Showing posts with label Spaceshipmax. Show all posts
Showing posts with label Spaceshipmax. Show all posts

Thursday, March 2, 2017

Honesty

Writing a blog about our autism journey has been so therapeutic.  Will and I are able to look back and see the progress that Max and Dexter have made in the last 2 years.
This week I have been looking back a lot.

Max and Dexter have made progress but some days, weeks, even months feel like we are drowning and can't catch a breath.  That has been the last two weeks.  Max is regressing in school and at home.  He isn't sleeping, and it is taking a toll on our family.  He tantrums most of the night. From about 5pm until he falls asleep.  And his tantrums are becoming more violent and extreme.  He is also a big 5.5 year old, weighing 53 pounds and 48 inches tall, who can physically hurt you if he is in a rage/manic stage.  We do a lot of therapy methods at home, and try to stay as calm as possible, but some nights I loose my cool.  I yell and cry and get upset with Max.  I then have a pity party and Will tries his hardest to tell me what a great Mom I am.  These nights are hard, and I know it is just a part of our life, but some days I just want some normality.
Why the tantrums?

Will and I have been asked "Are you sure they are autistic?  They seem so calm when you are out. And your pictures show how happy they are."
Another common statement we often hear about Max and Dexter is "They are just acting like children, they are growing up, you must be too soft on them, and you are worrying to much."

I often don't know how to respond to these statements or questions.  Two years ago I would have been on the defense, but now I am confident with both boys diagnosis.  If you spend time with them at different parts of the day, and for more than a few minutes at a time, you will begin to understand what Will and I experience daily.  Max often holds emotions in all day at school, but then at night his brain is overworked and overwhelmed.  This is when he becomes aggressive, angry, and what other people would describe as depressed.  His emotions change minute to minute some nights. He is being taught at school and at home (through therapy) how to show emotions in a positive and constructive way. His processing speed is slower than a typical child so progress is slow.

Real life vs. social media life can be deceiving.  I try to share our real life.  But if I only showed the hard times I would get depressed.  I find comfort in looking back at the happy and positive moments, it also shows the progress we have made as an Autism Proud family.

Both Max and Dexter have such amazing attributes. 
Max is so sensitive and has been since he was born.  He studies the world.  He loves his family, and even takes a picture of us to school with him each day.  He loves Dinosaurs more than anything, to the point where he believes he lives in a dinosaur world.
Dexter is a ball full of energy.  He gives the best hugs and can smile his way out of anything.  He loves letters and has been able to identify the letters of the alphabet since 14 months old.  He is really into video games, and can make his own Mario Maker levels.  He also is a great brother to Max and has helped Max find his physical voice.

Will and I have days filled with fear and doubt, but they are often forgotten when we see the boys accomplish something new, or put a shirt on by themselves for the first time. Those moments make us feel like we are doing something right as their parents.

Monday, September 14, 2015

It take a Village

There are some days I sit and cry.  I cry with frustration, with tiredness, with negative thoughts that I can't be the mom my boys need.  And every single time I have had a moment, or even a full day like this I have had a friend or family member reach out to me and offer to help, or just talk, or even just take a drive around the block.  (Sodalicious has become a major stress relief in my life.) I can't tell you how grateful I am for these moments, and for the village Will and I have formed to help raise our two special boys. 

People often ask "What can we do to help?"  or "Do you and Will need anything?" 
We don't know how to answer this.  Our personalities are not one who ask for help.  We like to serve.  We like to help and be helpful to others.  So asking for help is hard.  But we are learning. 

There are not many people who can watch Max and Dexter.  They are hard boys and I totally understand make people nervous.  Dexter is so anxious to be without Will or myself and will cry for hours.  Max can bolt at a moments notice, and honestly that scares me.  Then Max and Dexter both have sensory issues with food.  So we tend to do everything as a family.  We go everywhere together and travel as a pack.  It is just easier. 

There have been so many people who have helped us.  So many people who have come to our rescue and have made our lives easier.  The emails of support, the texts on hard days, and the middle of the phone calls mean the world to us.  Will and I feel so lucky to have such a huge village.  It is the stranger in the food store who helps me when both of the boys are melting down in the busy parking lot.  Then there are the group of BYU boys who live across the street from us who have on multiple occassions cleaned up our outside toys and have saved Max when he has run into the street.  These acts of kindness make me have so much faith in humanity. 

