Friday, December 12, 2014

A Special Needs Christmas. Guide for the Muggles and the out of ideas

Over the past few days I have had several people message, text or call me. They want ideas for Abby, for us for other families they know. I am not an expert in everything but we've been through this a few times.

For friends and family. Include us. Us being Special Needs families. Invite us. Make arrangements. Out up your dogs. Ask about special menus. The stress of cooking and cleaning when you are caring 24/7 is a big deal.

Also for friends and family. Do not NOT include the Special Needs family member. This is one I hear a lot . She can't say, she can't play so they are just left out. Shame on your she's still a grandchild, a niece, a sister a nephew, a friend. Imagine you were a little kid or any person for that matter trapped in your own body.Imagine everyone else opening gifts with nothing for you. If you don't know what to get ask beforehand. Just like you would for a typical kid.

It may seem like a hassle to put the dogs up or to set a separate place for them to be changes or calmed. You going out of your way could be the best thing you could do. Kindness, acceptance and understanding means more to us than anything. Offer to help. Give Mom a break. Let her eat her meal. It's the little things.

Gifts
Gift cards always rock. Out them in a musical card.
Best cards for the SN child
Amazon
Walmart
Target
iTunes
Regular gifts. Keep it simple. They like music, videos (ask for specifics. Most SN kids fixate on 1-3 shows.
If you are getting the rest of the kids an outfit, pajamas , dress up clothes. Get our kiddos ones that match. They would love it.
If you are getting dolls or trucks try to keep ours from being noisemakers. Soft dolls are best for girls. Boys Moms can usually tell you it's toy story, something aid no, teenage mutant Ninja turtles. All these products some in our kid appropriate versions.
Wrapping. Gift bags. Presents wrapped in tissue paper. Much easier for our kids to handle.
And lastly....always make sure our kids are included in the group photos.
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For the parents
I would say offer to babysit but that almost never follows through. But you can make up your own GC's for
Afternoon to help with Laundry once a month
Offer to make casseroles and do. Out of the freezer and into the oven is a big help. Sometimes we are out of food...not because we can't afford it but because we haven't made it to the store and or are to bone tired to cook.
Offer a service like Merry Maids or Laundry drop off pick up service. Many places charge 11.00-20.00 a week. Even if just for a month.

Cards for Mom
Amazon
AMC Movies
Starbucks
Hobby Lobby
Massage
Hair services

Cards for Dad
Find out which couple of fast food restaurants he hits up constantly because he forgets the lunch packed for him every day.
Home Depot, Sears, Best Buy, Lowes
iTunes
Or Gosh forbid he is a gamer. I tunes, XBox or google play cards

Regular gifts
Comfort!
Pajamas
Sheets or Blankets
Electric Blankets
Mens bath or razor kits
Soft socks
Slippers
Sound machines
Feet baths
Massagers


Wednesday, December 10, 2014

She called it the Monster

Today we had an early morning IEP for Abby. All IEPs have to be done before school hours as to not interfere   ...I think

We haven't had one since last winter. It was the first one where I ended it without an argument.

One the way there this morning I didn't have my usual, " Don't be an asshole." Talk with myself. I don't have to take deep breaths. I didn't  grip the steering wheel, hands aching by the time I got there. Why? Probably a few reasons. I AM exhausted. I have accepted my child. After probably 10 IEP's. I am more educated and they are more used to me.

This time though...l almost don't have words. It was like there was a team there for the sole reason to come up with an

Individualized
Education
Plan

Like one for my kid and about my kid. Like really what is best for her. Her.

I'm not going to fault any previous staff. People try. People become hardened. I was clueless at first. Then I was angry for the next few. I was fed up for a few. I was not an easy person to deal with. Then I just became tired. So tired. I didn't want to talk about how disabled she is. I didn't want to have group pow wows over it.

Last year was a transition year. The teacher she had for 3 years had retired. I was so defeated. I don't want to start over. I didn't feel like  I had it in me anymore. I had been Ill with Pneumonia. I was in pain all the time from a spinal injury that was yet to be diagnosed. My husband was unemployed...again.

I remember going in for meet the teacher night. I didn't know her. At least I thought I didn't . Turned out she had been at the last IEP.

I went in with Abby's PODD book, a switch, her Tobii and one request. Give her the benefit of the doubt. Look in her eyes and believe in her. She did. From that moment.

At the beginning of the year. The first day actually. I knew this year would be better. A little more hope. Abby's PT from Early Childhood was the new head PT for the district. She believes in her.

She was the one today...for the first time, that said, " She has met her goals. We need to add to it. She more than tripled it. YAAAAHHHHH!!!!

Then she said it. She said it unscripted and without prompting. She said the words us families only know about and say to each other.

She called it the monster.

".... It all depends on how the MONSTER is affecting her that day."

I shocked everyone I think by bursting into tears. She got it. She paid attention. She had been listening and she knew. Not that day. Not today. But all along. Even with 4 years away from Abby. She knew. I almost can't even type my heart is so full.

Someone..not one of us gets that Abby is trapped. That something has her and we can't see it. We can't kick it's ass and it has all the power. The monster that stole her in the night..that's what we call it...dragged kicking and screaming into a world all her own.

