Who Really Has the Special Needs?

My question actually stems from a "pet peeve" (Merriam-Webster.com says - pet peeve - noun:  something that annoys or bothers a person very much). I have a problem with people who complain about people with "special needs".

During the transition to the new pass at Disneyland (which I still have major reservations about - but that's for another day), I heard and read so many issues with the fact that there was even a pass - I thought I'd scream.

Many of the comments I've heard and read included:

1. What makes "them" so "special" that they should be able to cut in line?
2. No one should get any special privileges.
3. My kid has to stand in line, so should everyone else.
4. My kid doesn't need a special bus, why should I pay for that with my taxes.
5. Why do they have special parking spots, especially for someone with a wheel chair... (this on really burned me up -not that the others didn't)
6. Why do they have a handicapped plate... they don't even look like they need it.
7. Special needs just gives them an excuse to get something extra.

I could go on, but I know you get the point, and have probably heard some of these ignorant remarks too. Anyway, I finally decided to address this topic as the mother of 2 special needs kiddos on the spectrum

I, along with many other parents I imagine, would trade anyone for a day in my shoes... so to speak:

10. Getting kiddos with autism up in the morning without the possibility of a meltdown.
  9. Trying to get my boys to eat something healthy for every breakfast, lunch or dinner.
  8. I would love to not have a kiddo that is a "flight risk" / wanderer. To not need a handicap placard, that we didn't need to park close enough to the store, because of the real possibility that your kiddo could run in front of a car because (s)he "bolts".
  7. For my babes to understand that being without fear is actually a "safety risk". That the stove is hot enough to hurt you, and still put their hands near it after almost getting burned countless times.
  6. To go to an amusement park and be able to stand in a line for more than 5 minutes without having a meltdown.
  5. Not having a kiddo understand that - not everyone who approaches them has good intentions toward them.
  4. Have a kiddo on the spectrum who is constantly "stimming" (self-regulating behavior) in order to be able to cope with their situation.
  3. To get a whole night's sleep - not to be up for hours on end because your kiddo(s) simply can't sleep and are wide awake.
  2. To not need several medications just to "function" appropriately.
  1. To have an age appropriate conversation with your kiddo.

I think that those who complain about special needs, are truly the ones with special needs. They need the special education to be taught by loving people how "special" - patience, love and most of all compassion are. They need to learn that if not for the grace of GOD - they themselves would be the one who lives with someone who is special. They just might learn that everyone in GOD's great creation is SPECIAL in one way or another. No one is greater than anyone else.

From a mother's heart - I yearn for the day when acceptance, knowledge and compassion is the norm.
God Bless!

Picky or Sensitive Eater?

One problem we have had, and many other families with kiddos on the spectrum have... picky eaters. We call them picky, but I think a more appropriate term would be "sensitive" eater. There seems to be at least 2 culprits responsible for food preferences for kiddos with ASD* (autism spectrum disorder), either a problem with textures or a digestive issue.

When the boys started eating baby food, we fed them the way the doctor recommended, one food for a few days and if there were no problems, introduce another one. We did this for each food and had no problems. They were great eaters, ate virtually everything (except the pureed peaches). They did great with new foods as they got teeth and new foods were introduced. They even liked broccoli - which shocked us. Everything went along fine until Daniel regressed, then he stopped eating most of the foods he had eaten before.

After talking to the doctor and being told that many kiddos develop their "taste buds" at this age, he was probably going to be a picky eater. We made sure that the few foods he would eat were on the "healthy healthier" side, and started giving him his vitamins religiously. I started looking online since I wasn't sure if he was "just" a picky eater or there was more to it. Some kiddos are indeed picky, while others have a  reason they are "not" eating something.

