A small adjustment with huge results.

When something clicks it is the happiest of happiest. 
Max started his new medication about 6 weeks ago.  It took us 4 weeks to notice a difference.  It took us all 6 weeks to realize how something so small could help in a big way. 

Max hasn't been manic at night.  He is on a mood stabilizer so we were hoping the manic behaviors would calm down, and they did!  He is happier at school.  He has been moving through his programs with greater ease.  The biggest thing we have noticed is that his anxiety has decreased.  We are getting really positive feedback at school from his teachers, and it makes me so happy. 

Max has started really loving being surrounded by anything.  Tight, small spaces are his favorite.  This picture is at school. 

"He was very happy."

"Max did great at focusing!" 

 Max still has all his quirks and still has hard days, but they are not for hours upon hours all day every day.  The other night BOTH boys were asleep at 10pm and Will and I found ourselves able to watch Flip or Flop without interruption!  It was amazing. 

Will and I realize medication isn't for everyone.  But we needed to help Max.  And for us this has been an answer to a lot of prayers. 

Now if we could only convince Dexter to sleep in longer stretches things would be pretty perfect. 

If only...

Just let Max be Max

Today we took Max to the shark feeding at the aquarium and he loved it.  He is OBSESSED with sharks and dinosaurs at the moment. Max isn't the best in crowded situations. He yells, he says things over and over, he flaps and spins. Usually we try to stop him. Today Will and I didn't tell him to stop, or to calm down, or hold his flapping arms. He is his own kid. He doesn't realize he does these things, or when he does "stim" or repeat things it is because he is happy or sad. And today he was happy, so why should I stop him? I know socially it isn't "typical" or "acceptable" but he doesn't care. Why should I?

Today we got every bad look, fake smiles, mean glares, and one guy even asked will to "quiet him down." I wish this didn't happen, but I was prepared for it.  I smiled back, or just ignored their rude behaviors.  This was a day for Max and his sharks. And also a good day for me to realize that I need to let him just be him. I need to let go of my own insecurities.  

When Sharks Attack and Communication Declines.

Max is really into sharks and dinosaurs right now.  He is currently playing in the kitchen with 32 large dinosaurs, and about 6 Great White Sharks.  He pretends the sharks are in the water on the kitchen floor, and the counter is the beach.  He plays like this for hours upon hours every single day.  He plays by himself and doesn't want anyone, or anything, touching, moving, playing, or interrupting his Dinosaur and Shark display.  Max also makes Dinosaur sounds and pretends he is a dinosaur.  Which is cute at first, but Max literally thinks he is a dinosaur.  Trying to get him to move away from dinosaur play is a struggle daily.  He will stay in dinosaur mode for hours, no words would be used but instead he will growl at you if you try to talk to him.  He will jump on the furniture, throw furniture at the wall, and hit if you try to interrupt his dinosaur play.  No words.  No communication.  He does this to avoid doing things and to hide himself in another world.  The real world is daunting and scary.  His dinosaur world is perfect, and he controls all of it.  

Max made great strides with communication when he first started Giant Steps.  Huge strides.  Which we expected.  He went from not talking to picking up words and more words.  Max has what I like to cause a "Box" this box can be full of words, but once new words come in, old words leave.  The box has a limit.  And that is what we are currently dealing with.  People tell us all the time how he is talking more, or how he communicating better.  Yes, true, compared to where he was at.  But in reality he is 2 solid years behind his peers. If you look at a typical child language development for an almost 5 year old you will notice how far behind Max is.  Max in the last 6 months has plateaued.  He hasn't made much improvement in language skills.  He can't answer simple questions like:  What is your name?  How old are you?  He is working hard at school, but he gets frustrated, and overwhelmed.  His poor little brain is doing all the work it can.  So right now, as hard as it might sound, Max is at his peak of communication.  Could he improve?  Absolutely!  Will he still be working at language development at school - yes, for sure!  But the plan is to also make sure he has other ways to communicate. 

