Connections

When you're a parent of someone on the Autism Spectrum or a person with special needs, seeing connections may be difficult.  Especially since Autism is a social/communication disorder.  The definition of connections is "a relationship in which a person, thing, or idea is linked or associated with something else."  For so many years I longed for a connection with my daughter, a sign that we understood each other and what was going on around us.  I longed for a conversation that we both participated in.

Slowly with therapy, tiny connections began to occur.  Sometimes only a flicker, caught in a spark in her eye or a smile on her face.  Those connections made my heart soar with excitement and gave me the hope I needed to continue.

Bree doesn't watch much television or movies.  Its a sensory thing and a comprehension thing, it causes her discomfort and frustration and she usually avoids it.  When she does sit down with the family for a movie, it use to end badly.  She would ask constant questions, trying to understand the dialogue and not being able to follow the story line.  It was frustrating for her and for all of us.

Very gradually she began asking less questions.  Bree worries a lot and so she becomes anxious when she fears a story will end in a way she doesn't want it to.  Yesterday, we attended a movie with a group of friends and when it was over she announced "If anyone asks, this is my new favorite movie (The Intern)!"  There were a few questions throughout, but hardly any and not at all distracting or frustrating.  When I saw the joy on her face and the understanding she felt, I had to step back and embrace the moment.  She talked freely about the story line and with understanding and passion.

How many times do we read a book or watch a TV show or movie and immediately connect with people.  Basically, "Water cooler talk!"  We have been connecting with co-workers, family and friends about something we saw on TV or at the movie theater for as long as I can remember. That is just it, we have been connecting with people, all of our lives.  As I reflect back on the moment, it wasn't just the movie my daughter connected with, it was friendships!  It was life!  And, boy what a moment for all of us!! There were connections every where, connections with all present.  From the enjoyment of the movie to the enjoyment of each others company to the enjoyment of our tacos at the end of the night.  I saw the connection with Bree's friend Josh. Movies are also hard for him, but he fought through it and remained a contributing participant in the evening.  We were doing something that others take for granted...we were connecting!  Love these three!

The BIG Question

The BIG question

I am always asked one questions.....how did they not know?   I actually hate that question, I know it's a question people have on their minds, but I still hate it.  I want to scream "I DON'T KNOW!!"  I would not expect anyone to understand the stress on the inside of me it causes, or the questions in my mind on how I, as his mom, did not know.  I have reasons...I think they are valid reasons.

1. 10 years ago, Josh was 17.  20 years ago, he was 7.  Do you even remember the words Autism/Aspergers in anyone's vocabulary back then? Unless it was obvious classic autism, who was diagnosed? I was not a savvy parent back then.  I was a young mom with friends who did not have kids yet...heck, they weren't even married.  The terms, ADD, oppositional disorder, brat, strong-willed child, uncontrollable, and undisciplined were the words I often heard on a day to day basis. Not just from schools, churches, playground, but from "friends" and "relatives" as well.  I didn't know what was wrong.  When he was just with me, he was an angel.

2.  The pediatrician never spent enough time with Josh to determine what issues he had.  Sure, we saw him for reasons such as "rashes", colds, immunizations, and notes from the teacher.  All I was ever told to do was ..fill out a piece of paper, and hey - have the teacher fill one out too.  It was never mentioned by the doctor to take him to a psych or a specialist.  Just to give him certain meds, which I stated often, didn't work.  Was it his fault??? maybe.......I took him there often enough for him to warrant a referral to a psych.  Question is...would I have gone?  I don't know.  I might not have taken him to a psych, but I might have taken him to a specialist.  Which is why I say, don't trust your pediatrician if you think something more might be going on with your kid.  They just aren't trained.....maybe some new ones are trained now.  I'd still suggest to make an appointment with a doctor or psychiatrist that is knowledgeable in the Autism Spectrum.  I would ask, "are you familiar with Autism Spectrum Disorders (ASD)?"

3.  I don't remember anyone in the school community saying anything other to me than, "have your doctor check him out".  That was the clue.  People....teachers are legally bound not to say much!! when you hear those words...IT'S A CLUE!!! It means.....we really think there are some things going on with your child, we care about your child, we want you to take him to someone to help him.  The regular pediatrician does not cut it.  Go to someone else.  There.....I broke the code for you!! Do not blame the teachers, gesshhhhh....their hands are tied.  Assume they want the best for you child!! Mostly likely, they really love your kid too!! 
If I look through Josh's old IEP's....ASD is all through the documents through descriptive words. 