I found out that there are some very real issues that affect kiddos on the spectrum and will cause them not to eat. Gastrointestinal problems are among the most common medical issues with kiddos on the spectrum. (These issues affect many children, not just those with autism). Chronic diarrhea or constipation, IBS (Irritable Bowel Syndrome),  food allergies, malabsorption issues, GERD (gastrointestinal reflux disease), casein or gluten issues. The best advice for these issues, would be to have your kiddo see a gastroenterologist. For us it is definitely a case of: "if I knew then, what I know now", we would've taken both of our boys to a gastroenterologist a lot sooner than we did.

autism and G.I. (Gastrointestinal issues) addressed here:   
http://www.autismspeaks.org/what-autism/treatment/treatment-associated-medical-conditions/gi-disorders

malabsorption issues are addressed here:     http://www.hopkinschildrens.org/Malabsorption.aspx

Another issue for kiddos on the spectrum is SPD (sensory processing disorder) and can be another cause for "pickiness" when it comes time to eat. There are 2 different oral sensitivities: hypersensitivity and hyposensitivity. Each is addressed in a separate way, and the person can be helped by an OT (occupational therapist) to determine if it is SPD. (They can also let you know if other types of SPD are present and should be addressed). It should also be noted that not only kiddos on the autism spectrum have SPD, many others have it too and may not realize it.

http://www.sensory-processing-disorder.com/oral-sensitivities.html

From a mother's heart - if your have a kiddo with autism, or even a stereotypical kiddo, that seems "picky" - please don't force them to eat until you know why they aren't eating. It could be more than pickiness entirely.
God Bless!

No Apologies...

When we go out to a store or other places, I find myself saying  "please excuse" my son(s) for something socially unacceptable they've done. Then I will go a step further and explain that they have autism. Many people will say something like: no apology needed or something to that effect. Some people have asked me how I can apologize for them having autism.

#1 - I am not apologizing, I'm asking for the behavior to be excused - "to explain in hope of being forgiven or understood"  (per http://www.thefreedictionary.com/excused).  #2 - I see it as an opportunity to inform or communicate with someone about the disorder. For example, if a woman (or a man with longer hair) is crouched down looking at something on a bottom shelf in the store, Daniel will go up and start playing with their hair. So, I politely explain: "please excuse him, he has autism and loves hair." I have not had any bad experience (to date) with explaining it this way. Most people will say that it isn't a problem.

There are other times that the boys will see something on a shelf that catches their interest and will "charge" for that item. If someone is standing in front of the item, they will push through to get to it. Then I will again say "please excuse" my son(s) - he/they have no cause of personal boundaries. He/they have autism, and again - this generally opens the door for communication. Even if it's a brief conversation, I know I've planted seeds, seeds that I hope will grow into either acceptance or understanding some day.

For those less patient, more judgmental or vocal about the way my kiddos act, for those who give that look (if you have kiddos on the spectrum - you know the look) if the boys have a meltdown. I have made up cards to hand the person.

More and more when something happens and I mention autism, the door is opened and someone will share with me that they have a child, a friend or family member that has ASD (autistic spectrum disorder). While it's great to have more understanding and more conversations with others about autism. It breaks my heart to know (and verify) the reality that more and more kiddos are being diagnosed with ASD.

Since you can rarely tell that someone has a spectrum disorder, people generally don't understand what autism is until you explain it. Unfortunately sometimes it takes an "outbreak" of something before people will really pay attention to it. No one bats an eye at anything anymore unless it affects them. (Probably not a completely true statement, but it expresses what I see a lot.)

From a mother's heart - Don't be afraid to explain that your kiddo has ASD to anyone. If your little one does something that isn't "socially acceptable" ask that they "excuse" the behavior, never apologize.
God Bless!

Capture the Essence

How many times have you tried to get someone's picture that doesn't want it taken? It seems like half the people I try to take a picture of say please don't, for one reason or another. "I don't take good pictures..."; "I haven't brushed my hair..."; etc. There are as many excuses as there are pictures. Taking pictures of my loved ones has taken on a whole new meaning now that I've gotten older. Having two beautiful boys who have ASD (autism spectrum disorder), has made me realize, there are no bad photos. A photo of your loved one is precious, it may not look "good" to them, it may not be "flattering", but it's them. It captures "the moment".