What is he working on at school?  These are just some of them.
-Getting dressed on his own.  Pulling up his pants, putting on a shirt, etc. 
-Recognizing all the letters of the alphabet, and numbers 1-20.  (He is good at this one.)
-Writing his name. 
-Recognizing familiar people in his life, and saying their name. 
-Introductions:  this is/that is
-The buddy system. 
-Not running off but staying in a line or in a group.
-Not going into dinosaur play while at school.  Staying Max all day at school. 

Comparing Max to typical children is hard.  It isn't a good indication at how far Max has come.  Will and I try not to compare but lets be honest, comparing is a natural.  We compare everything in life, from cars to houses, to hairstyles, to grades on tests.  It is a social norm.  Having a child who is developmentally behind can be frustrating, disappointing, and hard.  Will and I still get sad when we see children the same age as Max doing so much more than him.  Riding a bike, coloring a picture of what they did during the day, talking about their friends, writing their first and last name, picking out mismatched outfits and making decisions about their day.  This in no way means that I am not happy for these children, I am, but they are not MY child.  Max is unique, he is developing differently, and different is awesome.  But different is also hard, frustrating, and at times not socially acceptable. 

Here is a great video that illustrates these thoughts:
What people with Autism want you to know. 

So if you want to know about Dinosaurs, Sharks, and how to communicate with them Max can be your guide.  He is my guide.  He is guiding me on a journey that I never thought in a million years I would be on. 

On the floor, in the kitchen, with the dinosaurs. 

A bunch of confessions

Hey, Dapper Dan
You've both got your style
But Brother,
You're never fully dressed
Without a smile!

This is one of my all time favorite songs from one of my favorite movies, ANNIE.  I used to watch this daily as a child. 
You're never fully dressed without a smile. (Video Link)

I try my hardest to have a smile on my face most of the time.  Confession is that this has become a great method to hide my actual emotions.  I realize this, I am working on it. 

Confession #1 Max has been having a very hard time.  It would appear by pictures posted that he is doing well, and in some areas, yes this is the truth.  But Max has been very tough lately.  He is having manic episodes, combined with very down crying episodes.  This started about 6 months ago and it has escalated from home to school.
Last night Max took all the food out of the fridge, organized it by size, shape and color.  And while creative and funny it was the start of a downward spiral.  His brain and body start moving fast, he makes no sense and starts a very scary and upsetting 1-2 hour manic episode.  Last night he broke all the eggs on the floor, slammed his head on the wall, screamed at the top of his lungs while running and throwing all of his toys, and at the end peed all over the food that was on the table.  Then as if I turned off a switch in his brain he stops.  He crashes.  He cried and says "I so sorry Mommy" and places his head on my lap.  Then with the help of melatonin he sleeps.  This is every night.  It is exhausting and very concerning.  

Confession #2 Max had an MRI about a month ago.  Max has stress spots all over his brain.  As much as a 40-50 year old man.  He doesn't have seizures, but this is just a scary.  Your brain has natural stress spots, most disappear and heal.  Max shouldn't have many, he is 4.  But his brain goes 100 miles per hour until he eventually crashes.  He can't self regulate.  It is effecting his whole life. 

Confession #3 We are going to a psychologist next week.  We need some help and guidance.  While medication isn't the answer for everyone, and every child.  We have done everything in our power to help him.   We know there is a stigma about medications and being evaluated, but we need help.  We need to advocate for Max because he can't advocate for himself. 

Confession #4 Will and I are not super parents.  We are not stronger, wiser, more amazing, or better than any other parent.  We have two boys who need a lot of TLC, and any parent would do the same given the situation.  You would.  You could.  I am friends with a lot of parents in the special needs community and every one of them of course has days where they wish their child could have a "typical" childhood, but they wouldn't change their child.  Max and Dexter have made me a better person, not just a mother, but an overall person.  I am more accepting of others, I am more patient, I am a better teacher, wife and friend. 

