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. 

 

KUTV-2 News Story on Giant Steps

Here is the link for the news story that was done tonight on KUTV-2:
I will have more information soon about the Auction.
I am so proud to be a part of Giant Steps Preschool. I am so proud of our family.
Max is growing and learning, what more can I ask for? 

http://www.kutv.com/news/features/top-stories/stories/For-those-who-can-get-enrolled-program-making-giant-steps-for-families-facing-autism-71995.shtml#.VMmv8naEotw

"Max has found a voice at Giant Steps, you can see it in his eyes."  -Poppi.

There are bad nights

Max had an awful night last night.
He was doing things he hasn't done in months. 
We give him 1mg of melatonin to help him relax and allow his body to sleep.  But last night, his poor mind was racing a thousand miles per hour.  He was up saying gibbering, echoing and moving for hours.  Will was up with him almost until 2am when his brain finally turned off.  I went in to check on Max and Will at 12am, and Max was very awake, talking 50 miles per hour.  Now when I say "talking" he repeats sounds, and letters, but they don't mean anything. 

This morning he was up at 7am.  So with very little sleep he is ready to face the day.  And Max is non-stop.  He doesn't rest.  So here is hoping for a good nap for everyone today!

I know there are going to be nights like this.  I know every child has bad nights, and bad days.  It makes me realize how far we have come.  How much good we are doing for Max because he doesn't have awful, frustrating, exhausting nights ALL the time.  I feel so blessed to have found out early that Max is Autistic so we can help him, and that our family can move forward. 

Early intervention is so important. 
Know the early signs of Autism.  
If you question something developmentally with your child ask for help and guidance. 
Go with your gut.  Especially Mom Guts.  They are powerful!
Ask for help, and don't be ashamed of your child. 
Helping your child will help you. 

Max is a champ.  He makes me a very happy and proud Mom. 

My gut feeling

I think the most asked question I get about Max is "When did you know something was wrong?"  This is a hard question to answer, because it wasn't a specific even but a series of things that made me wonder if my child was "different."

One
His first birthday.  Max was always a very laid back child.  He smiled and was quiet.  But being the center of attention was something he didn't like.  At his first birthday he screamed and cried uncontrollably at the first note of happy birthday.  It took him 15-20 minutes after the song was over to calm down.

This was a blog post from March 2012, when Max was 9 months old:
"Max has started clapping and it is darling.  If you say "Max Clap" he will.  He still doesn't like a whole room of people clapping and I still see him get a sad face during a clapping moment in Elmo's World, but he can clap now and that is what counts. "

Two
Every mother compares.  And even though I was told not to, I still did.  Max wasn't saying words or even sounds at one, or even 18 months.  He wasn't waiving bye-bye or saying hi.
This was a huge indication to me.  But again, even my husband, said he will learn, he is only 18 months.

Three
Nursery.  Watching my little baby stand in a corner and cry was heart wrenching.  He wouldn't interact with the other children, he would flap his hands and hit his hands against his head.  When snack time or singing time came around it was a huge melt down.

Four
The tantrums.  He was physically hurting himself.

Five
I just knew.  I don't know how to explain it, but I knew from the time he was very little that there was something wrong.  But now I know that it isn't a "wrong" but just a different way.  Max just learns different.

Today I went out alone with Max.  He didn't have his Dad, he was on a date just with his Mom.  We held hands, we made three different stops, and we looked at trucks.  He didn't tantrum, he didn't run away, he held my hand.  It was perfect.  My gut isn't hurting like it used to, I feel good about what we are doing for Max.  I feel empowered.  I am Max's Mom.  

I want to emphasize to go and get help if you think something isn't right.  Even if nothing comes of it, go with your gut.  I am going to do a post of the initial tests we filled out for Max and how they confirmed my gut feeling. 

ASD signs in babies

I wish I could go back and be more aware of the signs Max showed at a baby that he had Autism.  We are grateful that we picked up on the signs as early as we did so that he can get the help he needs now, but the guilt is still there.

Why didn't I notice the signs?  Why didn't I pick up on little things?  Why do people say "don't feel guilty, don't feel bad, you didn't know..." when in all honestly they too know they would feel the same guilt?  Max was our first child we didn't know what to expect for a lot of these things. 

A lot of things we have learned through Dexter.  He IS doing these things, and we are grateful for him because it was Dexter who showed us that Max wasn't hitting the natural milestones.  

Here is our list of things we wished we would have noticed:
1.  Max could sit on his own and stare at the fan for as long as we would let him.  Without needing anything, crying, fussing, or  making much noise at all.

We were told time and time again "What a good baby he is, he is so quiet, he hardly needs you for anything..."  And he was a great baby, and a very cute one at that.  

2.  He didn't make eye contact or stay focused.  He would turn his head and look at you in the corner of his eyes.  He wouldn't follow me around a room and wasn't concerned about where we were.

3.  Max wasn't making babbling noises or much noise at all.  He wasn't communicating.  We taught him some sign language and that was very helpful.

4.  He didn't point, clap, or wave bye-bye.  These three things are something we now know to be an indicator that your child isn't picking up on social cues.

5.  Max didn't reach up for us to pick him up.  He would wait for us to pick him up.

6.  Max made unusual body movements.  He would stiffen his legs, arch his back, flick his fingers in from of his face, or hit his head against the floor repeatedly.

7.  Max DID smile a lot, but he wouldn't imitative other emotions like sad, and mad.  He still only recognizes happy.  Mad and sad are emotions that he just doesn't understand. 

A lot of these things Max still does.  We are working hard to improve all areas.  Right now we are currently working on social cues like saying bye bye and waving.

There is a false idea that autism can't be diagnosed in someone so young.  This is false.  The earlier the diagnosis the better.  Early intervention programs can be so helpful and can encourage your child to have more success in school, and in life.  

Here are some links that we found helpful:
http://www.cbsnews.com/media/10-early-warning-signs-of-autism/

http://www.helpguide.org/mental/autism_signs_symptoms.htm