A Matter of Perspective

To say that during this vacation I have been well, tested, would be an understatement.  I have been spoiled by the boys being in school Monday through Friday. It's my "me time". I've gotten use to being able to run errands, make appointments have some quiet time with God, clean the house and some days I even get to catch up on some of my shows on the DVR. I love getting things done, that sense of accomplishment. But I love spending time with my boys more. I just find it difficult to keep them entertained when we have more than a few days off. The hardest part for me is that they have learned how to "tag team", they have figured out how to have one distract while the other does something they shouldn't be doing. (Which is a whole other topic).

Anyway, I try to insert myself into their "play" - they aren't impressed, or interested. I try to work on getting them to say the words I know they are working on in school and with ABA. I also work with them on colors: point to, what color is it, where is a color. Then there's numbers and alphabet, but you can only make that so much fun. Also, there are other things we work on too.

Then I remember that the company (Holdsambeck and Assoc., Inc.) we use for ABA works to teach kiddos in a natural setting as well as structured. So, I start trying to think of things from a different angle, I try to see things from my kiddos point of view. Now I know that I'll never be able to see it from the autistic, spectrum point of view, but I can get down on the floor and see things literally from their point of view. I'm learning that when I ask for them to point to a color, there might be a shadow or glare from the window on the item I'm asking about.

So, now I realize that there could be issues that are making it difficult for them to comply. So, I adjust to help them be able to succeed. I realize now that there are some things that I can see outside that they can't see, so I try to remember to look from their view point when I ask them a question.

To be honest, I find myself having less and less patience as the week goes on. The boys need so much in terms of input, sensory and otherwise, that I know I can't do it alone. So, the weeks that they are out of school, I do the best I can. I realize that I can not give them all that need, I am just one parent alone with the kiddos during the day and that's ok. I am not able to structure the day as well as their teachers at school can. I find myself waiting for the wonderful ABA - behavior instructors to enter my home and give the boys one aspect of their routine that will restore a little normalcy to our day.

Kudos to the single parents out there, with typical kids and to those who have kiddos with disorders. I don't know how you do it day after day without burning out. I try to always see the cup as half full, but it gets really harder the longer the boys have off school. I wonder what I'd do if I couldn't get them the programs they needed in and out of the school system. I know that I would have to find a way to cope and learn to teach them myself, but then I would most definitely have to look at everything from a different perspective every say.

Having a good support system is the best thing you can do for yourself and your family. On those days when you are feeling rung out, emotionally spent or just completely overloaded, you can talk to someone who knows (or has an idea) what you're going through. Even if it's just to blog about your day, knowing that no one may ever read, and that's ok. Sometimes just talking, reading or writing will give you a new perspective on what you've gone through. New ways of looking at the issues, thinking about the problems or how you handled a situation. You never know where you'll get inspiration that will help you see things a little differently. My husband has great way of stating the fact that we each have a different perspective, and that we can each give different input on the same topic. "If we look at a baseball we see different sides of the ball. We aren't going to see the same thing" we will each have a different perspective of it.

I try to remember that it wasn't that long ago that I was afraid we'd never be blessed with children. So, this reminds me to be thankful that we have children to test me.   :)

From a mother's heart - Sometimes a change in how we see things is in order.

The Good, the Sad and the Uninformed

It's a beautiful day in California today, the sun is shining and the temperature is just right - comfortable for short sleeves and jeans (even shorts for some). The type of day for which "spring fever" must have originated. The boys are on vacation this week and they have their mornings free. I am having a hard time focusing on anything myself, and the boys are working with their ABA instructors. There is, of course, the occasional problem with focusing, but hey, they are doing surprisingly well.

Yesterday I decided to "shake things up a bit", we went to the school's playground to let them play in a safe environment that has gates and a fence. They loved it! I loved it! My niece went with me, and she loved it! It was an awesome time.

Yesterday, after going to the playground, I decided to go to Sam's Club to grab a few things. I'm guessing that I missed something, or didn't do something I should have - I still haven't figured out what triggered it - but Anthony went over the edge. He was inconsolable for about half of the time we were there. We weren't there for very long, which was good for all of us. During the, we'll call it a meltdown, we encountered three people who openly paid attention to what was going on.  One older gentleman - old enough to be my dad (wanted to make me feel better? - because he leaned over to me and whispered "someone doesn't want to mind today, huh?") I quickly informed him that my son was is Autistic, and he quickly scooted along. Another gentleman with what I figure must've been his two daughters stared and then abruptly left the isle we were in. Then I kicked myself for not giving them my card on what was going on...