When the boys were babies, we did like many families - we took every opportunity to take pictures. We started with pictures from Kiddie Kandids. They had a great program, backdrops and wonderful photographers, and it was great for us that they had great prices then.

We started the boys on the "Milestones" plan, which meant we could get pictures taken every 3 months for the 1st year or 2 at a discount. We tried for the the first 2 years to get those pictures when we could. It turned out that we got their 1 year and 2 year photos. They didn't have any "sitting" fees, so we could get a family portrait as well, which turned out to be the "best" - since we couldn't get the boys to pose for pictures alone.

The first picture went great, or at least the first pose, great smiles and everything... then the flashbulb went off, and so did the boys. A major meltdown - of course at the time, we had know idea why they wouldn't calm down. We finally had to tell the photographer to just "snap" the picture. It turned out that for the eleven months, we couldn't get the boys used to the "flash" bulb. Therefore, we couldn't get any "professional" pictures until they turned 2, but it wasn't for the lack of trying. By the time they turned 2 and we knew something "more" was going on, and we were relatively prepared. We got a great picture by explaining to the photographer to just start snapping pictures, and we started talking to the boys (through our teeth - while smiling)  and then tickling the boys.

Then came the school pictures, I still can't believe how many photographers - after explaining the boys have autism, and they need to just snap a few pictures and pick the best (especially since they're digital now). They still "know better" and "try" to make them smile, which usually makes for a picture that's worse than it would've been had they just listened. Like they know the real trick to get the smile out, and all the other photographers just weren't as good. A "real" photographer knows that it's all about the person they are photographing, and the moment. 

Last year we were blessed to meet a mom that did photography on a professional level, she also has a son with autism and knows a thing or two about capturing the kiddo. She took some great pictures of the boys. Though they didn't have the "model - gleaming" poses and smiles, she captured them. I love photography, but unless it's a landscape or portrait on my iPhone, I can take a "picture", but only occasionally can I capture the true essence of the subject, but that's ok - I enjoy trying. I now appreciate and love pictures of people that show who they are, and the true "inside" of who they are. 

From a mother's heart - taking pictures regardless of "smiles" or "poses" will at least capture the moment. It shows who the person is at that moment. When you put all the moments (pictures) together, you start to make a beautiful puzzle that is your loved one.
God Bless!

ASD with SPD Research Project

My regular blog will post later today, or tomorrow.

This blog is to try to get more information for a research project to help learn more about kiddos with ASD (autism spectrum disorder) that are affected by SPD (sensory processing disorder).
Please consider taking part in this and hopefully more information can be learned to help out all of our kiddos.

Temple University researchers are developing a measure to evaluate how the sensory environment impacts participation in daily activities for young children with Autism Spectrum Disorders or symptoms of Autism Spectrum Disorders and their families.
We are seeking parents and caregivers who have children between the ages of 18 months to 7 years with symptoms of sensory processing disorder, Autism Spectrum Disorders or symptoms of Autism Spectrum Disorders to participate in a research study. It would require 1 ½ to 2 hours of your time to participate in an initial interview and a follow-up interview. Interviews are completed either on-line, on the phone or in person at a time and place that is convenient for you.
Your participation would help us develop a measure to better understand how to help children and families successfully participate in home and community environments. Parents and caregivers will receive a $20 gift card for participating in the study.
To participate in the study or for more information, please contact:
Dr. Beth Pfeiffer
Temple University, Department of Rehabilitation Sciences
(267) 664-0698 or bpfeiffe@temple.edu

From a mother's heart - may we all do everything we can to help get information out there (and learned about) for the future of our kiddos.
God Bless!

The Autism Cocktail(s)...

What do you think of when someone says: cocktail?

A drink in the evening before or after dinner? Dictionary.com defines it as "any of various short mixed drinks, consisting typically of gin, whiskey, rum, vodka, or brandy, with different admixtures, as vermouth, fruit juices, or flavorings, usually chilled and frequently sweetened".

