Practice what you preach

I have been a huge advocate for early intervention since Max's autism diagnosis.  Early intervention helps not only the child but gives parents resources, a community, and also a place to learn how to better help their child.  Both Max and Dexter have benefited from early intervention through Giant Steps Autism Pre-School.

"If you have met one child with autism, you have met ONE child with autism."
Each child on the spectrum is different.  What works for one child might not work for the other.  Something that might be really hard for one child might not be a challenge for another.  I believe this to be true with all children not just those on the spectrum.  But when you say "my child is autistic" there seems to be a in the box definition. Believe me when I say, autism is never inside a box.

Dexter is going to be four this July. 

Dexter, 15 months.

Dexter has been attending Giant Steps since September 2016.  We are eight months into the program and we have seen amazing strides in his development.  Dexter is really smart, he is cognitively on track with his typically developing peers.  Sometimes I put the other challenges he has aside because he is so smart and so clever.  This week I had a huge wake up call and Will and I had to make some big decisions about Dexter, something that I was not expecting.

The plan for next school year was to have Dexter at Walden.  Walden is where both Will and I teach.  Walden has a preschool and he would thrive academically but there was this nagging feeling that other aspects of his development would regress.  I wanted so bad for him to be at a typical school, and selfishly I wanted him to just "be normal."  Having Dexter at Walden would help our family schedule, our family finances, and would just be easier (day-to-day).

Yesterday I met with Dexter's teacher, his speech therapist, and his OT/PT specialist to go over his progress and some testing results.  And while his cognitive development is great, he struggles in other areas (you know the areas I was ignoring).  I realized that Dexter needs Giant Steps.  He needs the physical therapy, the behavioral therapy, and the occupational therapy that he wouldn't get at Walden.  He needs an autism specialist, and frankly so do I.  Dexter is so different than Max and I need to be educated on how to best help Dexter on his own journey.  The strides he has made this year are astounding, why wouldn't I want him to have another year of early intervention to keep the momentum going?  I was being selfish.  Dexter deserves the same support Max had for two years at Giant Steps.

The future is unknown.  Will Dexter go to Walden, who knows?  Will Dexter go to Spectrum with Max, who knows?  What do I know about his future?  Not much, except that his mom promises to do a better job looking at his whole person.

*A huge thank you to Tiffany (Dexter's teacher) who has been so supportive and loving to Dexter this whole year.  She has been the perfect person for Dexter to learn and grow from.  We love you Tiff.

----------And for the record----------
"My colleague, who is not a parent, and lately has no filter, reminded me that the needs of my children are more of a priority than my convenience. For four hours a day, it is not worth the progress he could be making,' she said in a matter of seven seconds after being questioned. 'Our school isn't equipped to handle autistic children in a way that Giant Steps can. Besides you waited forever to get into that school. It's a no-brainer."'

Thank you Jamie for talking to me and also for being an upfront good human. 
I needed to hear this.

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.

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

Every Child is Different

Every single child is different. 
They learn different. 
They each have unique qualities that make their individual personalities. 
They react to situations differently.
And over the past four years of being a mom I have learned that both of my children are as different as they come. 
But one thing is for certain they both crave love.  They want to be understood and loved.  And it is my hope that Will and I are doing that for both of them. 

When Dexter was born two years ago both Will and I knew Max and Dexter would have a close bond.  Will witnessed one of the cutest events when Dexter was just a day old.  Dexter had some breathing issues at birth and was in the nursery receiving oxygen.  When Max came to the hospital to meet Dexter, Will went to the nursery to get him.  Will leaned into Dexter's bassinet and said "Time to go meet your brother."  And Dexter smiled big and proud.  He knew how much he already loved him.  Max at the time wasn't expressing many emotions but as soon as Dexter was brought in the room Max put all his cars straight into his bassinet.  Brotherly love is deep with these two!

Dexter has had sleeping issues since birth.  And we have seen so many specialist and had so much advice given to us about sleep.  I have followed my mommy gut on a lot of decisions.  We as a family do not believe in the cry it out method.  Plus Dexter was physically hurting himself at night if he was left to scream and cry.  He would go into full panic mode, and has had many bruises to prove it.  He has never slept through the night and wakes up anywhere between 3-8 times.   
Dexter still nurses and that really has been a blessing.  It is the only thing that calms him.  And on really bad nights even nursing won't settle him down. 

Dexter also has sensitivity to noise.  Especially deep noises, or loud pitches.  This past weekend we were in Salt Lake with my Dad and we ate at Kneeders.  Every once in a while a high pitch beep would be heard from the kitchen.  Dexter would whimper and cover his ears. 

Dexter is very smart.  I know, I know I am his mom but I have never met another 2 year old that knows the alphabet upper and lower case, his numbers 1-20 (can say them and recognize them) and has now started to realize that letters form words.  He has known his letters since about 18 months or even earlier.  It has become a huge obsession just like Max's obsession with trains and wheels. 

About nine months ago we started noticing some concerning signs with Dexter.  Some were the same that we saw with Max and some were very different.  We talked to Max's teacher and also to our pediatrician and determinded that we needed to get him evaluated for Autism and Anxiety disorder.  The process has changed in the past 18 months because of insurance companies taking a more active roll in Autism treatments, which is a good thing, but makes the process long.

This past Monday we went to our final meeting with our case worker and psychiatrist.  And it was determined from all the testing we have done over the past few months that Dexter has a speech delay, Sensory Processing Disorder (SPD), anxiety disorder, and has Autism Spectrum Disorder. This was not a shock to Will or I, but it is still a diagnosis you don't wish upon your child.  We are prepared for the life that this means for our family with two special needs children. We have already started fighting for Dexter just like we do for Max.

 

We are very grateful for our family and friends who love, support, and listen to us on the hard days.  Thank you.  It truly takes a village.