Autism Blogs Directory: Guest post-"Everything starts with an A"

I rarely think about it any more.. but so true.  We have had Jeff and "the A word" in our lives so long I am not sure I would know what to do if we did not...Good Read


Autism Blogs Directory: Guest post-"Everything starts with an A":   "How do you make it work with children with autism in the family? I am often surprised by how differently other people live t...

It Has Been a Long Time

For those of you that have stuck around, thank you. 

Jeff on graduation day

Life has been more than crazy lately, it has been insane.  My son Jeffrey graduated from the Reddix Center in May.  He was excited for all of the attention but he is very sad about not being with his friends at the Reddix.  He has cried and begged me to let him go back to the Reddix.  (The Nellie Reddix Center in San Antonio, Texas. It is a public school for transition that students who have special needs can go until they are 22 years of age) How do you explain that he has to move on?  He doesn't understand that he is an adult.  When you ask him how old he is, he will always say he is 13. When we tell him he is 23 he keeps saying over and over that he is "just a kid". 



Jeff with his sister, Danielle, on the right
and good friend Alex on the left

He has started to settle in at the Arc of San Antonio.  Though it is not ideal, there is a great effort to make it sensory friendly and age appropriate.  This summer he started in a room that has no more than 10 adults with sensory issues.  They have computers, head phones, mats and other activities.  His teacher, Mike, is an amazing young man.  He has the patience of a saint.  The aide in his room is Rose.  Between these two people, Jeff is doing well.  But.. he still begs to go to the Reddix.  At the Reddix they had out of class activities daily.  At the Arc it is only once a month due to lack of transportation and staffing.  This has made Jeff very sad.  He loves to go on adventures. 

Jeff with his CAMP Buddy from
Summer 2012, June, who is a
pre-med student at Vanderbilt University

What we have been trying to do is to have Jeff involved in every CAMP activity possible.  CAMP (Children's Association for Maximum Potential) is a place we found when Jeff was nine years old. At first he just went one week each summer.   Now he goes each summer and each weekend that we can get him there.  He also goes to a program called TADA (Teen and Adult Day Adventure) Once a month he goes out with his CAMP buddies to a different social event (December is a dance at a local college) with CAMP teens and typical teens. 

Before I go further I want to let you know I work for CAMP.  I started in 2005, several years after my children started attending.  There are times I tell people I wish I did not work at there so I could tell them all about CAMP without sounding like a commercial.  Jeff has been going since he was nine, my daughter Danielle started at Sibling CAMP when she was eleven.  Danielle became a volunteer at fourteen and for the last three summers she has been the Camp CAMP Office Administrator.  My husband has even jumped in from time to time to help at check-in or wherever he can.

This has been a tough transition.  I am not sure we are through with it yet.  He begs me to go to the Reddix almost daily.  He also wants to go to "science school".  He loves science.. he gets that from his father.  Jim is a science teacher at an intermediate school.  Once I asked him he wanted to be a science teacher like his dad.  He thought about it for a minute and said, "No.. I want to be a substitute".  Smart Man! 

Not sure there will ever be an "end" to the transition. We have so many changes coming up in our lives, some we know about and many we do not.  What do we do about his future?  Where will we end up living?  Where will Jeff end up living?  So many changes coming that it is a little scary.  So I just hang on for the ride... not sure of the destination.

Mama Be Good: Perpetuating the Stereotype: Autism, Parenting, & Murder

Mama Be Good: Perpetuating the Stereotype: Autism, Parenting, & Murder

This brought on a great discussion on another blog.  Comments? 

Mama Be Good: Don't Do This Alone

Great article no matter if you have a child with special needs or not.

Mama Be Good: Don't Do This Alone

Six Thinks You Don't Know...

I want to thank the author of this article.   She said things that I knew..but could not express. 
Six Things You Don't Know About Special Needs Parents

Don't know what to say to your friend or family member that has a child/adult with special needs.  How about at least acknowledging their frustration and listen when they need to talk.  Sometimes that is all they need... or maybe stick around so they can take a nap!!!

Great Article About First Responders and Autism

I just saw this report through Autism Speaks.  Good information for everyone. 


Fire Rescue on the Today Show

What About Siblings

Great article at the bottom of the page

My daughter, Danielle (24) and I have had the discussion about being a sibling of a child with special needs many times.  Having been a sibling CAMPer and then a volunteer at Camp CAMP, (camp for children and adults with special needs in Center Point, Texas) she has seen so many siblings get passed over, ignored, asked to do most of the day to day tasks, and treated unfairly due to having a brother or sister with special needs. 

My husband and I made a conscious effort to work hard at not making Danielle feel like she was not as important as her brother, Jeff who is 22 and has autism.  We wanted her to feel special because she is.  We never wanted her to feel left out.  Unfortunately, it is the nature of the situation that there are times the sibling is left out and feels unappreciated. 