This past weekend we took part in The Utah Walk for Autism Speaks.  We created a team for Spaceship Max.  We didn't have any expectations for the walk and we really just wanted to go and be a part of the Autism Speaks event.  I was blown away by the support we had.  We had many who supported us by donating to our team and then we had a great group of friends who came and walked with us.  The event was loud, which for an Autism event was strange, but all and all it was a great morning!  Our family is blessed with so much support.

I love my family!  
Super hero dad



Monday, August 10, 2015

Potty Training - a pain in the butt.

I loath potty training. 
I don't hate a lot of things, but potty trianing is high on my list. 
Luckily I have a very patient husband who has been relentless this summer. 

Max doesn't have a "treat" he likes.  He actualy has made a drastic turn for the worse when it comes to food.  He only drinks his meals.  (Another post about food at a later time)

Potty training has been rought for Max.  And for Mom.  It stressed us both out. 
He doesn't really sense he has to go.  He needed a pattern.  I was still working during the year and felt like I wasn't a big help at all.  I felt really guilty about that.  
We started at school. His teachers were amazing and got him on a great potty schedule.  And once he mastered school we really started working on potty training at home.  We tried to have him on a schedule, we tried to use a sticker system, we tried so many things, but nothing worked.  We were all getting frustrated and upset.  So we stopped.  That was in the beginning of June. 

Max then went to summer camp at Giant Steps two days a week.  And there again, he had accident free days. So we knew he could do it at home. 
Max LOVES trucks and toys.  At school if they have a good work session he gets to have his special toys for a lotted amount of time.  We thought, could this system work at home? 

And then magic happened. 
We bought him the toy he has been wanting.  A rescue bot.  (We actually bought him the wrong one...but Poppi is going to be the hero and send us the correct one!)
Everytime Max is successful using the potty #1 or #2 we allow him to play with his Rescue Bot for 10 minutes.  We set a timer and when it goes off, the toy goes away.  I was reluctant.  I know, negative Mommy moments.  But it worked!  And he put the toy away. 
This has worked every single time.  He even tries to force pee out just to play. He also wants the Rescue Bot show on while playing with his toy.


*The real success story:
Today we were gone at a doctor's appointment for Dexter for 4 hours.  When we came home Max came in the house, he ran to the potty, went and then wanted his Rescue Bot.  Miracles do happen. 

Now, he still wears a diaper at night and in the car.  But, progress is progress no matter how small. 
And we couldn't be prouder of our cute little underware wearing boy! 


Saturday, June 27, 2015

Thank you Giant Steps - Year 1.

Words can't describe how blessed Will and I feel to have Giant Steps Preschool in our life.  Max started Giant Steps in November 2014 and has made amazing progress since then.  Early intervention is so important when a child is diagnosed with Autism.  It helps build a foundation for the future and gives the child coping skills they will use for the rest of their lives.  Giant Steps is amazing, and I am so happy Max has another year left in the program.  Giant Steps helped Will and I enter his world, and boy are we glad we did!  It is one amazing world to be a part of. 

What a difference 8 months has made:
-Max can now say over 50 words and makes some two-word statements.  In the beginning of November Max was almost non-verbal. 
-His tantrums have decrease tremendously. 
-He has inflection in his voice. 
-He can say names including his own, some friends, close family, and his teachers. 
-He is 80% potty-trained.
-He will look you in the eye when asked. 
-He loves school!  (Even though some days drop off still is hard and there are tears.)
-He is more confident.
-He is eating a little better.  He still mostly has a liquid diet, but has done a food program at school and will at least lick new foods.  
-He has friends at school and knows their names. 
-He knows how to follow directions with multiple steps.
-Knows when to use "please" and "thank you" and "sorry".

We are working on:
-Dressing himself.
-Potty training at home.
-Not running away. 
-Asking for things using "Can I...?"
-Sleeping. 
-Eating.
-Drinking from a regular cup. 
-Writing letters and cutting with scissors.  (He is left handed like his Grandma Strong!)

This summer Max will be attending the Giant Steps Summer Program two days a week in July.  We are going to try our hardest to keep Max on a schedule.  *Try* is the key word.  

