Give me the tools

When I was in Junior High my Dad built a large wood soccer kick board in our back yard.  I grew up in rural New Jersey and we had a good amount of yard space to practice any sport we were playing.  This wood back board became a tool to help me develop the skills I needed in the various sports I played.  I vividly remember throwing and catching lacrosse balls using the back board.  I remember playing one-on-one matches with my dad using the back-board as my goal.  It was a resource which I used to help me improve.  It also was a way to bond my Dad and I.  We spent hours outside together.  We would talk about sports, school, my dad would give me advice, and I would tell him goals I had for the future.  The simple tool of a back board was a special connection with my dad. 

My back yard in New Jersey.

When Max was born I was so nervous to be a mom.  I loved him with all my heart and soul, but I didn't know what I was doing.  Parenting was something new, and it was something I didn't go to school for.  I read books on parenting, on sleeping, on nursing and having a happy well adjusted baby.  But when Max started not hitting basic milestones, was socially behind his peers, and I was unable to connect with him I didn't feel like a good parent.  I failed.  I was failing my child.  I wasn't doing something right.  Max would spend hours screaming all day, would physically hurt himself, and was unable to communicate.  As much as I wanted to understand, I didn't.  I was frustrated, depressed, and worried that I was not a good mom. 

Then a miracle happened.  We talked to our pediatrician and explain the things we have been observing with Max.  He comforted us and told us there is help.  He also told us that we were not bad parents, but instead we are parents of a special child who is going to need our help to navigate through life.  At age 2.5 Max was diagnosed with Autism.  This was a year and a half ago. And since then I have been gathering tools that allow me to enter his world.  The diagnosis WAS NOT the end of the world, it was the beginning of a brand new one.  It was a world that I am so lucky to be a part of.  Autism has helped me reach both my children.  It has helped me be a better mother, wife and teacher.  

Max has been the best guide in the world.  He is a fantastic example of unconditional love, kindness, stubbornness, and devotion to his love for life.  He struggles, we all do.  But at least now he has parents who have tools to help him be successful!  Having two children with Autism gives us even more tools because what we have learned works with Max might not work with Dexter.  We have to be constantly learning. 

Autism isn't a label for my family, it is a tool, a guide, and a world that connects me to my boys. 

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.  

Conquering fears

Last summer when my Dad came to visit we went to Park City and decided to give the Alpine Coaster a try.  We thought Max would love it because it is a car/train that you get to ride in.  Little did we know that after waiting in a line for 90 minutes Max would panic once it was his turn for a ride.  You can read about that experience here. 

This past weekend was a whole different story.  My dad came to visit and we again went to Park City to see if Max would try the Alpine slide and then the Alpine Coaster.  We had no expectations, we just knew once he got on he would love the whole experience.  His brother Dexter is a dare devil and we knew he would want to ride everything also. 

We went on a weekday and during school hours so the park wasn't crowded.  We did the Alpine Slide first.  We road the ski lifts up to the top of the mountain.  Max did GREAT on the ski lift.  He was excited and kept saying "so high" and "look train!"

The Alpine Slide was a huge hit.  I think I was more nervous than Max was.  He sang "Mickey Mouse Road Rally" the whole way down at the top of his lungs.  Will and I were singing along and cracking up. Max was so happy and had no care in the world.  It was awesome!

When we got to the bottom Max immediately wanted to "do it again!" This time we bought tickets for the Alpine Coaster.  This was the same ride that last year he was scared and didn't want ride.  The line was short.  It was only about a 30 minute wait.  When we got to the front of the line we asked Max what color car he wanted to sit in.  He said blue.  Then we asked who he wanted to ride with?  He said "Ride with Poppi!"  I had tears in my eyes, I was so proud of him.  We all rode the coaster, and the whole time my dad said Max was saying "Poppi go faster!"  When the ride was done he screamed "That was AMAZING!"  I didn't even know he knew that word. 

I realize that him being scared is more of an age thing rather than an Autism issue.  I know that being scared is a normal life feeling.  But the fact that he is feeling is what makes this whole event so special.  He is recognizing his own feelings.  He knows when he is excited, happy, and scared and more importantly can express these feelings.  Expressive language is something that children on the autism spectrum really struggle with.  They need to be taught how to appropriately express feelings and not just tantrum or scream.  Max made me so proud this past weekend.  And I can't wait to ride the coaster again!

iPads and Autism

Hi, it's the dad again. My name is Will.

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It's not a secret that tablet computers are great learning tools for kids with ASD. It's been reported on many times. There are even really boring scholarly articles written about it.

I want to give a shout out to some of the best learning apps I've come across. Max and Dexter both love these apps. You should check them out for your kids wether they are on the spectrum or not. Really good stuff here.

Endless Alphabet: I can't say enough about how great this app is. It teaches letters and vocabulary. It is beautifully designed and animated. And it has TONS of personality and fun. Endless Alphabet, Endless Reader, Endless Numbers, Endless Word Play. Get them all. Seriously.

Loopimal: This one teaches cause and effect relationships. And it's crazy fun. I'll even play with it sometimes. It's kind of brilliant.

Sago Mini Space Explorer: There are a whole bunch great of apps made by Sago Mini but my kids' favorite is the Space Explorer. They can be a bit pricey but if you watch you can find them on sale or in discount bundles. A lot of people would say that these apps are "just for fun" and aren't really "educational." But those people are dumb and don't understand just how important fun is in the life of a child.

These apps are great for any young child really. Check them out.

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! 

Walk Now For Autism Speaks - UTAH

This year our family is walking in the Walk Now for Autism Speaks - Utah Chapter.  Autism Speaks is a world wide charity organization.  We are really excited to give back to such a wonderful community.  We know first hand how beneficial being a part of a community of support means to a special needs family. 

If you would like to walk or donate to our team click on the link below. 
We would love to have a great turnout to support SPACESHIP MAX!! 
The walk is:

 SEPTEMBER 12th, 2015 

Sandy, Utah

South Towne Expo Center 9575 South State Street Sandy, UT 84070 - See more at: http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E#sthash.RdtjqmXs.dpuf

Sou

South Towne Expo Center 9575 South State Street Sandy, UT 84070 - See more at: http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E#sthash.RdtjqmXs.dpuf

South Towne Expo Center 

Here is the link to become a part of Team Spaceship Max:

South Towne Expo Center 9575 South State Street Sandy, UT 84070 - See more at: http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E#sthash.RdtjqmXs.dpuf

South Towne Expo Center 9575 South State Street Sandy, UT 84070 - See more at: http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E#sthash.RdtjqmXs.dpuf

http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E&supId=0&team=6429013&cj=Y