It's Potty Time...

I always pictured potty training the same way I imagine most parents did, start potty training at some point between 18 and 24 months. After a week or two, they would be on there way to no accidents, etc. LOL! Potty training can be difficult for stereotypical kiddos, but for those on the spectrum, it's maybe a little harder. We tried to get the boys on the potty at 24, 30 and then 36 months - with Daniel it was a scream fest. No luck there. Anthony would sit on the potty at 18 months, but wouldn't use it. We did had one success over the months we tried to potty train Anthony. We tried several times over the last few years. The different potty chairs, with cars, ones that make the flushing sound, ones that play music when the kiddo goes.

We bought DVDs for them to watch and books for them to read. We tried having them watch daddy use the potty, since he's the same sex (and their hero). The most successful process we'd had: get them to sit on a potty chair in the living room (clothed). When they were comfortable with that, we would move it closer and closer to the bathroom every day. Once it was in the bathroom, we worked on having them sit on the potty in just their diaper. Once they had that down, it was time to remove the diaper. That got them on the potty and ready for business.

Once they were finally sitting on the potty chair without any grumbling, no diaper and for several minutes at a time - the toddler potty got too small. So, we went for the insert for the potty... again too small and wobbled too much. So, we found alternatives:

The first one is a travel potty seat, it folds up for travel,but the boys would rather play with it than use it. We take it with us when we go out, but the boys seem to prefer a to sit on a regular size potty seat than this one. The best item we've bought to date has to be the potty seat/regular seat combination. It replaces the regular toilet seat with a regular size seat and a smaller one (two in one seat). The smaller seat and lid won't slam down. The boys don't wobble on the potty and it fits their little tushy. We finally worked with the pull ups but with us even with rewarding for keeping them dry and using the potty (when they would go)... still: pull ups 15 - potty 1.

So, we turned to ABA (applied behavior analysis). Our provider has an intensive program. We started with Anthony this week, he's doing really well. We've had a few accidents, and had to "wait him out" a few times. (I don't think I've ever spent so much time in a bathroom). My husband and I tried to figure out why he was having accidents, when he clearly knew he had to go. We finally figured that it's because the boys work so hard all week (being told what to do), this they can control. At least that's our theory. Next week we'll start Daniel. I'll update you later on to let you know how it's going... or went. 

From a mother's heart - whether a child is autistic or not, consistency in always the key. God Bless and good luck to those in the same boat (now or in the future).

Let It Out!

There comes a time in the life of every parent when they feel they've had too much. You've changed one too many diapers on a child who should be potty trained by now; you've cleaned up the same toys for the 100th time today; "Joey's" routine was disrupted and now he won't calm down. You've started the same task 50 times already, and 3 hours later, still haven't finished... Aah!!! You want to scream, "I need a time out!" (probably something worse...). We've all felt that way at one time or another and if you have children on the spectrum, I bet you feel guilty for feeling it. Right? I know I do, or at least I did at one time. You may feel like you're the worst parent in the world. I know I start thinking about the fact that people with ASD (autism spectrum disorder)or other special needs, go along on impulse. Sometimes they can't seem to control those impulses. They may need several hundred (thousand) reminders not to do something they shouldn't. It's not (usually) disobedience, it's just the way they're wired. Then I think "what's wrong with me." The truthful answer, "nothing" - we're human and we all need a break of some kind every so often. Especially when the frustration builds up.

You can't seem to help yourself, you feel like you're going to explode if you don't find an outlet. So, now you're ready to walk out to door to get some fresh air, maybe go for a long, long, long walk. However, in most of our situations that can't happen. In most cases we can't leave our children alone or unattended for more than a few minutes at a time, not even to step on the porch for a short break. We are the primary care giver, at least until the time when your significant other (if you are lucky enough to have one) gets home. In many cases it's hard to get help with your little ones with autism. Other people want to help, but aren't prepared for the things that can arise. They don't know how to deal with an outburst; many can't tell the difference between an meltdown, episode or tantrum. It kind of scares them because, even if they've seen it happen, they have no idea of how to deal with it. Then there's the fact that, especially with a child on the spectrum, that you need develop a certain way to deal with issues. If you don't fill in your babysitter / caregiver, you are setting them up for failure. You have a specific way that you do things that the kiddos look for. The "babysitter /caregiver" may not do it the same way as the parent(s). So unless the person has spent a lot of time with the child and built a close relationship - they'll leave as soon as you come back in the door, and they'll be "busy" the next time you call for help.  So what do we do at times when we have no help, when we want to scream or cry or anything that will let it out? When there's no one we can call to help in those "stress moments" that threaten to drive us completely insane? Before you start screaming at the kiddos and acting like a mad woman person, try these techniques:

• Close your eyes and breathe. Block out any sound you can with a familiar song
• Start singing a song out of the blue - a kids song or not (this will usually entertain the kiddos and help them calm down too)
• Start a "yelling" or "scream session" - you first then try to get the kids to do it (it'll be fun relieving stress - theirs and yours) [Don't overdo - you don't want the police to show up :)  ] No words
• start coloring with your little ones
• Start dancing with your babes
• Start a "tickle" fight, pillow fight (pillows can be replace - sanity, not so much)
• Go outside with your kiddos and take a walk
• start laughing - for no reason, just laugh - it's contagious
• take the kiddos for a ride
• go outside and play with your kiddos - play like you did when you were little (insert yourself into their play)
• Get a healthy snack to share with your kiddos - something crunchy
• If it's hot, get the hose out and play with the water (clothes and shoes dry)
• If it's raining, go out and play in the rain for a few minutes (again - clothes and shoes dry)

They do help; not always, but a lot of the time. Something I read / heard years ago has always stuck with me, and I've seen that it's true: "what you suppress, your kids express". In other words, if you're feeling anxious, mad, silly or happy, the kiddos will express those feelings. They'll act your feelings out, they are extremely intuitive.

Here are a few articles which deal with stress too:

http://www.helpguide.org/mental/quick_stress_relief.htm
http://www.mayoclinic.com/health/stress-management/MY00435/DSECTION=stress-relief         and        http://www.mayoclinic.com/health/stress-management/MY00435/DSECTION=relaxation-techniques

Dealing with your stress and anxiety will help you to be a better parent / caregiver and teach your children that even you need redirection sometimes.

From a mother's heart - remember everyone gets overwhelmed, anxious or stressed. Let it out in a positive way. The difference between a good and not so good parent is how you choose to deal with it. Keep your cool, aren't your loved ones worth it (and you)!  

Autism Meds

Since summer began we've had no school, a new schedule in place and life has been well... interesting. Not in a good or bad way just plain interesting. We waited as long as possible before considering medications for our boys "issues". After realizing the negative impact their conditions placed on learning, in school and ABA, we came to the conclusion that we would have to use medications. We had tried vitamins, diet and even behavior modification... nothing was working, and their issues were getting harder to handle. For us the medications are to handle: "autism" aggression, a type of depression and ADHD. As I've researched I've found that many, many people on the spectrum are in the same boat. Many parents (same as us) don't want to use the medications. We tried diet, behavior modification, time outs, etc. -nothing else worked.

As they've gotten older, we've found the issues that distract and caused problems have only increased. We know that ABA will help them learn to handle certain issues, but not all. We also found that the medications we are using are the same ones prescribed for many kiddos with ASD (autism spectrum disorder) with good results. Not everyone with autism will benefit from the same medication, sometimes it takes a few medications before finding the right one(s).

For "autism" aggression and serious behaviors many people get very upset to find out that mostly "anti-psychotics" are used. However, like many medications the reason for a medication's "type" is based on what the trial was done for to get the medication approved. Many medications have been found to treat multiple conditions. For instance, aggression seems to be most treated by such drugs as Zyprexa, Prozac, Zoloft and Risperidone. Most people I've talked to have had good results with Risperidone for their kiddos with ASD (autism spectrum disorder).

• For depression and OCD (obsessive compulsive disorder), SSRI's (selective serotonin reuptake inhibitors) are commonly used. Prozac, Zoloft or Lustral can be used in addition to other medications or alone - depending on the need.
• For kiddos with ADD or ADHD [attention (hyperactivity) deficit disorder) also, stimulant medications are generally prescribed. I know it sounds funny, but the stimulant actually helps to calm them and redirects their focus. 
• The one disorder that most people don't realize affects 1 in 4 people with ASD: seizure disorders. These are treated with anticonvulsants like Lamictal, Topamax, or Depakote.
• There are other reason for someone on the spectrum to be treated with medication, but these seem to be the most common among them.

A good article on the different medications used for autism see the following link:

http://psychcentral.com/lib/2010/medications-for-autism/

We are very lucky to have a physician that has kept up with these medications, and so far, the first try seems to have worked for each need. We know that because these medications work today, it doesn't mean they will work tomorrow. For many kiddos, as they grow and their body chemistry changes, the need to change medication becomes a very real possibility. We have been lucky enough to see the benefits of less aggression, happier kiddos (like they were before) and more focus.

From a mother's heart - whatever it takes to help your kiddos be happy and progress, research. Don't take anything for granted. Give them what they need... and love, love, love them.
God Bless

Perspective

Living, reading and researching autism has become a major part of my life. Like most families with children on the spectrum, you get a place where you eat, breath and live autism. This alone can become so overwhelming for those in the family who are not diagnosed with ASD (autism spectrum disorder). That is one of the reasons I started this blog, to write (because I love to write) and to put something out there to maybe let others know they aren't alone. It's taught me to learn watch our boys closely to learn what they need, not what I think they need. Unlike neurotypical kiddos, our boys still aren't able to always let us know what they want or need. It really comes down to perspective, which according to the dictionary is:

[pər-ˈspek-tiv] 2. a : the interrelation in which a subject or its parts are mentally viewed <places the issues in proper perspective>; also : point of view

b : the capacity to view things in their true relations or relative importance <trying to maintain my perspective>

I SEE:                                                                                                     THEY SEE / FEEL / SMELL / TASTE

hitting the chair...rattan chair, feels rough
peeling tree trunk   different textures, shades
step to be swept   pieces of wood to play with & chew on
trash from toys round plastic thing to look, feel & taste

They have taught to look at the world in a basic, simplistic way. We've learned that once you set up a routine for them, they will thrive. We also know through the process of elimination, that even when they are non-verbal, if you really watch them and "work" with them, they will show you what they need to learn.