And by my reaction to that statement. I poured tears. I couldn't complete a sentence for a few minutes...I'm sure the rest of the team get it now too

There is hope in this world.



Friday, November 21, 2014

I've had this entry going on in my mind for quite some time now and as I start this I have no idea what's going to come flowing out.

I've been thinking about families , like. I do especially around the holidays. My mind kind of goes all over the place.

I look at normal families . You know those ones without IEP's and nurses and and houses full of diapers and meds...land I remember when we were one of those families .

When I was young and growing up in California Aunts and Uncle s and cousins spent holidays together. Weekend picnics in the park. We played cards and had family meals.

When I was grown those same people all went their separate ways and some spent occasional family reunion when someone was sick time together.

In my immediate family things were different. On one side I had my Dad, my Stepmom, my sister and two brothers. We never spent much time with Daddy's family. Holidays were spent with my Stepmoms. On the other side, although I spent as much time and kept in touch as much as possible my relationship with my mother was beyond repair. Although she tried, in her way to fix that over the years I am not a forgiver. I'm just not. You have to beat with me a stick to get me to get over anything. She died almost 2 years ago. I was not welcome at her funeral.

In my mind I'm always right and if I sense you have done me wrong. If you have said or done anything that's not supportive or hurtful you can kiss my ass and I will walk away from you. Most of it is because just like a woman, I expect people to know why I am mad, act like and do what I think they should do.

The other day I sat in bed thinking, (Why does everyone. Everyone eventually walk away from me?)
Is it because I call you on your assholeness? Or is because when I'm done I'm done and it was your fault so good riddance?

I have 2 children. My boy is 22. Nothing wrong with him per say except for a smart mouth and poor choices. physically and Neurologically  he is fine. Ya know for being a boy.

From the moment he was born he was the light of my families life. Spoiled rotten. All sports, plays, programs were attended. There was babysitting. That grandparent and Auntie and uncle type. If the boy was given everything he ever looks sideways at it was replaced as soon as he broke it. Believe me....7 game boys. I could go on forever.
If he had a trip to urgent care or the ER each sibling and parent came running. From concussions to a stitch in the finger and bedside vigils were attended.

Daddy passed when My son was 9. He never got a chance to meet Abby. One of my greatest heartbreaks.
It became obvious after Daddy died that to the rest of the family I was his child, the stepchild, the stepsister....although I was the half sister. Which we never called each other until after he died.

My son was still welcome to go on family trips that were never mentioned to me until too late or too hurt.

Weekend family dinners....the boy was picked up and dropped off. Abby attended just a few before we realized she had a severe dog allergy. Long before Rett Syndrome presented .I begged for a few years to change the place every week so we could still be included. It never happened.

When Abby started to change the family started to pull away. No one really wanted to hold her anymore ...no one went to the many appointments to try to diagnose her.

The day she was diagnosed they had told us 30 days before that she didn't have Rett Syndrome. The initial test had come back negative.
It was mentioned to a family friend when everyone left the family meeting to tell them she in fact had Rett Syndrome and what that meant that,"She's probably glad there is something wrong with that baby. Even more reason for her look at me look at me bullshit."
Wow. I had been told that day to take her home and love her. To make her comfortable because she would die.

As most if not all of your  I am the only sibling that had any children. I was begged to have her. I just has no idea that I was supposed to have a perfect child or it didn't count.

Thursday, October 16, 2014

For just one day.

Yesterday was a miracle day for us. We don't know where it came from or where it went but for yesterday, Rett Syndrome did not kick Abby's ass. For yesterday she stomped all over it. Like a little Princess Ninja. She woke up about half an hour before her alarm. She was happy, ecstatic even. Like she knew her neurons were firing. She wasn't humming. She was jabbering. She would look at me and squeal. Squeal with delight. I didnt really get it in the morning but I loved it. I figured she would fall asleep on the way to school and that would be the end of it. But I kinda wondered through the day. I almost called a few times but I didn't.

 When she got home she was squealing. When I said Hi she said it right back. My non verbal child said Hi. She smiled and laughed and her nurse and I were just in tears. When she did her few minutes of assisted walking and penguin dancing with Dora after her evening tube feed she did without having to balance herself constantly. Without having to constantly move from side to side. 10 minutes turned into an hour. An hour on her feet without falling. When Dora would end and commercials would come on she squealed with delight about different shows...DIFFERENT than Dora. At that point we had to sit down and try to figure out what we had done in the last day or two. Any different ingredients in her food? Did she miss or add a med? Was anything added or subtracted?
Her brother was hanging with us. This is unusual. We were teasing him and he was ribbing and cracking on himself. At a particularly funny quip she hit herself upside the head, laughing and said,"Oh boy!" Two words together? What? I loudly said "Abby." I was shocked and in awe. She looked me dead in my eye, smiled and said,"Abby" while patting her chest. I could have died at the moment. Something was happening. Her brain was working with her body. We were all just beside ourselves. So caught up in the moments we just enjoyed it and didn't try or even think to film it. It came in spurts, exploding out of her, here and there.

