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!!