When we lived in Panama Jeff started showing signs of autism. Danielle was five years old and taking ballet.  During her recital Jeffrey sat on my lap and when she had danced I would put his hands together to clap and then he got the hang of it and clapped on his own.  When she was done she ran to us, in her little pink tutu and tights, "Jeffrey clapped for me, he liked my dancing." She gave him a huge hug and he smiled from ear to ear.  We realized she needed to feel connected to him and at that moment she was.

We were definately not perfect.  There were times that I was just too tired to do her "Scout" thing just after an emotional therapy session with Jeff. But usually I would get up, brush off the exhaustion and go to an event, knowing that she needed me, maybe even more that Jeff at times. There were times when my husband, at that time an Air Force Officer, would be TDY (military term, Temporary Duty or business trip to the non-military)  and I would ask too much of  her.  Ask her to buckle his seatbelt in the van or unload the dishwasher just one more time. 

I will say I have one smart daughter because often times, she adapted to this extra load.  When she was tired of doing some of the extras, she took the time to teach her brother how to do it.  Thanks to Danielle he now does his own seatbelt and yells at anyone that doesn't put one on, unloads the dishwasher and he carries the clean folded laundry to each person's bedroom.  He feeds the dogs without being asked and he cooks his own lunch for school each day.  We are still working on not over microwaving the popcorn.



The Engagement Picture
Phillip and Danielle

Danielle is getting married.  We are so excited and we love her fiance', Phillip very much.  In planning the nuptuals, Danielle and Phillip went to various venues to pick the perfect one for them.  They found their dream location and brought my husband and I to see it.  As we arrived I saw this huge porch with rocking chairs.  Then, I made a huge mistake.  "That is beautiful Danielle, and if Jeff starts getting fussy we can bring him out to rock in the rocking chairs."  I saw it in her eyes and drooping shoulders, "Mom, this is about us, not Jeff."  She was right.  At the moment of her excitement of finding the perfect place for their wedding, I was thinking of Jeff.  Then she said, "That's OK, I am used to it".  She shouldn't have to be 'used to it' but it is the nature of the situation.



We tried to do it right and here are some of the conscious efforts we made:

• We tried to involve Jeff in our daughter's activities so we could attend like any other family.
• We gave the kids things to do together that would be fun like filling up a baby pool and splashing.
• We involved Danielle in what was going on with her brother.  As she got older she was even more involved, by her own choice.  She is now his guardian if anything should happen to us.  We do not expect her to have him live in her home, but she will be the one to pick someone or the place for him to stay when the time comes that it is necessary.
• We tried with all our might to not make everything about Jeff.  We were not always successful but we tried.
• Date night!  We would take Danielle out, just her and one parent while the other parent stayed with Jeff.  Jim took her to see Phantom of the Opera and I took her to see Cats.  (I should have held out for Phantom) 

Looking back, I know we could have done better but when you are living in the moment, sometimes you are just barely making it.  I say, do the best you can, be strategic about including the entire family and make time for the siblings because they need it just as much as your child with special needs, sometimes more.

Article: Don't Forget About Me; Being a Special Needs Sibling

Respite Weekend at CAMP

Jeff as a Ninja Turtle during Summer Camp CAMP

This last weekend Jeff went to Respite Weekend at Camp CAMP.  He has been going to Camp CAMP in the summer since he was nine years old but in the last few years he has also been going to Respite Weekends.  It is one weekend a month, September through May at Camp CAMP in Center Point, Texas. (CAMP Website)

I needed this weekend.  Not that I don't love having my son around, but I have learned something through the years;  I need to miss him from time to time.  A weekend here and there, summer CAMP once a year for a week, and TADA also known as Teen and Adult Day Adventure. Usually one Saturday or Sunday a month during the Respite Season,TADA is a program through CAMP (Children's Association for Maximum Potential) that pairs up typical teens and adults with teens and young adults with developmental delays.  They gather together and go to a Spurs game (basketball for you non-sports types), Sea World or the annual trip to the Rivercenter Mall in downtown San Antonio in December. Jeff seems to love the socialization and I get a small break, knowing Jeff is having a great time.

My father, Bill Spearman with Ben Elble

This last weekend I was a little concerned.  Jeff has been having some medication issues and I was worried he might have a melt down at Respite Weekend.  I called all my CAMP friends that were going to be there, warned them about behavior issues and made sure they knew they could call me if they needed me to pick him up early.  To my amazement, Jeff did great!  He was given an experienced counselor,  (thank you Oscar) and all of his usual friends were around.  Alex, Drew and Ben Elble.  Ben is the Associate Camp Director at Camp CAMP and I call him the "Jeff Whisperer".  I don't know how, but Ben seems to be able to calm Jeff down when no one else can.  He sees Jeff as Jeff and not a challenge.. just his buddy.  Scary thing is Jeff is twice Ben's size, but "Mr. Ben" as Jeff calls him, is not daunted in the least.  He is calm and just expects good behavior.  Most of the time, Jeff complies and when he doesn't all "Mr. Ben" has to do is say "JEFF" and my son will say, "Sorry Mr. Ben" and that is the end of it. 

