The elevator to success is out of order. You'll have to use the step at a time. ~Joe Girard

Spreading Awareness

My purpose in writing this blog is to spread awareness and provide support to parents of children with and without special needs. I have one child with a Learning Disability, more specifically, a Visual Processing Disorder including Dysgraphia and another child with a disease called Eosinophilic Esophagitis, an allergic white blood cell disease that attacks the esophagus.

Friday, April 23, 2010

Learning Disabilities and Anxiety

Anxiety, as defined by Mr. Webster, is an abnormal and overwhelming sense of apprehension and fear often marked by physiological signs (as sweating, tension and increased pulse), by doubt concerning the reality and nature of the threat, and by self-doubt of one's capacity to cope with it.   Okay, for purposes of this post, let's simplify the definition to extreme or excessive worry that interferes with a child's ability to enjoy life or to perform some normal, everyday activities.  Did you know that research shows that children with Learning Disabilities most likely experience higher levels of anxiety than non LD kids?  Makes sense, right? 

According to the article Anxiety Among Kids with LD:  Three Clinical Psychologists Discuss Causes and Symptoms the research they have collected indicates that first signs of anxiety present themselves when these children enter kindergarten.  One of the psychologists, Roberta Goldberg, terms it "the anxiety of not being able to keep up."  The article also goes on to say that at this age most parents are not aware there is a learning disability and just feel the child isn't working hard enough.  This of course adds to the child's anxiety, who already feels as if he/she can't do something they should be able to do.  Most children are not identified LD until 2nd or 3rd grade or later (that is of course if they are identified at all :  30-50% of the population has undiagnosed learning disabilities.(Source - National Institute for Literacy)).  Also, 44% of parents who noticed their child exhibiting signs of difficulty with learning waited a year or more before acknowledging their child might have a serious problem (Source: Roper Starch Poll - Measuring Progress in a Public and Parental Understanding of Learning Disabilities). The article Anxiety Among Kids with LD tells us that before and during the identification time period, their anxiety levels can  be high.  According to these psychologists, the anxiety for the LD children is the highest in elementary school, then subsides some in junior high, and subsides even more in high school.

Monday, April 12, 2010

DisneyWorld with EE

Spring break was going to be a celebration of the end of Andrew's elemental only diet.  He was supposed to have a food added back to his diet by now and we were going to "celebrate" his success of staying on the an all liquid diet for 8 weeks (which has now been more than 3 months) by going to Disney.

Well, as you know, he didn't pass his scope, so he didn't get to add a food...but we still decided to keep our reservations and go to Disney anyway.  We discussed this decision with Andrew because we would be eating at least 1 meal a day in a restaurant, and he would have to go with us and sit at the table and drink his Splash juice box.  This is something we have not done with him since he has been on this elemental diet.  He assured us that it was okay, that he just really wanted to ride the rides anyway--"isn't that what Disney is really about?"

So off we went.  Well of course things can never be easy.  Andrew ended up sick our first day there.  I knew he either had a sinus or ear infection.  I tried calling our pediatrician, but our primary pediatrician was out for the week and the one that was available would not listen and told me we had to be seen in Disney.  Because Andrew is getting ready to start the high dose of steroids and has chronic sinus issues, I felt confident his primary would have called in a prescription, but the doctor in the office would hear nothing of it.  So then I had to find out the dose of the antibiotic pill that Andrew takes because he can not take the liquid or chewable because he becomes symptomatic while on them.  After that we had to find an Urgent Care in Disney.  Believe it or not, Disney does not employ their own physicians.  So to make a long story shorter, we spent 2 hours the next morning (the waiting time alone that evening was 3-4 hours) at Urgent Care for the doctor to tell me that my son had an ear infection, and then for me to tell him the exact medicine and dosage my son needed due to his EE.  But, since we happened to be there, I had them give him a shot of Rocefin to speed up the process so our whole trip wouldn't be miserable.  I do have to say it was interesting because while we were waiting for the shot, the doctor came back in to ask me questions about EE.  He said he had never had a patient with the disease before and wanted to learn more.  Anyway, it would have to be the child with EE to get sick!  He has not been sick once this winter since he began the elemental diet, and boom, go to Disney and right off the bat!

Thursday, April 1, 2010

Public Awareness of Children With Special Needs

As I have mentioned before I am a firm believer of support groups for parents with children with special needs.  Yesterday I had a meeting with one of my support groups for "moms with special needs children".  We have been asked to do a short presentation at a luncheon to spread awareness of children with disabilities.  Many of the people attending this luncheon will have no concept of the vast spectrum of special needs.  Many times when a person hears that a child has a special need, they may automatically think, "Oh, he must have ADHD," or one that I have heard personally, "She goes to a special class, she must be retarded."  But in truth, these can be misconceptions, and there are far more categories of special needs that affect children in our society ranging from autism to learning disabilities, from muscular dystrophy to down's syndrome.

According to the U.S. Census, there are more than 54 million Americans with disabilities in the United States--that is almost 20% of our population.  However, most of those special needs are not visible.  The child looks just like every other child.  Our support group is trying to take baby steps to spread awareness of these wonderful, special children.  We would like for people to realize that things may not always be as they seem...that the child that is "misbehaving" during the sermon at church, continually knocking on the pew despite his parents attempts to make him stop, is not being disrespectful--he has autism.  Furthermore, his parents are not lacking in parenting skills, they more than likely go above and beyond each day to be sure their child is afforded each service he needs to accommodate for his disability.  And that child who is in fourth grade, but her parents still point to the words in the hymnal to her as the congregation sings, she is not stupid, she has a visual processing disorder and actually has above average intelligence.  These two children look just like all the other children.  Sometimes, it makes their disability even harder to deal with.  It can also make life challenging for their parents.