 When she went to bed I got her book bag and her notebook out. Her teacher wrote excitedly that Abby was Very vocal all day. Really really social and happy. Spot on with her work with even some hand use. Hand use! I went to bed happier than I've been in ......as long as I can remember. I almost felt some peace in my heart.

 That was yesterday. Rett returned with a vengeance this am. No eye contact, lethargic, hand mouthing. Falling asleep instantly like an infant. Blank. I know I am not the only one that thinks....I wish I could have her back, have her be normal, have her a little better...even just for one day. I guess that was yesterday. I need more. She deserves more. October is Rett Syndrome Awareness Month. this is our reality.

Yesterday, all my troubles seemed so far away
Now it looks as though they're here to stay
Oh, I believe in yesterday








Monday, September 1, 2014

My 91 year old Grandma passed away in December. I knew when I was going to Washington that I would bring part of her with me. She loved the state and worked as a fruit picker and elevator operator near to where we were going to be staying. We took a lock of her hair, mine and Abby's along with a ring she gave me when I was 18 and a gold necklace to a meadow with a view of Mount Rainier. Near the top of Quartz mountain. These are pics from that field and the views from there. All pics were taken that day on that mountain....Love you Grandma! Thank you Irby family for doing this for me. It was a day of high emotions,incredible friendship and love.

The day before this adventure I had called my Aunt and told her the place wanst night. The town she had talked about. I just wasn't feeling it. It was a valley in the middle of a desert. I was very upset. I was hurting because I was only a month out from surgery. My Aunt reminded me that Grandma had worked in that town but always talked about the surrounding area. Clear lakes, Mountains,wildflower fields, waterfalls. She said specifically,"You'll know it when you find it."

I talked to my family there that night and they told me the place had to be Quartz Mountain. We drove as far up that mountain as we could that day before snow blocked the path and I had an extreme panic attack. We went back down maybe a quarter of a mile and went to turn around in a wildflower meadow. I got out and walked around and knew. I had found it. A field of wildflowers, a clear lake, views of Mt Rainier, Mt Adams and the Cascades. We spent a good amount of time there that day and I had the breakdown moment I had needed since she left us.

None of it would have been possible without Jerimarie. She gave me the box we put the items in. She and her daughter helped me pick wildflowers. She dug the hole for me. All for a woman that meant the world to me.

The following are pics from that day.

























AccessDNA

Finally.....A van

Sorry so late with this. Because of a local family, actually 2 local families and their friends and family we finally have a van. A wheelchair accessible van.
 Our local community is awesome. So thankful and humbled by those who are always there for us and the perfect strangers who made it their mission to make this happen.
Our friends threw a party. We got word out on the internet and on radio stations. 6 days later we had a van from an incredibly kind local couple and their family.... and here it is......
 The Jeremy Nichols Band Played and they were great!
 Local support from great friends who get it
 Local awesome people who also get it
Me and my girl taking a break
 This girl never lets me down
 Heather and Peter Caster and family put this all together and they were just wonderful
 A silent auction gift from a very kind stranger
Blizzard Entertainment silent auction gift
 The van! Big red. 1999 Ford E150 Econoline with only 25,000 miles
 A lift!!!!!
 Captain Chairs!
My spot!

I often think in this digital age that it is a shame that we don't send personalized thank you cards anymore. Id like to...I wanted to but there were just so many involved that chose to stay anonymous or were strangers to us.
If you were involved in any way...from working, entertaining,volunteering,sharing,donating....Bikini car washing... We are so grateful/ We do thank you with all of our hearts...and my neck and back!

Friday, August 22, 2014

A Day for Grandma

My 91 year old Grandma passed away in December. I knew when I was going to Washington that I would bring part of her with me. She loved the state and worked as a fruit picker and elevator operator near to where we were going to be staying. We took a lock of her hair, mine and Abby's along with a ring she gave me when I was 18 and a gold necklace to a meadow with a view of Mount Rainier. Near the top of Quartz mountain. These are pics from that field and the views from there. All pics were taken that day on that mountain....Love you Grandma! Thank you Irby family for doing this for me. It was a day of high emotions,incredible friendship and love.

The day before this adventure I had called my Aunt and told her the place wanst night. The town she had talked about. I just wasn't feeling it. It was a valley in the middle of a desert. I was very upset. I was hurting because I was only a month out from surgery. My Aunt reminded me that Grandma had worked in that town but always talked about the surrounding area. Clear lakes, Mountains,wildflower fields, waterfalls. She said specifically,"You'll know it when you find it."

I talked to my family there that night and they told me the place had to be Quartz Mountain. We drove as far up that mountain as we could that day before snow blocked the path and I had an extreme panic attack. We went back down maybe a quarter of a mile and went to turn around in a wildflower meadow. I got out and walked around and knew. I had found it. A field of wildflowers, a clear lake, views of Mt Rainier, Mt Adams and the Cascades. We spent a good amount of time there that day and I had the breakdown moment I had needed since she left us.

None of it would have been possible without Jerimarie. She gave me the box we put the items in. She and her daughter helped me pick wildflowers. She dug the hole for me. All for a woman that meant the world to me.

The following are pics from that day.