From a mother's heart - stand back, look at things like you did when you were little, and get a new perspective. 

"This Is Autism"

I watched this wonderful documentary called "This Is Autism", hosted by Louis Theroux (an English journalist and broadcaster). I thought it was great because it follows three families dealing with autism. A high school student, a set of fraternal twins and a younger teenager. They show different aspects of autism, and it is not sugar coated. For short segment of each story check out the link below:

http://health.discovery.com/tv-shows/psych-week/videos/this-is-autism.htm

Nicky: Autistic & Talented       Autistic Twins          Joey has an outburst/meltdown

This documentary even opened my husband"s eyes to what it's like when he's not home, and to see that others go through this as well. He works so hard to take care of us that he doesn't get much of a chance to meet others with autistic children. It gave me the idea to do something similar, give a glimpse of what we can go through.

happy                                                                 inquisitive / exploring boys


Meltdown/outburst                                     Episode                                                Tantrum

Good day doing errands                                                       Stimming - self stimulating behavior

"Social" / play time (usually parallel play)

Work time                                                                     Rest time

From a mothers heart - that's a glimpse into our world. Share your world with others too, maybe it can increase awareness.
God Bless

Cost of Autism

When I look at my babes, the last thing I think about is the cost. The cost of raising them. The cost of raising them - with autism being a major factor in their / our lives.

With the deficit rising every day (in the US) and the cost of medical insurance going up, the cost to treat autism has gone through the roof, and not only because of the deficit. The programs that were put in place to "help lower" costs and help pay for treatment, are being cut all the time. I find this especially interesting considering the fact that our taxes don't go down. In the United States alone, the projected cost of raising a child with autism in their lifetime will be approximately $1.4 million dollars. If they have an intellectual disability as well, then the cost jumps to about $ 2.3 million. Those are the approximate costs in the US, and all the reports/articles I've read so far going back to 2008 state this. This is not accounting for inflation either.

These totals are for 1 child, ONE. So, what if you have two, three or more kiddos with autism in your home? I can't imagine it, (at least not more than two). I do know that without the programs we currently have in place, we couldn't afford to provide the services our boys need in order to help them grow. My hope, prayer, is that one day they will be able to function in this world and be accepted as the person they are. (Not necessarily in that order). Short of that, I pray that they will have the programs necessary to  keep them moving forward for as long as they can.

Most people wonder how it can cost more to raise an autistic child vs, a neurotypical child. Well, this amount includes the same things as raising a neurotypical child and then adding the following:

• Behavior Services (ABA) (CBT)
• OT (occupational therapy)
• Speech Therapy
• Medications
• Special Education (not covered by school)
• Physician and Outpatient costs (Primary Care, Gastroenterologist, ENT (Ear Nose Throat), Psychologist, Psychiatrist)
• Cost of a parent who needs to stay at home
• Specialized child care if parent(s) have to work
• Particular clothing (not to irritate skin)
• Vests, weighted blankets, chewing items, etc
• Etc.

I'm sure there are more things that could be added to this list, but these are the basic things that many autistic children need (that I've found out about so far). This is just the cost per child in the US. I imagine the cost to be comparable in many other countries (noting differences in the cost of living). Even if there is national public health care, the citizens still pay for it through their taxes, so it isn't free. From what I've found so far Europe, the U.K., Scandinavian countries, and China have developed programs to identify and treat autism. Data is still not known in many remote locations, though organizations like Autism Speaks, colleges, etc. are working to find out and help develop programs.

Autism Prevalence around the World (2000-2008)

    

http://www.autismspeaks.org/science/science-news/autism%E2%80%99s-costs-nation-reach-137-billion-year          (the map above is on this report)
http://money.cnn.com/2012/04/02/pf/autism/index.htm  

With the numbers of people, mostly children, being diagnosed with an ASD (autism spectrum disorder) growing, we must find a way to be able to address people on the spectrum. We need to find a way to get autism addressed everywhere we can. I think too many children are being left on the sidelines when there are ways to help treat them. I've watched countless videos showing children becoming integrated into society. Becoming aware enough to work, live alone or with others in group homes, and even drive. Anything is possible for our kiddos if we can just get them the help they need. Or at the very least teaching families how to work with there kiddos and get results.

I am not foolish enough to believe that all children will become fully able to deal in society as a whole. But my hope is that all children with autism will some day be accepted and embraced by society. This way, I believe, they will truly have the best chances of a successful future.

From a mother's heart - I realize that the cost is important, but we will all find a way to raise our kiddos the best way we can. They will always be worth whatever it is we can do for them. Right? Right!
God Bless <3