Life isn't Typical for our Family - Dexter Update

The one thing I wanted to accomplish by having a blog for Max was to be a advocate for early intervention. Your child's Well-Check-Ups are so important and being completely honest with your child's doctor. I used to hate filling out the questionnaires for Max because he wasn't meeting hardly any of the age appropriate milestones. I will admit that a few times the right answer was not what I admitted too. I wanted to have a typical child. But what I have learned is nothing is typical.

Because of early intervention, our pediatrician and being an advocate for Max we have been able to help him strive. We have found a preschool that we all adore with a community of parents that all want the best for their Autistic children. 

The reason Well-Check-Ups are so important because they help monitor progress. Max started really having Autistic symptoms that were very noticeable at age two. And this is common. As children with autism develop their symptoms become more prevalent.  And in some cases Autistic Signs might not even be seen until 2 or 3 years.  They could even have typical development but then start to loose them. This would include communication skills, motor skills, and the ability to be self aware. (Being self aware for example is seeing emotions in others like being sad, happy, mad, responding to your name, being able to self sooth, etc)  That is what happened with Max.  He lost words, and the ability to communicate and then stopped making sounds or hand gestures all together around age 2. 

Max is about 20-24 months behind his peers. His communication skills and self awareness is something that is developing at a slower rate. And that is okay. Progress is progress. 

Dexter (Max's brother) is now 21 months. He will turn two in July. 

 

Dexter has been slower to develop in the communication and gross motor area but it wasn't a worry for me. Dexter also has great eye contact and has since birth. Dexter loves to smile just like Max does and is generally a very happy toddler. 

Around Halloween last year (2014) we started slowly noticing things that worried us.  They were subtle at first but then over time they became more and more concerning.  We talked with his doctor and we were told to watch him, document specific concerns and even take video of our concerns, then if needed contact the early intervention program we used with Max. We also spoke with Max's teachers and expressed our concerns. Dexter is currently seeing an early intervention specialist for speech and Occupational Therapy (OT).  Things have been changing for Dexter and in the future I expect him to need some TLC just like Max.  But for now we are doing all that we can at his age to help him communicate and develop.

Dexter has never slept through the night. His longest stretch since birth has been 4 hours. He panics, screams, gets a rapid heart beat, hits his head against the wall and has major anxiety.  He has been making himself so upset that he throws up.  It is very scary to experience, and make me feel so helpless. The only this that calms him is breastfeeding. So yes I am still breastfeeding my 21 month old. Sleep has progressively gotten worse along with other concerning signs that something with Dexter isn't right. Will and I are so grateful that we have some knowledge to understand what to look for and where to go for help. As of right now prayers that we are lead in the right direction for Dexter and for our whole family would be greatly appreciated. 

Will have some hunches and gut feelings about what is going on but until we know for sure and have a family plan we want to stay positive and do what is best for Dexter. 

A rare occurrence that only last 10 minutes but it was a peaceful ten minutes.

For now we are working with Max's amazing team of teachers, our pediatrician and other people to help us with Dexter. Sleep is so important. But finding out the cause is also another piece to the puzzle. My family means the world to me. We have our struggles and our life isn't typical. I might only be getting 2-4 hours of sleep a night but right now I wouldn't have it any other way. 

 

Learning from Dexter

Max and his younger brother Dexter have a very sweet relationship.  They truly love each other.  Dexter is the first person Max says hi to and gives hugs to after school.  Dexter loves to give Max hugs and kisses.  It is pretty adorable.

One thing I never thought was how much Dexter will teach and influence Max.  Dexter and Max are physically very different.  Max is huge and has always been in the 100% or above on all his growth charts.  Dexter has been between 1% and 20% on all his growth charts since birth. 
At 10 months Max weighed 30 pounds and was 30 inches.  Dexter is only 23.5 pounds and 31 but he is 21 months.  So they are very opposite.

 Both boys at 10 months old.  #thebros

Dexter can't fit into the outfit Max is wearing yet.  Ha!

Max and Dexter developmentally are very close in age.  Max is about 2 years behind peers (typical children) that are his age.  Dexter has a slight speech delay, but he is getting some early intervention help.  So they are able to really influence each other. 

Today we got the dreaded call at school.  Max bit another student.  He has never bit someone before.  I was hoping to avoid this.  But, alas, he bit someone.  My heart sank.  Max is such a tender heart.  He cares a lot about others, and is always saying "That ok mom" when I bump into something or get hurt somehow.  So now what?  Where is he learning this from?  Yes, it was the first time, but he never has done it before?  His teacher asked me if Dexter bites.  I said yes, he is teething, he bites everything.  She said, he is watching Dexter.  He is testing out what Dexter is doing.  Ah!  That makes sense.

I can work with this.  He is influenced so much by those around him, and doesn't understand facial expressions well at all, so we really need to talk to him and repeat things over and over for him to grasp a concept.  For example Max used to throw all of his trucks and cars in the sink.  This was such a hard stage.  Because everything would go int the sink.  And he would get SO mad when we would clean it up.  We realized that he was "cleaning" and we were just not seeing his perspective.  When we had dirty dishes we would put them in the sink.  When he was done playing with a car, he would want to "clean up" and put it in the sink.  So in his mind, nothing was wrong.  He was learning a social situation.  We worked with him and showed him over and over what goes in the sink, and about 4-6 months later Max doesn't put all toys in the sink now.  It just took time.