For some that deals with ASD (autism spectrum disorder) the word "cocktail" takes on a completely different meaning. It's a routine that is used to help their child or loved one function throughout the day. Usually involving foods, medications, vitamins, exercise, etc. (Paraphrased) I've been talking to different people over the last few months, [parents, caregivers, a doctor (M.D.), a gastroenterologist and even OT's (occupational therapists) about this subject] and am overwhelmed by the information. I'm sure it will take a long time for me to begin to process.

When we first started looking into medication for the boys, I researched the ones they were prescribed, and frankly they scared me. Some were anti-psychotics, depressants, stimulants, etc. Then I found out that they were called an autism cocktail. Well, that was a new term for me at the time, but it helped me understand that even though some of these drugs are "labelled" one thing, many kiddos used them with great benefits. For example: a medication labelled "anti-psychotic" means... that is what the original FDA (food and drug administration) submission was for, when the drug was sent for approval. So now, I've learned to look for the benefits and problems with a drug before making any decisions about them. I no longer rely on what the drug is labelled to be used for.

As the term "autism cocktail" is being used more and more, I'm learning that it's a term used for more than just certain medications used together in concert for autistic people. it's so much more - it's used for any regimen that a person needs in order to help throughout the day. Some "cocktails" don't even use any medications.

Some OT's call them "diets", others call them "regimens", still others call them "routines". Generally the autism cocktail will include many things to help someone regulate or deal with the different issues they face. An example of different autism cocktails:

• Medications used in concert for autistic behaviors
• Holistic, organic or gluten free diets
• Vitamin regimens, supplements, probiotics
• Occupational Therapy routines

I think this is a great article on "cocktail treatments":    

http://www.ageofautism.com/2008/01/cocktail-treatm.html

One of the things I'm glad we did was to wait until they were a little older before pursuing the prescription medicines. I feel so bad for the kiddos and their parents...  I've heard some real horror stories about side-effects on children as young as 18-months using medicines that didn't work and ultimately the parents gave up on the meds completely. I hear the same story over and over with other parents of kiddos on the spectrum that they've given up. The side effects were worse than the need for the medication in the first place. Some of the side effects I heard parents talk about included: falling asleep, being overly excited, "bouncing off the walls", jitters, hearing things, talking to someone who wasn't there, etc.

As parents we have to be caregivers, nutritionists, teachers, students, dental hygienists, researchers, doctors and yes - pharmacists when necessary. The professionals can only tell us things from their perspective and expertise. It is our job to find out what works best for our babes. Sometimes one thing won't work and another won't work, but by using them together - in concert - they will. Especially for those of us who have mostly non-verbal kiddos, autism can be extremely cruel. We have no idea how our kiddos are feeling through words, we have to watch closely, monitoring their every behavior.

What if we could open some magical door that would allow our child to communicate fully? Wouldn't you be the first one in line to open it? I know I would. But since we don't, that leaves it up to us to find the next best thing. Treating our loved one's issues one at a time, and who knows, maybe we'll find something that helps our little ones communicate with us a little more today than yesterday. Maybe we can find some way to open the door to help them learn what they need to in order to teach us a new way to communicate.

Autism is an equal opportunity disorder - it doesn't care how much money you have, how "religious" you are, where you live. Autism is a type jail cell for those who have it, and a journey the family goes through, hopefully together. A journey to find the key to unlock the cell door. We just have to keep searching, never give up.

From a mother's heart - one thing all parents have in common - their kids. Having kids means beginning on a journey. One you never know where it will lead you.
God Bless!

A journey of a thousand miles begins with a single step.    - Lao-tzu (Chinese Philosopher)

Vacation 2013 (Part 4) - Transition Day... Further Explanation

After speaking with my sister in more detail, she let me know that even though her daughter (that Asperger's now autism per DSM-V) enjoyed herself at Disneyland, it was mostly because she knew we were there for a few more days after the change took affect. If we had only been there for a few days, she admitted that she probably would've been extremely stressed with only being able to go on the rides one at a time. For my niece stress can quickly turn to anxiety, which leads to ticks or stimming (self regulating behaviors). It brings out the autism-like behaviors.