Twin-epathy

As I sit at the table in our dining room and watch my boys doing ABA, I realize just how far they have come. I am also realistic enough after two plus years to know they still have a way to go. The boys have separate kiddie tables about 12 plus feet apart in our living room. Both boys are doing pretty well as they move through their individual programs. The behavior instructors and the boys have gotten use to working with each one individually while another session goes on just feet away. Every so often, one will listen to the other working and answer for them. For example: Daniel will be told to say "red ball", he won't want to comply. A few times of hearing "no, try again" - Anthony will pipe up "red ball". It's very hard not to laugh when it happens. There are times when, as twins, they will totally feed off each other, sometimes good and sometimes not so good.

Some days they work through their programs and everything goes relatively well, not too much distraction from each other. One may be a little upset, the other pretty much ignores it. Then there are those days, when one will start to laugh and set off the other one. Shortly thereafter, the "giggles" start and it will bounce back and forth. It gets really hard not to laugh as they slowly begin to get full on belly laughs going.

Then, there are the "not-so-good" days when, one will get upset. Depending on the depth of despair (so to speak), the other will be "set off". As deliriously as they laughed together, they will cry just as hard. The difficulty is to get at least one of them to realize that the other one is alright, and the world is not ending. Comforting them is sometimes difficult because they think they should be able to stop working completely. The trick is to keep them working through the tears. I know this may sound harsh, but, I've noticed that this also helps them to redirect away from emotions they may get caught up in. I am not talking about "boys don't cry" or anything, I don't believe that in any way, shape or form. I'm also, not talking about legitimate "hurts" (emotional or otherwise). I'm talking about the fact that , my boys at least, will be "over" whatever seems to be wrong in a matter of a couple of minutes. After that, they don't even appear to know why they are crying anymore. Whether it's from autism, age or delays, our boys have a tendency to get caught up in the intense emotions for a longer time, especially when not redirected as soon as possible. It's almost as if a switch gets thrown and it gets stuck in the on position, you just have to figure out how to "UN-stick" the control.

I've learned that identical twins, either with or without autism, seem to maintain their "twin connection". The one that says, "I know what you're thinking... feeling... etc." The, "laugh at the same time - and laugh harder cuz no one knows why we're laughing..." The boys have always had a connection unlike any other I've known, they definitely have the twin-telepathy, twin-empathy or what I like to call... twin-epathy. At first, we thought great, they are being social with each other, it must be a foundation we can build on for their social skills... how WRONG we were. The psychologists we spoke to made it very clear that the twin connection is one all it's own. Though it had already been proven to us by the boys, I still researched and found that data shows it's true more often than not.

Though the boys are identical in virtually every way, they still have their own identity, moods, looks, etc. They even are on different levels of the spectrum. So, whether singles or multiples, it once again proves to us that no two people with ASD are exactly alike.

From a mother's heart - enjoy your kiddos. Their moods, play, words... them. Stay positive and remember your babe(s) are individuals, regardless.

I'm Listening

Now, of course I am quite biased... But, I think we have been blessed with two of the most beautiful, special, identical twin boys. After waiting years for our babes, it seems almost cruel to not be able to converse with them in a way you would expect for kiddos who are 5 years old. Don't get me wrong, it makes for a joyful celebration around our home any time the boys connect with us. The times when we all realize that we are indeed in agreement as to what it is we are trying to communicate. I find myself imagining the most basic of conversations we might have some day...           

1. "So, how was school?"    "Fine."
2. "What did you do in school today"    "You know... stuff"
3. "What did you like most about today?"        "Don't know"
4. What did you dislike most today?        "Not sure."

I hear other moms complain that their kiddos never talk to them. I wonder if the kids really don't talk to them... are they asking the right questions... was it simply a one word response, or were the moms just not listening to what they are saying. I want to make this perfectly clear... I am not judging anyone and it actually tickles me because these type of complaints about conversations between parents and their kids have been going on for years (probably since the beginning of spoken language). Every time I hear it from anyone, I think these things. I wonder if my kiddos were "typical" if I would also be saying the same things.

I would love to hear the simple one word response from my guys, or standard kiddo response - just know that they heard me and were answering me in proper context. I love my boys, but I honestly want to scream sometimes: "answer me! when I talk to you" I would never actually do this, and besides, if I did It would be pointless of course. ASD makes it so hard sometimes, it's just an ache to hear my babes respond verbally. I imagine if I ever even uttered those words,  I would probably get the following looks:

Then my heart would melt, and I'd remember that they communicate so much with their eyes and actions. I know we will find the right way to communicate as time goes on. To hear the answer come from them without being prompted. I know that many parents are in the same boat. For our kiddos, one has so many words, I've lost count. The other is pretty well non-verbal, he communicates - repeats by rote only. He does fairly well at verbal imitation, however, he mostly mumbles at this point - which we hope is only temporary.

