Never Say Never

So many parents and family members have had to hear the news, "I'm sorry, your child has________"  This is often followed by a litany of statements beginning with "never" and "can't."

Your son will never be able to...
Your daughter can't....
You can't expect...
She never will...
He won't ever....

But this is doesn't have be the way it really is for your child.  I have been blessed by so many families who heard all those nevers and can't and responded with, "you want to bet on that?"

This young man lives in one of those families.  His parents were told he would never talk, it says so in all the medical texts in relation to his syndrome.  His pallet is misshapen but he doesn't "have the capacity" anyway.  His mom and dad had the courage and strength to not listen to the medical textbook, but rather, to listen to their son and their heart.  You see, he was constantly attempting to talk.  They got him a Vantage and he could use it to talk more fluidly than the salesperson but still, he wanted to talk with his voice. 

So, his parents set out to find a doctor that would try to repair his pallet.  They were judged by so many to "be in denial" or "refusing to hear what we know from medical science."  But still, they moved forward.  They had to travel several states away and spend the summer in a hospital and then rehabilitation and therapy, but they did it for him.  6 short months later, the journey was rewarded beyond anyone's hope.  Or at least, beyond the hope of those on the outside looking in.  For his parents, they were not surprised, just grateful.

Do you want to hear what love, courage, and strength sounds like?

That’s What It's All About

As a Special Education teacher I spend my days planning, teaching, and advocating for a future.  Not my future, the future of my students.  We all talk about, “one day when they are older” or “when they go to  high school” but do we really think about what we want.  I know, you are saying, yes, I think about the students job and living arrangement.  Their social group and how their family will support them.   But do we consider the little things, the moments that we all remember from our high school days but see as small moments.  I have to say, that I forgot the little things. 

Or at least I did until a young man, whom I have been fortunate enough to have in my life the past 12 years reminded me what really mattered.  He is an amazing young man who happens to use an augmentative communication device and wheelchair.  But please, remember, he is a young man.  He has crushes on girls, passions, and hopes just like everyone.  One of his hopes was fulfilled by a cousin who saw what I didn’t;  the little things matter.

reproduced with permission from their mom's and the young woman

Yes, I am talking about prom.  He went to prom, complete with two beautiful dates who danced with him and enjoyed it along side him.  His younger brother fit his chair with a camera and he shared the expeience later with his family in film as using the talker is more tedious.  At one point, as the juniors and seniors all circled around while individuals danced in and out of the circle, the young man’s classmates made room and had him join the center for his few seconds of dance solo.  Yes, one night of prom matters, and to a young junior, it is a highlight.  Prom wasn’t a single night.  No, it was a lifetime of memory.  I will always be grateful that he was my teacher as to how to plan what matters most in a person’s life.  I will carry this lesson with me the next time I start a sentence with “One day….”

Thanks, all three of you!!!

Tr*ns!t!@n!!!!

“Transition” is the word that I have often heard said as an explicative as well as through tears. It is a simple word really.

 Transition: noun --the process or a period of changing from one state or condition to another.

However, “transitioning” is not so simple.  A parent of any child worries from the minute they first hold that small miracle until, well, forever.  This is true for all parents.  But when they child’s still being alive is a miracle, when the worries are about tube feedings, immune deficiencies, upcoming surgeries, and seemingly insurmountable communication delays, the worries are magnified. 

How can the next school or teacher possibly know everything they need to know for my child?  Will they learn how to use their communication device?  How to tell the difference between the in pain cry and the tired and sick cry?  Will they know how important it is that they get 10 minutes of sensory input before being asked to sit?  Will the teacher or school communicate with me?  How will they?  Will I know what my child is doing during the day?   How will I know if my child is getting their needs met?   Will the IEP be followed or changed?

This cycle of questioning starts at the beginning of the year of transition and continues until the next year and into the fall.  The teachers such as myself ask very similar questions as we are also attached to the child we have taught, laughed with, calmed, cried with, and loved.  Knowing the professionals at the next site always makes it easier as the questions are answered, and yet, for me at least, I still know that my class will change.  Each child brings their own personality and those personalities combine to create that class. 

As I prepare for the changes, the families, students, and next school or teacher are also preparing.  I watch the families I have spent hours and many emails talking to struggle and wish that I could ease their fears.  What I have learned is, the professionals receiving the child are all good and wonderful people with various levels of experience and various philosophies but they are good people.  They will love the child as I have, but in their own way.  The thing that the parents and I can do is make certain the current setting a welcome place for visiting and collaborating.

I recently had an Eligibility (Triennial) IEP for a student who I have been fortunate enough to work with for the past 6 and ¾ years.  The special education teacher and speech pathologist for the middle school came to the meeting.  Additionally the teacher and I had collaborated on ideas for the goals prior to the meeting.  We were a team and so, the transition was in some ways, already completed.  It was a small step but it gave everyone who has worked with this student this year the chance to ask questions, think trough possible concerns, and, most importantly, begin talking to each other.

Did this stop the parents’ questions?  Of course not! Their child hasn’t stopped growing, changing, trying new things.  There will always be questions, but at least now they have someone to ask for answers.  It is a small thing, but something.

In the end though, I am still going to cry after the last day of school.  Tears of joy.  Tears of hope.  And selfish tears that I will not have this student with me each day.