I was so busy trying to figure out what was going on with Anthony I didn't even think about the card until after the fact. Then I realized that I've generally given the card out to people whom I've heard make comments to me or whoever they're with. The third person we encountered actually went out of his way to try to engage Anthony and make him feel better. I realized then that there is a whole other type of people that I haven't figured out how to reach in regards to autism. Those who would stare and quickly retreat, the older generations (70 - 90 we'll say) that think that it's "cute" or "unacceptable behavior" and that they want to let us know they understand that "he/she just doesn't want to mind today".

So, this will be my next goal: trying to figure a way to connect to more people. To find a way to get the word that is "Autism" and it's meaning to even more people. To let them know these issues that are ASD, kiddos on the spectrum. To let them know that there is a whole other world out there that doesn't include them, until they find out about it that is. Education is key. With the number of kiddos being diagnosed with autism every day, it's only a matter of time before everyone is faced with someone on the spectrum.

Our kiddos are not (and I hate this word)... "retarded"; they are not "acting out" because they aren't getting there way (95 % of the time anyway); there are "sensitivities" we are still trying to figure out; there are "overloads" that we can't begin to understand. All these and more. So, please think about those who may have an "unruly child" the next time you see one. Ask if there's anything you can do to help. If you're not willing to do that, slightly smile and continue on your way. But don't say anything about "misbehaving", "throwing  a fit" or anything of the sort. Remember the kiddo may have autism, be on the autism spectrum, have ADD, ADHD, or any other disorder that "short circuits" the way they are able to handle the moment they're in.

From a mother's heart - I hope this blog came out right... Bottom line: try to be understanding of those around you, not judging or make unnecessary comments.

Stress, Frustration, Who? Us?

With school break fast approaching (next week for us), I am already preparing for the meltdowns that come from being out of school. Keeping the boys busy from the time they get up until their ABA (Applied Behavior Analysis) will surely be a challenge. The first thing I try to remember is that some of the same things that work with me will work with the boys. We have aggression issues with our kiddos and even though they are medicated for these we still have those outbursts of hitting, kicking and scratching at times.

You learn over time that when these behaviors occur, which things work best for each child to keep them from escalating into full blown outbursts. I've learned a lot by watching the BI's (Behavior Instructors) who work with the boys with ABA. First, trying to not give to much attention (not fully ignoring it though) - simply say firmly "no hitting" (or the unwanted behavior) and resume the activity. If they continue, have them jump, help them wiggle their arms around, movement using different body parts to get the aggression out in a more positive way. Then, again, resume the activity.

We have purchased an "indoor" jungle gym from a company called the Phunzone, you can put it together in pretty much any way you want to allow the kiddos to have something to climb on and have fun. Another purchase we've made is a mini trampoline, that the boys can jump on it inside and it's a great way to get that energy out. They will jump for hours on the trampoline - not consecutively of course but it seems like it. The trampoline is the best investment we've made for the boys to date. They are constantly on it, it seems to give them a certain "sensory input" to calm them. Whatever way you have found to defuse a situation before it becomes uncontrollable will help make your kiddos, and ultimately your life so much better.

Now, for mom and dad (aunt, uncle, cousin, and whoever else may be a caregiver for a spectrum kiddo) keeping our cool is definitely key. I heard a saying many years ago that stuck with me, "remember that what you suppress, your children express". This is true of all children, but especially ones on the spectrum. If you're not in a relatively calm state, how can you expect your "overly sensitive to sensory input" to calm down?

Everyone know the basics... breath - nice deep breaths, count to ten, remove yourself from the situation. These are great tactics, but for those of us who have kiddos with an ASD, we need a few more. I've taken a cue from my kiddos, I try to get up and move around, (when my knees let me) I can take a walk - this is a good one because it can get your kids outside, I also use the basics. If you are able to get away for a few minutes without the kiddos, do it. It may only take 5 minutes to go sit outside and breath, try to clear your mind of anything annoying. Whatever you do that helps you relax is the best way to combat frustration. I realize that I'm really not saying anything new for most people, but sometimes, we just need some ideas or a reminder.

From a mother's heart - Anyone with a special needs kiddo needs a way to de-stress - find yours.

The Measure of Intelligence...

I have a rhetorical question - mostly for educators and psychologists: Why are standardized IQ tests used with people who are on the spectrum, that clearly were not made to measure their IQ  accurately. I bring this up particularly because of my son's triennial review that will be done at both school and with our regional center (a state run agency to help people with autism and mental / intellectual delays). The school cannot do an actual IQ test, but they can use a similar type of test to show what kiddos know. The regional centers (or state agencies) however, are allowed to use an IQ test, that will inevitably show that my son has an "intellectual delay". My biggest issue is that they are going to use a standard test which has been shown to not be accurate when trying to measure the IQ of a person with an ASD.