These two boys have opened my eyes to the world of Autism.  And I am so proud to be a part of it. 

 

Giant Steps Auction 2016

Hello wonderful friends and family!

For the last 2 years, Max has attended Giant Steps, an amazing preschool just for autistic children.  When dealing with Autism, early intervention is very important.  One March 31, Giant Steps is having a charity dinner and auction.

The auction raises funds to pay for field trips, occupational therapy, music programs, classroom supplies, and a bunch of other fantastic stuff.  Our family wants to raise enough money to sponsor a table at the event.  We are organizing a donation team called "Spaceship Max" and we want you to join!  Your donation, combined with the donations of other friends and family, will make a big difference in the lives of some very special kids.

Please help us give back to a school that has changed all of our lives.  Giant Steps has helped us to enter Max's world.

For more information on how to donate go to friendsofgiantsteps.org.  When you make a donation, either by PayPal or by check, be sure to note that you are a part of team "Spaceship Max."  Use the memo line on a check, and to donate online click the donate button on the website.  Then once directed to paypal type a note by clicking on "add special note to the seller" line.

Thank you, from Will and Tiffany Strong

*A special thank you to Bryan Sours Photography for taking the amazing pictures of Max.

Autism can be complicated.

A much needed update on my sweet Dexter. 
Something I have learned over the past 2.5 years of Dexter's life is to always go with my gut.  I have always thought there was something going on with Dexter, and it was more than just a virus.  And in between all the blood work, doctor visits, specialists, and sleepless nights I knew there was something else going on with my sweet little boy. 

In November I sought out a second opinion about what I have continued to notice with Dexter.  I am so grateful for Dr. Heather Harrison and her listening ear.  Because of her in December we were able to have an EEG and MRI of his brain done.  It was noticed in the EEG that he was having seizures. 

We then were sent to a Neurologist.  We finally got into the Neurologist yesterday.  Dexter has Autism induced Epilepsy.  This is common with kids with Autism. (33% of kids with autism have epilepsy) The doctor (Dr. Nelson in Provo) was very knowledgeable with children with autism and he was great at answering our questions.  Dexter is going to be starting a daily medication that he will take most likely forever.  The medication will need to be adjusted, like all medications, as he grows.  There are side effects, but hopefully we will see minimal.  He goes back for follow-ups monthly.  Then twice a year visits once the medications are stable. 

Dexter is autistic, and epilepsy is a side effect.  Most likely his sleep issues are from autism and also the seizures.  We are hopefully that once the seizures are under control his sleep will improve.  There are a lot doctors who don't know about autism, but there is a lot doctors know about seizures.  So we are grateful for that.  Over stimulation is a primary cause of seizures for children on the spectrum.  We need to start being more aware of what overstimulates Dexter and what makes his brain seize and body shake. 

Here is a good article explaining the links and what Dexter has been dealing with since birth:
https://www.autismspeaks.org/family-services/epilepsy

Dexter is a very strong little boy to have been dealing with this since birth.  He has been dealing with night terrors, fevers, failure to thrive, growth issues, headaches, daily seizures, little sleep, and psychotic episodes (uncontrollable screaming, shaking, not knowing where he is, hallucinations, etc).  But if you know Dexter you will notice he is a very happy kid.  This is a huge blessing.  I am so glad he hasn't lost his sense of happiness through all of these trials.  

Thank you for all your support.  We know our family is complicated but Will and I honestly wouldn't have it any other way, we don't know any other way. 

Merry Christmas 2015

Merry Christmas from Spaceship Max!  Thank you for all the love and support over the last two years.  It has been a huge source of comfort to have so much love sent our way as we travel through life with our two special boys.  We hope that you continue to follow our journey.  Have a wonderful Holiday with your family and friends!  Much love, Will, Tiffany, Max and Dexter.