Bright Beacon Blogs

There are moments when the pressure, fear, frustration and anxiety of being a parent become so overwhelming and so daunting that a meltdown, at some point, is inevitable.  That is how I felt last Friday.  I came home from work, threw myself on the sofa, I put my head in my hands and cried - loudly.  It was the kind of cry that takes over your entire body, my shoulders shook, my head hurt and my chest ached.  I kept wiping away my tears with both hands but the tears continued to spill out from my eyes. And I felt as small and as helpless as Alice, drowning in the pool of tears. 

I had spent the last week researching schools for next year, toured two schools (one of them featured a padded room).  I questioned whether or not I was doing the right thing by Norrin.  And I couldn't help but wonder if there was a place for him...and would I be able to find it?

And then in the middle of my hysterical sloppy meltdown, Norrin walked in the room.  His eyebrows furrowed and he looked at me with genuine concern and confusion.  He put his hands on my face and said, "Do not be afraid Mommy," and gave me a kiss.  Of course, this made me cry even more. In addition to everything I had been feeling, now I had guilt; I hated for Norrin to see me cry.  Norrin then jumped off the sofa and ran away.  He returned with a single square of toilet paper and dried my tears. 


I've read numerous reports on Norrin where someone has noted on his inability to relate.  But in my moment of sadness, he related to me - in the sweetest and most appropriate way.  I knew that I could not be afraid, because I could not fail him.  And it was a comfort to know that as much as I am willing to fight for him and protect him - Norrin was willing to do the same for me.

from the archives of AutismWonderland (10/10/10) 

It's the last weekend before kindergarten begins.  And nervous is a complete understatement.  I am scared. Worried.  Anxious.  Excited.  I've been feeling all of these things all summer long but I will be honest.  I haven't looked at his IEP since our last meeting in June.  After that meeting, I put it away and took a time out from special needs.  And since The Boy's last day of SEIT/related services, I haven't done anything truly constructive with him.  

At 2 years old. A few weeks after the 2 year shots.  Ryan started taking steps backwards in communication and development.  I took him to the Doctor because I knew something wasn’t right. They discounted my concerns by saying “all children develop differently, give him time”…  My husband was in complete denial. that our boy could possibly be handicapped.

I could stand behind Ryan and call his name(even loudly), without any response, at all.  For a while we all thought it could be a hearing problem, but many tests ruled that out. Then I started observing him, going into his own world and entertaining himself.  Completely tuning out the rest of us.  I even use to joke that he was talking to angels sometimes because he pretended to talk to people (we couldn’t see) and laugh.

There were also certain sounds Ryan would make.  Especially when he was excited (kind of like a shriek). The few words he did say, before age 2 had completely gone and he was using inflection but no formed words. Sometimes when I talked. He would want to touch my throat to feel the vibrations. It seemed to really soothe him.  I had a hard time keeping clothes on him as well, because waist bands and tags drove him nuts!  He also started eating sand and dirt at the playground and the beaches. too…

On Halloween. Just before Ryan’s 3rd birthday.  I was on the porch, when a boy came and sat on my lap and wanted to help me give candy away.  I could tell he was a special child, but to my surprise,  he made noises just like Ryan. This was kind of a shock to me! (I never heard any other child act or sound like him before!)  soon I saw A man approaching me.  He  looked very concerned but happy.  He said his son never interacted with people like this before and that he was Autistic!  That was the day I knew, for sure, my son had Autism.  I was happy I could finally put a name to this, but a bit sad knowing Ryan’s road in life, would not be an easy one.

That next week I took him to the Doctor and demanded that tests be run. I finally got through to his pediatrician, that his development was still, not right.  Then I also mentioned that I had met a child who appeared to be, just like my Ryan and he had Autism!  Referrals started flying to have him completely tested! His first diagnosis was PDD  (pervasive developmental disorder). It wasn’t till the first school meeting that the word “Autism” was used!  I walked out of the meeting.  broke down and just cried.  I had known all this time, but hearing others say it. Finally Made it real!

That My Son would never have a “Normal Life”, like everyone else...

Looking back now! (which has been 15 years)  I can tell you that I think “Normal” is way overrated!  Ryan has such an amazing heart and personality!  He touches so many lives, on a daily basis!  We have even started calling him the family barometer, because He feels everyone’s emotions around him. This young man is gifted, in so many ways, We have yet to learn!