Above are some examples of the basic tools used, not necessarily the ones that will be used by everyone. The biggest problem for us is the fact that our boys have taken several months to get comfortable with their ABA instructors and teachers at school. It has taken a long time to build a rapport with them, and they don't always work well for them, especially when they're having an off day. Yet, they are expected to show how much they know with someone they don't know, being asked to do things that they may not have worked on before. Talk about stacking the deck against the person. I have wondered if I was just being ridiculous when I thought about the IQ tests like this. This is how the tests are done - they use the same test standards for spectrum kiddos they use for typical kids. Our kiddos do not learn the same as typical kids, what makes them think they will respond like typical kids? Autistic kiddos don't learn at the same pace or with the same standards... why test them like they do.

I was so excited to see that a study has finally been done on this topic. (This is a topic that really fires me up)! This gives me hope that someday the IQ "standards" will be changed to include spectrum kiddos. The autism support network printed this article on the topic:

http://www.autismsupportnetwork.com/news/puzzle-hidden-ability-autism-212333

Like most parents (I'm sure) I look at my kiddos for every day and I see so much untapped potential, so many things that prove they are extremely smart. There is no way they would be deemed as having an intellectual disability if they were actually able to test them properly. I know many parents who feel the same way. I see it in the kiddos in my boys PALS (Playing to Learn and Socialize) class - I see it in the stores with kiddos I know have autism. It's so hard to truly asses our kiddos, because they are not always "on" (available for learning or communicating in some way). Parents usually get to see both sides, the days they are "off" and the days they are "on". The days that they "blow you away" with what they know and what they can do. Everything I've found out from researching shows us that autistic children (and adults) hear everything. They learn so much from what they see, hear and are taught directly. Because of this and the fact that most people with an ASD have a remarkable memory, you can be sure that everything they've learned is inside. It's simply a matter of "getting it out" of them.

From a mother's heart - hopefully someday everyone will the intelligence in our kiddos and they will truly get all the help they need.

The Right Decision?

Listening to others talk about their journey through the world that is autism makes me pause on a regular basis. Pause to figure out how we are doing, both individually and together as a family. In the beginning you find yourself comparing where your kiddos are to where their peers are. You learn quickly of course that you can't do that any more than you can compare one of your typical children to the next. Every journey is different, every child has different strengths and weaknesses. The PALS class my boys are in is for preschool and kindergarten, they are the oldest in the class. So it can be discouraging when some of the younger kiddos seem to be ahead of the boys. Then there are those days when they are right where you would expect them to be.

I recently heard of a little one being pulled out of a PALS class to pursue a different path, until they were maybe a little older. This child didn't seem to be progressing, but rather regressing since the beginning of the school year. I thought a lot about what I would do in that position and it made me look back to see if I remembered the boys ever going through that. At first I didn't think they had because both of our kiddos had very distinct and obvious regressions. However, with more reflection, I realized that both our boys have had (small) regressions over the last few years. Most of the time it's during school breaks - Christmas vacation, summer break, etc. Just a week off can cause the boys to lose a bit of what they've recently learned. Sometimes it seems likes it takes months to get what they've lost (colors, numbers, etc.) back.

When these things happen with other kiddos, it makes me reexamine how we are guiding our boys. Do we need to alter something in their schedule, do we need to add or get rid of something in their day? Are we doing everything we can to make sure our kiddos get everything they need in order to thrive? Are the classes and programs they are doing working for them?

On a fairly regular basis I'll find myself looking over all the progress reports from school and ABA to make sure progress is being made. We try to focus on weak spots as often as we see them, hoping we don't miss anything. We have found that we have to keep track of what they've learned (as much as possible) so that we can generalize it in a natural setting. Using the natural environment helps to  reinforce and check information learned. Like what color is the tree? What is that? <a car> , etc.

Not knowing the right direction to take has got to be one of those "hard things" we face as a parent. We can easily over think a situation, constantly trying to make sure we are making the "right" decision. If we are lucky, we find out relatively soon if we've made a mistake and can fix the problem. If we are really lucky, we will make the right decision right off the bat.

From a mother's heart - may we have all the pieces we need to get our kiddos all they need

Progress...

