had them.  But you do know shopping and food, and that, I can do.  So baby boy, let’s go to Target!  It’s your favorite place on earth, and lets shop till we drop, and then eat till we’re sick.  I will even let you stay up late and watch the fireworks, because it is, after all, your day.  

To borrow your words, "I lucky" to be your mommy.

Happy Birthday Ty.

 

25 Comments »
01
Jul

Counting down

Posted by Sandi in Tylon, special needs

Forgive the interruptions from Brandon and Parker during the video, and ignore Ty’s crooked teeth.  He has been seeing the orthodontist for over a year and we are ALL patiently waiting for a few more teeth to come in so we can put the braces on.  Otherwise enjoy this kids excitement.  IT IS ALL WE TALK ABOUT!   

28 Comments »
26
Jun

Friday Flashback Feb-2008

Posted by Sandi in My kids, special needs

 You all know I am a sucker for people with Special needs.  Ty and Pickle will most likely spend their entire lives with me.  I am NOT(usually) complaining about it at all.   I took these pictures last year with the intent to frame them and hang them. 18 months later, that is still on my list of things to-do.  Blog posting will have to count for something.  At least they are on display.  I hope these pictures make your heart pitter pat, like they do mine.  

19 Comments »
18
Jun

It’s not all fun and games

Most of the time, I would be one that makes light of a kid getting caught with a playboy, or spending a little too much time in the shower. But the issue we are currently dealing with is not one to take lightly or joke about, in my opinion. This kid, is a child, not an adolescent.

It began on September 19, 2007. I remember the date because I sent an email to Bronson asking for his expert advice on being a boy and whether what I found on the computer was “normal” boy behavior or “concerning” boy behavior.

In the email, I stated that I had found porn on a computer. In the history of one of the little kid’s computers “nipplz.com” and “grlzbuts.com” had both been searched. It seemed like something to chuckle about at the time, because the boys were so young and innocent. I was proud of the attempts at words, but not at THE words. This child was clearly sounding things out. At that point in 2007, I was thrilled.

Much to my dismay, the searches did give this child of mine what he was looking for. While only seconds were spent on each sight, it certainly alerted us to the fact that we needed parental controls on the computers. We spent the rest of the day installing safety zones on each of the four Mac’s we had at the time.

Fast forward to present day, now almost two years later. Without giving you the identity of my child, I will say this, he is under twelve years old.

Two months ago, I was changing the sheets on his bed, and I found two of my Victoria Secret catalogs, and a bunch of candy tucked into the side of his bed. I was pissed. He has been stealing my magazines and my treats. I tried to be calm, but all the while I was thinking back to 2007. This child had just busted himself. Since at the time of the computer incident, I had two kids on the exact same reading and spelling level, that both spent equal amounts of time on the computer, I was never sure who had done it. Both children insisted it hadn’t been them and promised and swore they would never type such things. I had my suspicions then, and at the time of the sheet change, eighteen months later, they were confirmed.

I approached said child, with the stash of goodies in my hand, and very calmly talked to him about taking things that don’t belong to him. I didn’t flip out, because this child is explosive and reactive. I had a very calm and very nice talk about being sneaky, stealing, and asking for things before taking them. I didn’t say a word about the content of the magazine, or about why he had them, or what he was doing with them. Because what do I say? I honestly don’t know. This child is a child and shouldn’t even be thinking about things like this.

I am a pro about sex talks with my kids. Sex isn’t a private matter in this house. It isn’t a dirty word. Questions get answered and discussed weekly. But this child hasn’t even had his first maturation clinic at school. I have yet to see armpit hair or any other outward signs of puberty. I would have NO business talking about SEX with a CHILD! Yet, here I am faced with a child that clearly needs to have something said to him.

I am getting ahead of myself here, because I haven’t even told you about the latest and greatest.

On Sunday night, Hunter walked into the room where Brandon and I were sitting and said, “We have a problem.”
He had been in the computer room and glanced up off his computer and saw in the reflection of my glass cupboards what the other child was viewing on his computer.

Hunter said, “I can see you through the reflection, genius. Get off that computer. I am telling mom.” And that’s exactly what he did.

This child was on a computer that the kids don’t use, because we haven’t hooked up their games and approved sites to it. Desi uses it and the big kids when they are home. Clearly this child knew that things could be accessed on the internet. We pulled up the history and had to make Hunter and Hadley leave the room, it was that bad. He had been viewing this stuff in our presence all weekend long. We sit in the same room he does, but because of the way that computer faces, he was never caught.

He clearly has a problem. He is bold and brave and has little, if any, remorse. He has been grounded from the computer for life. But that doesn’t solve the problem here. That just prevents him from accessing it. In my opinion the problem still exists.

This entire thing is so complicated because of the issues this child has and deals with. If it were any other child, I have great ideas of what to do. Nothing we have done or tried, in regards to other behavioral and emotional problems, has worked with this one. I am truly heartbroken that we have added this, of all things, to his already full plate of things to deal with.

I have contacted a few summer camps with therapeutic behavior specialists and counselors for him to look at. I am willing to wash my hands of summer school for him and just find him something constructive to do with his time and his mind. He needs help and I am not sure where to find it.

I could write novels about the emotional and behavior problems we have dealt with in this child. But honestly, it’s him that’s dealing with it, not me. We are just players in his life. He has been dealt a shitty hand and he is going to have a tough life. We want nothing more for him than happiness.

We spend many nights in bed discussing this kid and what the best thing is to do for him. He just doesn’t fit in any mold. He is my biggest conundrum. I love him dearly and I want him to find peace. I just don’t want that peace to be rated XXX.

Signed-
one frustrated mother

PS- If you are a regular reader, you most likely know which child this is, but please don’t name names in the comments for his sake.

33 Comments »
08
Jun

Friendly advice from TY

Posted by Sandi in Tylon, special needs

 

It is not smart to break rules on haircut day.  

 

It’s not smart to tell your mom you hate her in the middle of a haircut.  At least wait until the haircut is finished so you don’t look like a DORK at school on Monday.  

 

Life lesson’s from Ty Ty.

23 Comments »

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