So, for now, we continue on with the ABA, school and whatever we can do to prompt them to talk. But no matter what happens, we try to make sure to let them know: I'm listening.

From a mother's heart - God bless all those waiting for those words to come out (kiddos and parents alike).

Everybody's Normal Till....

There's this book written by John Ortberg called Everybody's Normal Till You Get to Know Them. I hate to be the bearer of bad news, but... Ready? No one is "normal". People who are "typical" may be the "norm", but they still aren't normal. I have always said that I was not normal, that everyone who knows me knows that I am not the "norm". I ask the inappropriate questions, I say things without necessarily thinking how they will sound. I wasn't the brightest bulb in the closet as a teenager, so suffice it to say, I've learned to be a little more truthful than I should be sometimes. But that's me. I'm proud to say I'm not normal. Now with all that being said...

We learned when we went through the assessment processes with our boys, that autistic children are considered "atypical" they are not the "norm". Well then, I ask, who then, is? We all have our ideas of what normal is, but how boring a life would it be if everyone were "normal". I think I'd go insane. I would love to have the "perfect family", little ones all neat and tidy, picking up after themselves, helping with chores... Instead, most everyday ends with the old commercial "Calgon, take me away".

Once we decide to acknowledge the fact that no one is indeed perfect, normal or even close things should be a little easier. We all have our flaws, quirks and pet peeves. So, doesn't that really mean that we are all atypical in some way? Are we any less or any more than someone else because we are technically "all" atypical? I believe that once we realize this, we should be able to get past the assumptions and judgements we have a tendency to make about others. What a burden would be lifted.

Now, we should be able to get past this inherent flaw we have to judge others. It shouldn't make you feel better because "I am thinner than her" or "I'm smarter than him" etc. Just because someone doesn't think or learn in the same way as someone else, does not make them less than.

Merriam-Webster says the medical definition of Atypical, an adverb, means: " : not typical : not like the usual or normal type ". Most people can not tell someone has an ASD just by looking at them. They don't look any different than anyone else. Aside from the way they act in different situations, you might never know. (This also depends on the severity of their disorder).

Question: Which one of the children in the picture has autism. Take a long hard look, they are all in a play/musical called:     Autism: The Musical.
Look really close and see if you can tell. Do you think you can tell which one it is? Be really careful. Of course, those who really know me, know that this is indeed just a trick question... Every one of the children in the photograph have autism. They are in fact a group of autistic kiddos who got together back in 1988 with Cinequest, to put on a musical about autism, using autistic kiddos.

The moral to today's message, never judge a book by it's cover and give everyone a chance to show you what's on the inside.

From a mother's heart, with love.

Let Me Into Your World...

In the beginning, everything seemed great. Boys thriving, little issues here and there. Shoot, who doesn't have little issues... sniffle here, cough there. Then it begins to become a little more. Walking on their toes, fingers flicking or flapping in a type of rhythm, delayed speech, spinning wheels on toys, no direct eye contact. These are just a few of the things a parent may notice early on. Alone, they are not necessarily a bad thing, but when combined... they start to create a picture, a picture puzzle.

I think that the hardest thing for a parent, is the loss of a child. Next on the list (for me) would be to find out your child my child has a fatal disease. Then would come a serious illness, disease or disorder. I'm referring to the ones that can be managed, maintained or dealt with in ways which help improve the quality of life for the child. For us, having twins diagnosed with autism was certainly a shock in it's own right, however, we began (like most parents) putting the clues together long before our boys were diagnosed.

The best way for me to explain the regression of autism is to loosely compare it to Alzheimer's. I've watched someone with Alzheimer's, completely trapped in time for a bit, forget who their loved ones were who came to visit, forget they couldn't do something they could before, watched them lose functions they once had. You become someone they remember for a moment, and it's gone. They remember you, or someone from their past that you remind them of. (The list goes on, but I think you understand.) As a parent with children who have autism, watching Daniel regress was difficult, because there was nothing we could do. One day he knew so many things, and the next day (virtually) he looked confused when we tried to get him to respond to those things. We could see in his eyes that he didn't understand what was going on, that the information was still there, but now we had to find a new way to get it out.