4.  Josh did not have any developmental delays, thus the Asperger's diagnosis.  He was talking by two - singing the Jungle Book song word for word by 2.5 years old.  Heck, I thought the kid was a genius!!!  He crawled on time, he walked on time.  I did not notice any social issues because he was an only child.  I did not have any nieces or nephews.  He was happy.  He was the prince of the world.  I was not a teacher at that time.  I had not taken any childhood development classes, but you can be assured I read The Strong Willed Child!! LOL  I can't even count how many people gave me that book!!  It's freaking insulting!!  When he was in the teenage years, I just thought he was being an annoying teenager.  Trust me when I say the teen years were the toughest!!  I did not understand why he could not "get it together". There was a lot of yelling in those days.  Now I know why he couldn't "get it together".  A good thing that came out of not knowing, is Josh's ability to be flexible.  If he could, he'd like a nice structured day, but because of his mom - he has learned to just go with the flow.  *go with the flow means: we just decide what we are going to do minute by minute, we will do it when we get a chance, there is not a time frame*  Josh would prefer a time. 

If you see me, ask me!!  I don't mind answering questions, but some of them I just don't know the answers!!  When people ask me "why did it take so long to get diagnosed?"  I usually just talk about how Autism really wasn't officially on the scene yet.  Oh it was there physically, but I think a lot of kids were given a really bad rap because of uninformed Doctors. The public is now finding out more and more about ASD.  It's everywhere!! Why? I really don't know, I might have my theories, but I'm not getting into that.  ha!!  

I am adding the video to the song I Wanna Be Like You from the Jungle Book. Once you get to through the video at about 3:00, you will see the nonsense words between Balou and the Monkey King---this was his favorite part to sing word for word!!  I am hoping you will agree with me and conclude that my two and a half year old Josh is a genius

Reminders

This past weekend, Josh and I went to my....ummmm....30 year high school reunion. It was fun to see all those great faces!!  Josh kept to himself, but he handled himself well.  He met a lot of people whom he's never met tell him things that, I'm sure, made him wonder "how the heck do they know what I do?"   Then I spent a couple days with my high school best friend.  I haven't seen her in probably 20 years!! The beautiful part was it was as if no time had passed!! Our lives have become pretty parallel oddly enough.  Our special needs boys are only a month apart in age! They are both very involved with Special Olympics and love golf!  They rode golf carts, swam, played card games, ate, watched a little TV, played a video game, and made s'mores together.  It was a highlight of the trip to see our two boys enjoying each other! 

My friend reminded me of a few things  I had forgotten over the years.  She told me she thinks often of a few events that happened during her wedding in regards to Josh. She wondered if some of the behaviors might have been a clue to his autism.  He was three when she got married, and, of course I was a bridesmaid.  (the man she married continues to be absolutely fabulous btw) 

Because I stood up in her wedding, someone was assigned to watch Josh during that time. She reminded me that he screamed and wanted nothing to do with that person.  I'm sure Aunt Betty tried her best to sooth an unhappy toddler with tricks we all use to distract and calm.  Josh would have none of it.  He pitched such a fit, he was taken out of the church.  Poor kid.  All he wanted was his mama.  She also reminded me of the bird seed we were to throw on her and her husband as they left for the reception.  She said he would not throw it, but kept it tight in his chubby little hand.  All the coaxing in the world would not make him throw it.  He probably did not understand why we would throw seeds on people - after all, he was often told not to throw sand!!!  Once the happy couple were in the limo, Josh went over to the open door and threw the seeds on them!! LOL.  I laugh now, and so does she!! She said she was finding seeds in her hair for a week!  I can imagine myself back then giving him a strong lecture on why we do not throw seeds at people.  Yep, you heard that correctly!  I had been telling him "throw the seeds Josh, throw the seeds"  then 10 min later I'm saying "we do not throw seeds at people!".  Oh boy, the confusion!  

