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