Forget about Normal!…..I am very proud to say, that Ryan, is a priceless Original!!!.....

My son Ryan has had many communication difficulties in the past.  I have learned he can react quicker and with clearer thought, to "Yes or No" questions. Really,better than any other forms of questions.  I know some kids may not be at this level,  but I often see my son struggle with expressing himself.  I have tried many forms of communication and this was the quickest, to make him talk.  He is more advanced now, but during the times when he has been very ill or agitated.  It seemed a lot harder for him, to express many words.  I had to make it simpler.

We were all taught.  In the early stages of communication, to have them use "I want..." ,to express their needs. I  just needed quicker responses for illness questions.  Ones docs could pic up on, to hear for themselves, how Ryan was feeling. This is not an answer!  Just a stepping stone that has helped me to communicate better with my son. He is far more advanced in speech, now. Yet in extreme pain and agitation.  "Yes or No" has been a very helpful tool.  Even Now!

I jotted down some short steps that helped me to build on Ryan's speech and communication:

1.  Starting them to understand Yes or No...Example:  Are you hungry?  Do you like ice cream?  going to the museum? Things you know they love, that are easy answers.  (Yes or No?)  Teaching them the concept.

2. Simple reinforcement! Ask Yes or No's, with any task...The more you use. The better!  Example:  You really like Ice cream! Right?  Going to the Zoo? ("Yes or no?")  If they don't respond.  Prompt them to repeat the correct answer. "yes or No?".  Give notice that you are proud that they responded with Positive reinforcement!

3. If  they don't feel well...  Tell them to point to, where it hurts! When they point, give it a name! ie, head.  Then ask does it hurt?  ("Yes or no?")... To pinpoint pain or sickness. You may have to rule out many things before getting to an answer. Once they begin to catch on, to these questions.  Hopefully,  you will get quicker responses.

4. When they answer Yes or No's, consistently.  Add more expressive speech...  Example: Are you hungry?  "Yes"" I am Hungry! ".  Ryan now says this without prompting, to let me know how he feels!  he also expresses things that hurt him.  ( His TT!  i use this term with ry because in public it wouldn't sound proper for him to be telling me, his penis hurts.)  ((Please if anyone has a better answer than TT.  Please share your knowledge!))

Again this was only a tool I used.  As a mom.  To assist my son, in communicating and expressing his wants, needs and feelings.  To help him to find more words . In his own mind. For more spontaneous language.

I would truly appreciate any feedback and If anyone has other helpful, tools to share.  God Bless you all!   ,Laura Lange

As I lay in his bed last night/early this morning, with one eye open I heard him playing.  Pretend playing, using his imagination, creating a dialogue.  And then he's standing beside me, singing "If you're happy and you know it..." He sang the whole song.  Clapping his hands.  Stomping his feet.  Saying "hooray."

And even at 4 am, in my sleep deprived state, I appreciate it. 

(published on 8/ 9/2011 http://www.autismwonderland.com)

HI EVERYONE,   MY SON RYAN IS 18. HE AS AUTISM WITH SLIGHT MR.   LAST YEAR I WAS DIVORCED AND NOW WE ARE ON OUR OWN.  YEARS BEFORE WE TALKED ABOUT, MY DREAM, TO START A RANCH/ HOME/LIFE SKILLS/ WORKPLACE (PECAN GROVE) FOR ADULT HANDICAPPED CHILDREN.  ONE WHERE RYAN COULD LIVE OUT HIS DAYS, DOING THE THINGS HE LOVES, EVEN WHEN I AM GONE.   A PECAN GROVE SEEMED THE BEST.  CHILDREN COULD COME, WITH ASSISTANCE, TO  PICK / CLEAN / AND PACKAGE PECANS(EASY LEARNING TASKS) AND SELL TO MAKE THE RANCH PROFITABLE.  I WANT A LIVING GARDEN WITH WEB CAMS SO THAT SCHOOLS COULD HAVE FIELD TRIPS AND PLANT SMALL SECTIONS. THEN GO BACK TO SCHOOL AND WATCH THE PROGRESS OF THE GARDEN AT ANYTIME.  TEACHING THEM VEGGIES DON'T JUST COME FROM H.E.B.  AND POSSIBLY GET THEM TO EAT MORE OF THEM!  DR BLANKSON EVEN SUGGESTED  ALSO A PETTING AREA FOR  ANIMALS. WE COULD ALSO EVENTUALLY,  HAVE SMALL COTTAGES.  FOR FAMILIES TO HAVE GET-AWAYS.  SOMEONE TOLD ME IN THE CITY WE ARE LIMITED,  BUT IN THE COUNTRY, THE SKY IS THE LIMIT! I KNOW THIS IS A BIG DREAM BUT IT IS DOABLE.