I felt terrible, because I don't remember a whole lot about that day.  I've been thinking a lot about why I don't remember much.  I can remember a lot of things, but that day has escaped me. Finally, it hit me why I might not remember much.  I was probably so consumed with keeping Josh's behavior under control that I forgot to enjoy my best friend's wedding. That fact in itself brings tears to my eyes.  Maybe those were clues to his pending diagnosis.  I now know being so consumed by a child's behavior is not normal.  I now know MOST kids can be distracted when mom is busy - he could still "see" me.  I now know that the throwing of bird seed at the most inappropriate time is a toddler behavior...but the way he did it is not. "hey, that's not appropriate" comes to mind.  :) lol  

I do remember a few things about that wonderful day, but the one that sticks out is how tightly Josh held on to me.  I had to hold him most of the day.  He had to be as close as possible, squeezing me continually.  I do remember during picture time, he cried unless he was holding on to me.  I love this picture of him! He looks so happy.  He's happy because he's finally next to his mama. I would imagine for him, it was probably a pretty traumatic day.  I'm not sure if this post has anything has to do with autism, but it might.......

 

Lost in a Crowd, Just Looking For A Friend

There are so many difficult moments in Autism.  Just as every child is different, every family experiences different struggles.  I can't talk for anyone other than my own family, but our higher functioning daughter seems to get lost in the crowd.  And, crowds...ugh..not good!

Hopefully, others are also mainstreamed with accommodations and possibly an aide.  But, from our experience, she seemed to stagger through life, bumping back and forth between the regular ed and special ed worlds. That made it difficult for her to establish herself. She never was in one place long enough to feel comfortable. Don't get me wrong, I highly encourage mainstreaming with the right accommodations.  Keeping her challenged truly helped, but it also made her aware that she was different. She felt alone, A LOT.

The biggest hurdle for our daughter has been friendships/relationships.  She tends to make them easily, but most people don't understand her behavior and move on quickly.  Leaving her feeling like a failure and lonely again and again. This is a repetitive theme I hear among the Autism and Special Needs communities.  It's work to be a friend to anyone, but what I have witnessed is, most people don't want to do the work when it comes to special needs. They may enter the relationship because it feels good, or maybe they just didn't realize what was needed. 

Don't let this discourage you, keep helping your child find friends.  Like Cheryl and I, you may need to start your own "Friends Finding Friends" group.  When you find people who all want the same thing (a friend) it is a lot easier.  You may have to stay involved and help with the communication issues and new ideas.  But, I promise the more you do it, the rewards are worth it.  Seeing your child/young adult look forward to going places and seeing friends will fill your heart with so much joy.  They will grow and you may even get to take a more passive role.  Don't force friendships, if it isn't working, move on.  One thing I can promise is you are not alone.  Your child is not the only one feeling different, feeling lonely or wanting a friend.  You just need to find that other person who wants what you want.  Guess what there is a lot of us moms out there, just trying to help our kids.

Help your child through the crowd, their friend will be waiting for them!

Rashes and Squares on the Blacktop - by cheryl, mother of boy

My son was not diagnosed with High Functioning Autism (Aspergers) until he was 19 years old!!  Yep, that's right, 19.  During the school years previous to this enlightenment it was a wild ride.  He's always been a loving cuddlier, wanting to be as close to mama as possible. (sorry cold mother theory).  He is now 27, no longer a cuddlier, but (don't tell him I said so) still a mama's boy. He is quiet and compliant.  He was not always quiet and compliant....

Let's go back to 2nd through 3rd grade...the rash years!  It was said by his pediatrician that Josh has eczema.  The constant scratching on his legs was because of dry skin.  He would scratch his legs raw.  No amount of itch cream would help.  Since the doctor said "don't worry, it's just eczema" I believed him, he was the professional right?  Every week I would get a call from the school, usually a Thursday, asking me to get Josh from school because he has an unidentified rash and would not stop scratching. Turns out Thursday was PE day.  After a school year of getting mad at the nurse, constant Dr. visits, many tubes of itch cream, I had enough.  Yelling ensued. Crying erupted.  More cream was applied.  I look back now and I realize my poor baby was very anxious.  He was in a new school, bigger class, and was getting in trouble quite a bit for being out of his seat.  ANXIETY!!!  How could I have known? The Dr. told me eczema!!  Diagnoses averted.....