Danielle with her fiance' Phillip

Thanks to CAMP and "Mr. Ben" I got a great weekend with my husband and daughter and a surprise guest, my daughter's fiance, Phillip.  He lives quite a ways away and he surprised her for Valentine's Day.  It was truly a great weekend.  Not only did we have a great weekend but so did Jeff.  It was truly a guilt-free respite. 

Part 2: Hawaii

Hawaii is all that you think it will be.  It is gorgeous.  I have never seen water that blue, mountains so interesting.  Most of the Hawaiian people were friendly.  Best of all, they have one of the leading military developmental pediatricians.  This man, a civilian named Dr. Gallagher was (and I am sure still is) fabulous.

The program was set up in such a way that my son never knew he was being tested.  For four weeks, every Thursday, he would go to a play room with other children.  Various specialists were the "caregivers" and would play with them, talk to them, and just socialize with them.  The parents would meet with a social worker at that time.  After the four weeks, we finally got the official diagnosis of autism.  We weren't shocked but it was still a blow when it was official.

At the time, schools did not do "early intervention" as we see it now.  There was no ABA (applied behavior analysis).  (ABA definition on Wikipedia)  ABA was the gold standard at the time.  There was little to no internet to look up options so we could do it ourselves. To get someone from ABA to help us in Hawaii, we would have to pay for therapists to come to Hawaii, pay their lodging and food for two to three weeks while they trained us how to do ABA.  That was totally out of our means at that time.

Jeff began  pre-school on Hickam AFB.  The problem was that the teacher had no clue how to deal with a child with autism.  I am still amazed that she was confused when my son tried to tear down the class Christmas tree.. HELLO.. you put blinking lights on it. Of course, his tantrums and his trying to tear the tree down were our fault.  If we would just discipline him, if we would just..... fill in the blanks.  One time Jeff got under a table and called his teacher a bad name.. (rhymes with witch).  During the next teacher/parent meeting I stated, "Well, at least he is using his words properly".  Needless to say, that did not go over well, though out of the corner of my eye I could see the special ed specialist for the district trying to cover up her smirk. The last straw was when the aide in the classroom followed me to our car and told me that this teacher was not nice to Jeff, put him in a corner from the moment he came in to the classroom and never let him socialize.  That day my son was out of that school and by the next week the aide was fired.  We looked for the aide for weeks but never found out what happened to her.

Jeff changed schools to Pearl Harbor Kai.  I told the teacher and aide that he talked a little at home but never in public.  When I went to pick him up the first day, the aide told me that Jeff had talked to her all day.  They had looked out of the window together and he was telling her about the trees.  I cried a little because for the first time ever, someone in the school system listened to my child.  They heard what we heard.. a little boy that wanted to communicate but just couldn't do it in the conventional way.  While there they helped him get used to go to the cafeteria (sounds can be overwhelming) and how to follow a schedule and instructions. For a child with autism, that is very important.

Our neighborhood on Hickam AFB was a cul-de-sac with sixteen town houses.  In that one cul-de-sac there were three children diagnosed with autism.  There was probably at least one more undiagnosed.  I think that is a pretty high percentage.  I wonder if a study has ever been done on children with autism whose parents were military.  I think we would find a lot of autism and other developmental disabilities.  Just from my own experience, it seems like a high percentage. 

One day, I let Jeff go out to a big field with all the other children in our neighborhood. (please note: he had done this many times without incident and after this he NEVER went out without me again)  The children would play for hours out there.. Tag, Mother May I, Red Light Green Light.. and all the children were so good with Jeff, including him as much as possible.  I was going to follow Jeff out there in a minute and I knew he would be fine.  When I did go out, Jeff was no where to be found.  All of the neighborhood children went scrambling looking for Jeff, calling out to him in our area and spreading out to other cul-de-sacs.  Being on a military base I knew that for the most part he was probably safe..but still not comforting when you are looking for your child. Finally I heard my name.  "Mrs. Reily.. we found him."  Music to my ears.

Now, imagine this scene.  Five or six young children ages 5 to 8 standing around a wading pool in their bathing suits...looking down at a fully clothed boy splashing in their pool.  He was having the time of his life getting wet and splashing.  They were stunned. The children from my area were laughing and looking back.. heck even then.. it was funny!  I tried so hard not to laugh but the scene was just too.. too.. I don't know.. autistic?  So typical of many children with autism.