I WANT TO TEACH MY SON SOMETHING HE LOVES. PLUS THE  LIFE SKILLS(DAILY LIVING) I KNOW HE NEEDS AND PROVIDE A PLACE FOR MANY OTHERS, TO THRIVE AND FLOURISH.      WHEN TALKING TO DR BLANKSON HE ENCOURAGED ME TO PUT THIS OUT HERE!  I HAVE DEDICATED  MY LIFE FOR MY SON AND HOPEFULLY THIS CAN HELP MANY OTHERS!    I JUST REALLY DON'T KNOW WHERE TO START OR WHO TO TALK TO!   ANY IDEAS OR HELP WOULD BE ANSWERED PRAYERS.   THANKS!  ps I NEVER BLOGGED BEFORE SO PLEASE BARE WITH ME!

(previously posted on July 25, 2011 on AutismWonderland - http://www.autismwonderland.com/2011/07/three-words-i-dont-often-hear.html)

I don't hear the words "I love you" from The Boy very often.  I prompt him to say many things.  But those three words?  Never.  I don't want them to be forced, I don't want them to sound rote.  I want him to say it when he means it. 

Every night when putting him to bed, after kissing him goodnight, after reading him a story and kissing him goodnight again, I tell The Boy that I love him.  I usually repeat it.  Holding his face with both hands so that he can see my face and hopefully look me in the eye. Sometimes he repeats it.  Sometimes he doesn't.  Sometimes he gives me a kiss and asks me to "go away" because he wants "Daddy to read another story." Sometimes he skips the kiss. 

I can count the times since he's started really talking in the last two years that he's said "I love you" spontaneously. 

Last winter, at around 6 am on a weekday morning.  I was calling out sick for work because I had been up with him all night nursing his fever.  He was in our bed, barely awake, his cheeks flushed red.  I pressed a cold washcloth on his forehead.  I smiled at him.  At how calm and still he was.  A small part of me likes when he's sick.  Every mother likes to be needed.  And I savor the moments when The Boy is calm and still and lets me stroke his hair or sits beside me while I read a story.  He pushed the washcloth away.  His eyes were starting to close and right before he fell asleep, he whispered "I love you."

Three weeks ago, Sunday I was sitting (w-sitting actually) on The Boy's bed reading a story. The Boy dropped a toy behind the bed and wanted me to get it.  Major klutz that I am, scooted back (still in w-sitting position) to get up.  Instead I fell backward on the floor, flat on my backside.  I screamed out in pain and The Husband hurried in to help me up.  The Boy, seeing me pain, started to cry.  With real tears and I had to get up to console him and reassure him I was okay.  He put his arms around me, buried his wet face in my neck and sobbed "I love you."

This morning, The Boy and I are standing waiting for the school bus.  And he's having a hard time standing still.  I'm trying to make conversation.  But The Boy is busy watching the pidgeons.  He suddenly throws his arms around me and asks for a hug.  I gave him a squeeze.  And then he said, "I love you Mama."  So sweetly and so appropriately as if he just made the connection between the action and verbal expression.  Maybe he did.  I picked up The Boy (no easy task since he's about 52 lbs) and squeezed him again.  Kissed him on his cheeks about twenty times before putting him back down.  I tell him I love him too.

As the bus pulled up, I kissed him again, handed him his bookbag and said goodbye.  He got on the bus without looking back and without saying goodbye. 

So many parents take those three words for granted.  Some parents, wrapped up in their own chaotic day to day, ignore these declarations of love.  Me? I have to cherish each and every time because I'll never know when, where or why I'll hear them next.