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.

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. 

 

Giant Steps Charity Dinner and Auction

Max goes to a wonderful preschool.  I have been so amazed at the progress he has made because of Giant Steps Autism Preschool.  He has the most amazing teacher, aides, and support team.  They go above and beyond the call of teacher.  They are friends, advocates, and support my entire family.
Just yesterday Max's teacher offered to come to our house to help with potty training.  It is gestures like that that make Giant Steps amazing.

Giant Steps is holding a Charity Dinner and Auction to raise money for the classrooms.  It cost over $250,000 dollars to start a new preschool.  There are currently over 130 children on the waiting list for the five classrooms in Utah County.  Each classroom can enroll 10-12 students.  There needs to be more classrooms in Utah available for children on the Autism Spectrum.  Support for the entire family is key, and so is early intervention before a child enters Kindergarten. 

The Charity Dinner and Auction is MARCH 28, 2015.

Recently the Provo Mayor did a blog post on Giant Steps Autism Preschool.

Giant Steps was also on the news promoting the school and the Charity Auction. You can watch the video on the Mayors Blog post or on the Giant Steps Website. 

We need your help.  

If you know of a business, family, or would like to personally make a donation or be a sponsor please either contact me at Tiffstrong707@gmail.com, or follow the link to directly donate on the Giant Steps Website.  Please share this blog post with others if you feel inclined.  

Follow Giant Steps on facebook.  Join the event page to get updates and also view items that have already been donated for the auction.

And most of all THANK YOU for your love and support.  Max is so lucky to have so many people in his life that love, care, and pray for him on a daily basis.  We are so grateful as a family and feel your love daily.   

 We have entered Max's world 

and it is such a wonderful world to be in!