Though the schools were pretty good for Jeff after we left Hickam Elementary School, my daughter was losing ground quickly.  I began homeschooling her as do many that live in Hawaii.  My husband got an assignment to Great Falls, Montana and for the first time ever.. and the last, I cried when we changed assignments.  I was not ready to go.  It was an amazing assignment and I would do it all over again.

Next: Part 3, Adventures in Montana or..how we got the military to stop sending children with special needs to Montana!

Our Journey - Part 1, Panama, Central America

Lately I have been asked why my son is not further along.  Why didn't you get him in to all the best therapies that money could provide? Why didn't you do this or that..?  I have been asked nicely and asked with disgust.

This note is to you all:  Love one another.  Each family with a child with autism has their own path and their own story.  This is our story and it will have to be in many parts.. way to long for one blog posting.  Let's start with the military and moving to Panama.

My story starts with my husband being in the military.  We were on our way to Panama in Central America when we began seeing things were wrong with our son.  We took him to the doctor at Maxwell AFB in Montgomery, Alabama.  (my husband was going to Squadron Officer's School there on our way to Panama).  He said that the tubes my son had in his ears had come out and that is why he stopped talking and quit answering us.  We went on our merry way.. realizing that our son just needed his tubes put back in.

Go forward one year and Jeff had his tubes put back in his ears.  Jeff was looking out one of the many huge picture windows we had in our house at Howard AFB, Panama, all facing some portion of the jungle. He started laughing when the afternoon rain came.. and pounded on the window saying  "RAIN".  Hallelujah, our son was cured.  That was the last word we heard from him for at least a year.

We took Jeff to the military doctors in Panama but it did little good.  It was a day care provider that gave us the first hint of the issues Jeff had.  She wrote us a long note to us and the doctors talking about autism and Jeff's behaviors.  At the same time she told us Jeff was no longer welcome at the child care center.  He had not hurt anyone, he had not thrown toys.  No.. Jeff's offense was he would go to a corner and want to be alone.  Thank goodness for our housekeeper Stella who loved Jeff with all of her heart.  She called him El Presidente and my daughter was Princessita.When I could not be there, she would care for him like he was her grandson.  She would walk him to the park every day .. he would swing a stick and she would talk to him about all the things they saw on their walk.

Jeff was finally diagnosed with delays and was put in a special pre-school for children with delays. Unfortunately it was on the other side of the Bridge of Americas which crosses the Panama Canal.  I would have to put my 2.5 year old on a bus every morning.  It was heart wrenching but everyone kept telling me I had to let Jeff go.  LET GO?  Of a 2.5 year old? Thankfully Jeff loved riding the bus, but that did not help me much when the bridge was blocked by a demonstration of students.  I did not see Jeff until five that evening.  Thank goodness for a loving teacher that took care of him until my husband, Jim, could reach the school.

A year after this, my husband found out there was a great hospital in the military that was doing some amazing things with children with delays.  BUT, it was in Hawaii.  A very hard assignment to get.  We had to try.  To this day, I thank Colonel Carpenter, wherever he may be, for helping Jim get a new assignment.  With his recommendations, Jim got the job in Hawaii.  But not only that, Col. Carpenter had to go six months without a replacement since he was allowing Jim to move early.

By this time, Jim had also finished his master's degree in educational psychology.  With Jim's new degree and my degree in education, we started realizing there was more to Jef'f's issues.  He was spinning, flapping, lining up toys, making noise constantly..does this sound familiar?  If you know anything about autism it would be sending up thousands of red flags but the doctors in Panama all said.. and I quote, "We don't know what it is but it is definitely NOT autism".

If you are military you will know that to move your records must be reviewed by a psychologist. (or at least they used to).  For some reason, the pediatrician at Gorgis Army Hospital would not release Jeff's records.  If Jeff's records were not reviewed, then he could not move.  That meant my husband would have to go on to Hawaii and the rest of us would stay in Panama until the records were reviewed.  We tried to be a good military family and wait, but you know what.. there comes a time you just have to take action.  My husband went to the pediatrician's office and requested my son's records.  The doctor and the nurse both said NO.. not until they had time to look at them.  (Just so you know.. they had been hanging on to the records for about three weeks at this time, three weeks past the official request from the psychologist's office).  They knew we had a deadline and they were stalling.  We still have no idea why.

My amazing, rule following husband went in to the doctor's office when the doctor was busy.  Jim looked all over the doctor's desk. There at the top of the pile was Jeff's records.  Jim picked them up and walked out.  He could have gotten in to a lot of trouble but for some reason, nothing was ever said.  My hero!  We could now officially leave  Panama and go to Hawaii where we could get some real answers!

Next: Life in Paradise, Hawaii!