The People We've Met Along The Way

This last week, I've been reminded of how much progress The Boy's made.  Like the other night when he sang "If You're Happy and You Know It" at 4 in the morning.  How amazed I was that he was able to sing the whole song and do all the steps simultaneously - effortlessly.  

I think about how when The Boy started  Early Intervention he had no words or way of communicating.  How he gradually acquired five words, then ten and now - three years later - he has enough words to carry on an argument. 

Me: How about Pizza for dinner?

The Boy: No.  How about another dinner?  I want Chinese rice.

And I think about all the hours of therapy it has taken him to get to this point.

  

All the people at school.  All the teachers, therapists and aides that have held his hand.  The revolving door of therapists coming in and out our home.  All the extra related services.  All the Board of Ed officials that I spoke to, faxed, emailed or argued  disagreed with.

All the people we've met along the way to help The Boy.  And us.  

All the people that provided advice.  Offered suggestions.  Gave us support.  All the people who listened.  Who let me cry in their offices.  Who willingly gave their time and energy to talk to me, answer my questions and address my concerns. 


All the people who were so patient in teaching The Boy, the most basic of tasks.  


All the people who rejoiced in The Boy's achievements as much as we did.  All the people who advocated for us.  All the people who assured me that there was hope, that The Boy had potential.  All the people who told me, everything will be okay. 


It wasn't one person, one program or one therapy.  It was a collective effort to get us to this point.  We could not have done this alone.  And I can't think of all the progress The Boy has made without thinking about the people we've met along the way.


How can I possibly thank them?  How can I possibly repay them?  There is no monetary value that I can place on that kind of assistance.  Or on the amount of gratitude I have.  And how can they possibly know the difference they've made in our lives? 

Yesterday was The Boy's final day of school. (read post here)  And after I put him on the school bus and walked away, I couldn't help but feel sad.  As if we were losing something special.  We've said goodbye to so many therapists over the last three years.   It still doesn't get  any easier.  The Boy doesn't really know the difference.  He's too young to value their importance as much as I do.  

I'm sure as the years pass, he may forget their names, their faces.  But I will remember.  And I will remind him.  The people that have walked into our lives, the ones I never expected to meet, the ones that changed our lives and the way we live - will never be forgotten.     

 

This post is included in S-O-S Best of the Best Edition 9: Therapy and Special Needs Kids. Best of the Best Editions are published on the 15th of every month.

Words With: Danette Schott (Founder of S-O-S Research)

AW: What was your first reaction to your child's diagnosis?

DS: Our daughter spent the first 16 months of her life in a Russian orphanage. When an infant experiences early deprivation, it is very difficult for there not to be some type of negative effect. That being said, it is very different knowing that there will be issues and actually hearing a diagnosis…or in our case, multiple diagnoses.

I think it is typical at the beginning to want to believe that the doctors are wrong. But I didn’t spend much time doing this, because in the midst of disbelief, I was also searching for answers, treatment options, and solutions.

AW: What was your defining moment of acceptance?

DS: I don’t really know if there was a definitive “moment of acceptance.” As a mother, you want the best for your child. So although I wanted to disbelieve the doctors, I also immediately got into action to figure out what to do. I understood the concept of early intervention, so I was aware of the fact that I did not want to lose any time. So while I worked through my emotions, I also worked through a treatment plan. By continuously moving ahead, I guess I just found myself in the company of acceptance.

AW: What inspired you to start your blog? Website?  

DS: I used my professional training as a researcher to find solutions to my daughter’s problems. As time went on, I met many parents who did not know where to start or what to do. I spent a lot of time on the phone and having coffee with other parents, trying to share my problem-solving process. As my daughter entered her teenage years, I found I had more time of my own. I had the desire to share with other parents, but I wanted to do it on a bigger scale, more than just one parent at a time. I developed a three stage problem-solving process, where each stage contains custom steps to walk parents through the special needs issues.

My blog, Help! S-O-S for Parents, was an off-shoot of what I now call Step-by-Step. I started the blog with the idea of sharing more information with parents, but not really knowing where it would go. It has developed into a place to conduct book and product reviews, interview experts, highlight useful resources, and document tips.

What has been your most rewarding aspect of being special needs writer/advocate?

It’s an amazing feeling when another parent comments that something I shared is exactly what they needed. Being able to help parents solve a problem or find what they need is such a rewarding experience. It sums up why I founded S-O-S Research.

That being said, another fabulous benefit is getting to know all the talented, bright, and wonderful parents who are also blogging, writing books, giving talks, and sharing what they have learned. It’s a great community and I am proud to be a part of it.

AW: What advice would you offer parents of recently diagnosed children?

DS: I am not a believer in the wait-and-see approach. Once your child has received a diagnosis, you need to get to information as quickly as possible in order to formulate a treatment plan. Once a plan has been established, parents will probably need to coordinate with their local school district to determine how they can work together to make everything happen.

Parents should be prepared for the school district to progress slowly. Districts are busy and overloaded. This is another reason why it is important to acquire your information quickly and to get things moving.

AW: Feelings on diagnosis in 6 words or less.

DS: …opened my eyes, softened my heart…

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Danette M. Schott, M.A. is the Founder of S-O-S Research, a provider of information on “invisible” special needs for parents, teachers, and other professionals.  S-O-S Step-by-Step offers free information resources in a structured easy to follow format and Help! S-O-S for Parents blog presents book reviews, giveaways, expert interviews, web resources, and tips.