A few of Max's amazing teachers who we love so much:



This is Amber, the Autism Specialist in Max's class.  She is amazing and has helped our whole family. 

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This next year Will and I have been made Co-Chairs of "Friends of Giant Steps" (FOGS), which is a non-profit organization that provides support for the Giant Steps Preschool.  We are both nervous and excited to have the opportunity to serve the program.  We are very proud to be a part of such an amazing organization, and we have blessed with so much love and friendships.  Wish us luck!  And when the Charity Auction comes around in March 2016 I hope to see you there!  We would love your support. 
If you would like to stay up to date on Giant Steps Events make sure to "Like" the FOGS facebook page:  Link here.  



Thursday, June 11, 2015

Anxiety and Therapy Animals

I am an overly anxious person.  I am not afraid to admit that I take medication for my anxiety and have for years.  It helps me sleep and be a happier person overall. 

I never realized how anxiety can effect a child.  Especially when a child can't vocalize what they are feeling.  Max's anxiety has gone up a lot in the last six months.  It is effecting his school performance, and also how he reacts at home.  Autism and anxiety actually go hand in hand, so does ADHD, ADD, and Sensory Processing Disorder.  This is not saying that if you have one you have them all, it is just common that with Autism another side effect could be one of them. 

I love how it is explained in this article from Autism Speaks:
Children with autism express anxiety or nervousness in many of the same ways as typically developing children do. We often see separation anxiety, for example, when children must part with trusted parents or caregivers to go to school or camp. Many children worry and become preoccupied with challenges such as homework, friends or health issues. These issues commonly affect both children with and without autism. However, social anxiety – or a fear of new people and social situations – is especially common among kids with autism.
If your child suffers from anxiety, he may experience strong internal sensations of tension. This can include a racing heart, muscular tensions, sweating and stomachache. Intense anxiety can result in repetitive behaviors that appear to serve no function, such as shredding paper or clothing.
Of course individuals with ASD often have trouble communicating verbally. So outward manifestations of anxiety may be the only clue that something is bothering them. Some researchers also suspect that outward, physical symptoms of anxiety may be especially prominent among those with ASD.

I do a lot of research daily and read as much as I can about Autism.  It is fascinating to me.  I know as a mother and also a teacher it really helps me to be informed and to learn as much as I can so that I can best care for my child.  A few months ago Autism Speaks had a article about how animals help with Autism and Anxiety.  (This is the original article I read via Huffington Post) I talked to Will about the idea of getting a pet for Max.  We have fish, and to be honest, they are boring.  Max hasn't bonded over them.  He has put things in the fish tank a few times to "share" but they don't really do anything for his anxiety.  I started looking into a kitten.  I wanted something that was for Max, that we could help him learn with, that he could help care for, and could be an instant friend.  Therapy animals also help with social skills and making friends. 
I read a lot about therapy animals, specifically cats, talked to other mom's about animals and having a therapy animal in our condo, and felt so good about it.  Will and I talked to Will's parents, and they agreed that it would be okay for us to have a kitten for Max. 

Three weeks ago one of our friends posted on facebook that they just had a new litter of kittens.  It was perfect timing.  And I fell in love with a white and gray kitty they posted a picture of!  Will and I set up a time to come look at the kittens, and the very next day we brought home our kitty home.

Introducing:  The Magnificent Marvelous Mad Madam Mim.  We call her Mim for short. She is named after one of our favorite villains in Sword in the Stone. 

She is so tiny, has the cutest little nose and little kitten meow.  She is very loved.  Max adores her and has since she was introduced to him. 


The first night she was with us she snuggled up to Max and went to sleep next to him. 

When Max gets up in the morning Mim is the first person he looks for, when he gets home from school Mim is the only thing he cares about, and at school his teacher told us all week Mim has been a very popular topic of conversation.  He calls her "My kitty Mim" and I am really excited to see how much she helps our whole family. 
 He has even shared Gerald with her.  That means it is true love. 

Other interesting articles about Therapy animals not only for Autism for specifically for Anxiety:
http://anxietyfreechild.com/animal-assisted-therapy-can-help-kids-with-anxiety-depression/

http://www.anxietysupportnetwork.com/articles/how_pets_are_powerful_anxiety_reducers.php

http://www.nlm.nih.gov/medlineplus/news/fullstory_152699.html