What a great week! Daniel, who is basically non-verbal, has had a great week in ABA (Applied Behavior Analysis). He completely shocked us many times. His verbal imitation ("say xxxx...") has been good, his expressive programs (shown a picture and asked "what is it") has been awesome. Several other verbal programs have been excellent, and many of his non verbal programs have been great too. He has been "on" since Tuesday this week. It is enough to break out the champagne... at least if we drank - so we'll settle for a can of coke.

While most school programs accept 80% accuracy to move onto the next goal, Holdsambeck & Associates, Inc. requires 100% accuracy. We know when one of the boys "masters" something (getting 5 out of 5 correct responses, 2 times in a row, back to back, with 2 different instructors), they have truly "mastered it". Even on their "off" days (when they are not "available for learning") we know they have retained what they've learned. It's just buried down inside somewhere, and it's our job to help them access it.

Anthony has also been doing very well, he actually masters a few programs every week (at least it seems like it). He is so awesome. Though I sometimes wonder if I'm giving Anthony enough praise to show him how proud I am of him. Daniel rarely does so well for so long, that when he does, everyone acknowledges it in an over the top, enthusiastic way.

Anthony on the other hand, will respond only so well for so long with praise. He doesn't appreciate the over-the-top, whoop it up type of praise. So I just wonder what he must think when Daniel receives it. At first he'll get excited for Daniel (or maybe because everyone else is excited - but I'll keep on thinking he's happy for his brother, because I believe he is), then he's so over it and you can tell by the look on his face that it's time to get back to work, or go on break.

It is such an honor to be able to be a part of helping them grow, to know that these beautiful boys have been entrusted to us by GOD. We know that it does not matter what happens or how the boys progress, we will be there for them and be over-joyed by whatever progress they make.

From a mother's heart - keep moving forward, just remember that it's ok to move sideways or even backwards too, as long as you do it together.  

Transitional IEPs

Well, it's getting to be that time of year. The time when all good parents of children with special needs (and some in traditional classes) get to prepare for what is called a transitional IEP (Individualized Education Program). This is what determines which class a child will be placed into the following year. As we approach the transitional IEP this year, we are faced with the possibility of Daniel and Anthony being separated for the first time since they've both been in school. Unfortunately, because of the way the school system is here, they may not only be in separate classes, but could need to be place in different schools. (Which I have an extremely hard time even contemplating.)

Transitioning from one grade to the next when I was growing up meant that once you passed your class - tests - you would automatically be placed in the next grade in the upcoming year. If it

was Kindergarten through sixth grade - you were in elementary. Seventh through eighth grade was middle school or Jr High. Then came high school, Freshman, Sophomore, Junior and FINALLY Senior. It's a whole new ball game in the special education system. There is so much to learn, not only about what your child needs, but how they can best get what they need.

We are at the place this year when Daniel is due for his "triennial" review, (every three years), this means he will be totally reassessed this year. They will test him on what he currently knows, fine and gross motor skills, verbal ability, ability to follow directions and other things necessary to figure out what level he is learning at. They will also compare the information to the IEP assessment done three years before. In our case, we are unsure where Daniel lies on the current scale because he has been "consistently inconsistent" in his learning. On some levels he has been doing great, on other, not so good. He has virtually stopped talking altogether, speaking only with verbal imitation (copying what he's told to say) and requesting what he wants to eat. The requesting is even tough to figure out because he has started whispering.

It is quite stressful as a parent because you don't quite know how your little one is doing - according to the tests and the data the school has put together. Will they be ready for the next grade level? Will they get what they need in the next class? Should they move forward? Should they be held back? Like most parents, I check in almost daily with the teacher, so I get to hear what we need to work on at home, I find out how they are doing on a daily basis. This is daily so it doesn't show the complete picture. It's kind of like having your picture taken and when you see it, you don't quite recognize the
"large" person in the photo (when did you gain weight? Why didn't anyone tell me? - at least that's what happens to me.

Anthony will have a regular transition IEP, we will go over the goals he's met, what he retained, and which type of class might be best for him in the next school year. The hardest part is to know what you believe your child is capable of versus the reality of what your child is capable of. Early on you need to think your child is capable of anything, so you don't hinder them. You never know what you child is capable of until you try to teach them. They will either confirm what you think, surprise you or make you realize that you need to maybe lower your expectations (just a little of course).

So, for all you parents facing "transitional IEPs" just remember that you are not alone. When you feel overwhelmed at the prospects, breath. Take a walk, relax for just a minute, and remember that with an IEP, you have the ability to request an emergency IEP meeting if your child is not getting what you think they should be.

From a mother's heart - remember that you are your child's biggest advocate.