Sleep Issues, Bedtime Routines and Special Needs

Best of the Best, Edition 8: Sleep Issues & Bedtime and Special Needs 

"Over 20 bloggers have shared their personal experiences, provided sleep resources, and outlined tips for helping children, teens, and parents find sleep. This incredible group of bloggers have experience with many different invisible special needs, such as ADHD, anxiety, sensory processing disorder, and autism. There’s something for everyone!" 

I have to say this is my favorite edition so far.   I loved reading everyone's experiences, especially the older kids.  It gave me an idea of what's in store.  I also picked up some great tips and techniques.  Not sure if it will work but it's all about trial and error with our kids.  

Hope you all have a good night's sleep tonight!

Lisa Quinones-Fontanez presents This Bed Ain’t Big Enough for 3 posted at Autism Wonderland. Prior to becoming a parent, Lisa had many ideas, “One of my ideas was: I would not let my child sleep in our bed.” Discover why Lisa has changed her belief on this idea and what her evenings often look like.

Best of the Best, Edition 7: Media and Kids with Special Needs

This month's Best of the Best Edition focuses on Media and Special Needs Kids and I'm proud to have my post - Managing Screen Time. Easier Said Than Done included. Once again, Danette Schott, founder of S-O-S Research, has collected over 25 posts from various writers.  The subtopics include: Advice for handling media, Positive Experiences with Media and Negative Experiences with Media.  It truly is a privilege to be included with such inspiring parents and writers.  I thank Danette for providing the platform for us to share our work and to learn from each other.   

http://sos-research-blog.com/06/best-of-the-best-edition-7-media-and-kids-with-special-needs/

  

And, in case you've missed it...previous BoB posts:

Anxiety and Stress (Edition 6)
Book Reviews (Edition 5)
Family Life (Edition 4)*
School Issues (Edition 3)
Social & Play Skills (Edition 2)
Autism and Treatment Options (Edition 1)*

*AutismWonderland not featured

S-O-S Best of the Best, Edition 5: $1,100 Giveaway Bonanza!

I am especially proud to be among the blog writers in the 5th Edition of S-O-S Best of the Best Book Review and Giveaway Bonanza.  

In honor of Autism Awareness Month and with respect to other Invisible Special Needs (ADHD, SPD and mental illness), Danette M. Schott, M.A. (founder of S-O-S Research) united bloggers from all over the country to review over 50 books, DVDs and even a b-Calm.  Many of the blog writers are hosting giveaways of the products they've reviewed - totaling $1,100 in giveaways!  Are you feeling lucky?  Below are links to my reviews and giveaways but you can check out the full list at S-O-S Best of the Best Book Review and Giveaway Bonanza.

Awesome Autism Quotes: Inspiration, Humor & Reflections by Margaret S. Price

• Reviewed by Lisa Quinones-Fontanez at Autism Wonderland. “The quotes Price has selected will provide even the seasoned parent new insight into the world of autism. While her reflections following the quotes provide comfort to the parent who has recently heard the words: your child has autism. “

Off We Go to the Grocery Store, Off We Go to the Dentist, and Off We Go for a Haircut by Avril Webster

• Reviewed by Lisa Quinones-Fontanez at Autism Wonderland. “Avril Webster’s social story series, ‘Off We Go,’ published by  Woodbine House focus on everyday situations that children will eventually need to experience: going for a haircut, to the grocery store or to the dentist."

This is Gabriel Making Sense of School: A Book About Sensory Processing Disorder by Hartley Steiner

• Reviewed by Lisa Quinones-Fontanez at Autism Wonderland. “Steiner makes SPD easy enough for everyone to understand."

The Other Kid by Lorraine Donlon (giveaway closed)

• Reviewed by Lisa Quinones-Fontanez at Autism Wonderland. “Targeted for children between five and twelve years old, The Other Kid, validates the complex feelings of being the sibling to a brother or sister with special needs."

Best of the Best 3: School Issues

I am proud to say that for the 2nd month in a row, I've been selected as one of the Best of the Best bloggers on Help! S-O-S for Parents.  This month's topic is school issues - from bullies to school work to IEPs to morning routines and everything else in between!  Note the Tags: aspergers, autism, autism spectrum, behavior solutions, bullying, educational apps, gifted, grades, homework, IEP, inclusion, least restrictive environment, morning routine, organizational skills, para pro, paraprofessionals, play dates, reading, report card, residential school, rituals, routine, routines, sensory diet, sensory tips, shadow aide, special needs, therapeutic day school, visual learning technique 

My post that was selected was Manic Weekday Mornings.

It's wonderful to be associated with so many amazing bloggers.  So I urge you to take a moment and read the Best of the Best blog posts, follow the blogs and most especially comment.   

Happy Reading!

(S-O-S for Parents) Best of the Best, Edition 2: Social and Play Skills

Danette M. Schott, M.A. is founder of S-O-S Research - providing guidance and resources for parents. Danette's blog SOS-Research features various bloggers in the monthly Best of the Best series. This month's topic was Social and Play Skills.  I am incredibly proud that one of my posts is included in the Best of the Best series!  Below is Danette's description of Child's Play:       

Social Interaction. Lisa Quinones-Fontanez presents Child’s Play posted at Autism Wonderland. Lisa observes her son in numerous social situations and his inability to engage in play activities with other children. She shares, "It hurts because I feel like maybe he’s missing out on something special. That he’s being cheated out of the joy of just being a kid."