Looking back on a lot of situations I can see how he was being so literal.  Because that is how he views the world.  At this years Easter egg hunt we told him to "Pick up all the eggs" and he did a great job.  But when he came across an egg that was shaped like a basketball, he looked at it and said 'Not an egg!" and threw it to the ground.  Literal thinking.

 

Dexter will continue to teach Max.  He will show him the world better than we can.  I love that I have two boys close in age so they can help each other.  Dexter adores Max, and Max depends on Dexter.  It is a bond that will grow.  I love them to pieces.  

My shy boy and my camera happy boy.  This picture explains them so well. 

Autism Awareness: What have I learned in the past year?

Last April 2, 2014 Autism was so new to me.  It was very fresh. I was so lost and confused.  I was heartbroken and very worried about Max's future.  Will and I had little knowledge about Autism and we didn't know how to help our son.  I have over the years as a teacher taught some students on the Autistic Spectrum, but I had never thought about having a child of my own with special needs.  And honestly who does?  How can you prepare for that?

Christmas 2013 - Max was official diagnosed January 2014.

Fast forward a year.  I am still learning everyday.  I want to continue to learn as Max grows and enters different stages of life.  One thing is certain I am more confident as a Autism Mom.  I am not angry or upset, but have the deepest joy and love for Max.  He is amazing just the way he is.  He has led us into his world, and I am so lucky he has.

10 things I have learned in the last year in not particular order:

1.  You have to take suggestions of how to "treat" a child with Autism just like that - a suggestion.  We have been approached by so many people telling us about the latest treatments: Natural oils that cure Autism, do not vaccinate, not allowing him to drink cows milk, taking red dye out of his diet completely, etc.  Some suggestions have been wonderful and we are grateful for them. But we don't use all suggestions because we have to do what we feel is best for our child. 

2.  Vaccinations do NOT cause autism.  It has been proven over and over again.  Then end.

3.  Early intervention is KEY.  I have said this so many times but if you notice something doesn't seem right developmentally with your child or you have a gut feeling that your child isn't thriving socially talk to your pediatrician.  Early intervention can start as early as 18 months.

4.  Find a support group.  I don't know what I would do without friend and family, but sometimes you just need to talk to someone who has a child that is dealing with the same issues your child is.  I love being a part of the Giant Steps community.  I love being able to connect with other Moms to share stories, ask questions, and get advice.

Max's first day at Giant Steps November 2014

5.  Take time for yourself.  Everyone needs a break.  Everyone needs time to be alone and not be in charge.  I go to the gym, I zone out on my ipod, and I watch bad television.  But it helps.

6.  Be honest with your feelings.  There are really tough days.  There are days where Max has had tantrum after tantrum that last anywhere from 5 minutes to 45, didn't sleep the night before, has only had chocolate milk to drink all day, and won't put on anything but a diaper.  Oh and to top it off has watched the same Thomas the Train Episode on repeat.  This is a frustrating day.  And it is okay to be frustrated.  It is okay to cry, to be mad, and upset.  Validate your feelings.

7.  Progress is progress.  Max is about 18 months to 2 years behind his peers.  It is hard to see other friends with children the same age as Max doing things that Max can't do yet.  But on the flip side it is so rewarding to see him accomplish even the littlest thing.  Max is working on full sentences with commands at school right now.  He says "I want choco-milk."  Or "I want bread."  This is huge progress.  Socially Max says "Hi and Bye" and waves to people who are entering a room.  I love progress because it can be little or big but it is moving forward, it is a step in the right direction.

8.  I used to be so scared to take Max out of the house.  I hated taking him anywhere because I didn't want people to stare at him while he was having a tantrum, or crawling on the floor watching the wheels of the shopping cart, or repeating the same word while flapping his hands.  I was embarrassed.  And that was the wrong thinking.  Max isn't embarrassed, he doesn't know any better, and you know what he is happy crawling on the floor.  I needed to change my thinking.  Max deserves the same experiences other kids have, and if that means a few tantrums and people saying something rude or staring at us, so be it.

9.  Talk about your child.  People are curious.  It is human nature.  I am open to telling people Max is Autistic.  I am not trying to excuse a behavior, I am hoping it makes people aware.  People are different.  Children are different.

"Everyone is handed adversity in life. No one's journey is easy. It's how they handle it that makes people unique."

10.  Laugh.  A lot.  Oh do I laugh a lot.  Max has said and done the funniest things.  He makes jokes, and wants to make you smile.  He is a fun kid.  Entering his world as been the BEST decision I have made as a mother.  I love his laugh, and I hope he continues to like mine.

Autism Awareness Month April 2015 - I hope you all Light It Up Blue for Max and for Autism.

Thank you for your love, support, encouraging words, and prayers.  It means so much.
Tiffany Strong