Recess was rough.  Soon he was seeing a behaviorist, she was wonderful with him.  His reward was ice cream on Fridays - if he followed his behavior plan.  He did pretty well most of the time.  At recess, which I think may have contributed to his success on the playground, he was required to stay in a square on the blacktop.  The behaviorist would draw the square with chalk and Josh was able to choose the color. Lucky dog!!  He was also allowed to choose one friend to play in the box with him.  What kid would like to play in a box at recess?????? yep, that's right.. NONE!!  Josh played with a ball by himself in a box on the playground at recess. I'm tearing up thinking about it - so sad right?  Luckily that did not last long, because they came up with the brilliant idea of "if a friend played with him in the square he/she could come with Josh for ice cream on Fridays"  Josh had a plethora of friends!!!  Until the behaviorist didn't want to buy ice cream anymore............................. 

Who wouldn't want to play with this kid?? I mean really? Look at him?  He's adorable!! 

Invisible Disability -- story by Mary Ellen, mother of girl

In having an invisible disability, we learned early on that people form opinions without facts.  Taking a 3-year-old to Walmart and having them freak out...people automatically think "Spoiled Brat."  Then there is that adult version of fight or flight, when you have no idea why your child is screaming and nothing you do can console them, (The before diagnosis stage.) You feel circles being seared into your back from the death glares being shot in your direction.  You try to keep your cool, as you see your other children frown, knowing the trip to the store is now over.  Once again they won't get the new pair of shoes they've been waiting for. You hold back the tears as you wonder when you became a bad parent and what is it you are doing wrong.

Then it happens!  You're trying to make a quick exit out of the store,  Your screaming child has sounded the alarm and now two lines of people form.  They line up on both sides of you pointing fingers and talk about your parenting fail.  (Okay, I added that in for a little dramatic reading.) Although, you do feel like the few minutes of your escape is happening in slow motion.  The snickers and gasps ring in your ears.  And then that one person who thinks they have all the answers in life, steps in front of you.  The person who has trophies and plaques mounted around the house, reading "World's Greatest Mother" or "Best Dad."  Their words hit you like a brick and you rock backwards on your heels.  They give you some advice on controlling your child and soon you feel as though your heart may explode or you will sob and show everyone how unstable you are.

Unfortunately, this happens a lot.  People think they know more than we do.  I'll admit in the beginning I had no clue why my daughter was so upset.  But, I had two other well behaved children and this had nothing to do with my child wanting and not getting something.  Sadly, this never ends.  We tried wearing t-shirts, that read "Autism - Would you know it if you saw it?"  I don't think I should have to make my child wear a t-shirt just so people aren't rude.  It's the curse of having an invisible disability.  You are expected to act a certain way and when you don't, you are outed as a brat, a weirdo, rude and more. All I can try to do is educate and spread awareness.  Just know you are never alone in your struggles.

In the Beginning -- story by Mary Ellen, mother of girl

Our journey began in July, 1997.  We welcomed our third child Breanna into the world.  Bree had a head full of curly brown hair and eyes as bright as diamonds.  Gradually, life began to change and become more challenged and confusing.  There were many sleepless nights.  Meltdowns galore and developmental delays.  Sitting up wasn't happening, then no crawling, speech was very limited and walking over a year delayed.  Although we noticed the delays, our pediatrician chose the wait and see approach.

By age 3, speech was repetitive and consisted mainly of Jargon - no expressive language.  Taking her out in pubic was non-existent due to the meltdowns experienced due to outside stimuli.  Our life as a family was tense and strained. We needed help, but didn't know where to turn.  Music was her only relief from the extremely upsetting world she lived in.

After a failed speech screening and play based evaluation,  our school district recommended Early Childhood Education.  She began at age 3 1/2 receiving speech and occupational therapy. With intense therapy, we started to see some improvement in communication and behavior.

At age 5 she received an Autism diagnosis from the University of Chicago and at age 6 began her elementary school years mainstreamed with a one-on-one aide.  For the next 9 years, she continued to be mainstreamed with a one-on-one aide.  She also began receiving therapy to deal with anxiety and OCD.  Our journey only just begun....