Anthony regressed later, and it was actually harder to watch. He didn't have an "overnight" regression as Daniel had, we watched things just slip away. It made it harder and took longer to get him the proper diagnosis. Anthony would be counting the stairs one day and look at you like you were crazy for asking him to count them the next. Several times we were told it had to be something other than autism, but, when everything was said and done, that was his diagnosis too. The only difference was the journey, but the end result was the same... Autism Spectrum Disorder.

Those I've talked to either knew something was wrong immediately, or watched as the child they knew changed right in front of them. We realized that it doesn't matter how things happen, ASD will affect everyone in the family. We all have to get to the place where our kiddos let us in. For me, being a stay at home mom, the boys were around me 24/7. They knew I was there for them to come to, they interacted with me as much as they needed to. They even tolerated me when I inserted myself into what they were doing. It was harder for Steve I think, Daniel really had not gone to him on a regular basis before he regressed, he would always come to me. Then, Daniel chose me over virtually every one else. It would be almost a year later before Daniel would "let him into his world". Anthony doesn't have as extreme a form of autism, but it still caused him to close out others, and took a bit to allow people "into his world" also.

Every day holds it's challenges, accomplishments and failures. Every day has it's tears and smiles. Every day is a chance to make headway into the gap that exists between their world and ours. All we can do is move forward, forever asking them to... Let me into your world...

From a mother's heart. Have a wonderful week.

Autism is Autism Regardless...

Back to the blog... More than one of the four psychologists we have seen over the last 4 years said: "Autism is autism no matter what the severity". We have twin boys that both have autism, but, they are very different in terms of severity. One is higher functioning than the other, but they both have autism. Once you get past the fact that your child has been diagnosed as being on the spectrum, it's time to take action. Every parent I've talked to so far has said, like us, the first thing they did was research the web or library for hours to learn as much as possible. I know that I read more in two weeks, than I'd read in probably two years when Daniel was diagnosed.

Our job as parents is to love, accept, research, learn, help and teach. There are many more jobs of course, but these are the basic. With the help of family, friends, special education, ABA, medical and psychological help, we can do our best to provide the best intervention we can. We cannot allow of kiddos to remain in their own world. We must pull them out, little by little. Learn what works best to help them to learn and retain the concepts they are being taught.

Many people try vitamin B injections, strict regimens. I have recently read about many children on the spectrum having digestion issues and compromised immune systems, which require different diets. Some people think that by ignoring it, the problem will "work itself out" - it will not. There are many approaches and many beliefs, i believe the best approach is using a combination of efforts. Now, I am by no means an expert on autism, I have only my experience with my boys as a guide. This is the same for all parents and caregivers of someone with ASD.

New guidelines for autism will come with the DSM-V (Diagnostic and Statistical Manual of Mental Disorders) used by psychiatrists and psychologists.
Due for publication May 2013        http://www.dsm5.org/Pages/Default.aspx 

It is removing the categories of Aspergers and PDD-NOS. It is believed that 75% of those diagnosed with Aspergers will lose their diagnosis and possibly lose services. The PDD-NOS diagnosis will also be going away and it is believed that around 79.95% of those diagnosed will also lose their diagnosis and possibly their services as well.

http://www.tacanow.org/family-resources/dsm-v-goes-forward-major-shift-in-diagnostic-criteria-for-autism-spectrum-disorder-approved/

Those with Aspergers and PDD-NOS will most likely be requested to be re-diagnosed. Those with more tendencies on the "autistic" side of the spectrum will likely be diagnosed with autism, however, it is believed that those with more of the "social communication disorder" will lose the diagnosis and their services. This is because there are no programs currently approved to treat social anxiety and communication disorders at this time.

So, no matter what happens in the near future, there will be a major change to what is called the autisic spectrum disorders. It has been stated that these changes are being instituted to make it easier to diagnose autism. I, for one, and those I have talked to don't believe this is the case. We have come to believe it is being changed because no wants to completely define Aspergers or PDD-NOS, which many psychologists and psychiatrists don't want to diagnose.

We'll just have to wait a few more months and see what develops. As it is, it's  sometimes very hard to be diagnosed properly for autism, hopefully this will help. Though I'm skeptical, I am also cautiously optimistic.

From a mother's heart, have a good day.

To Label or Not To Label...

In the beginning there was this beautiful - perfect child - 10 fingers, 10 toes, big ole smile that just melted your heart and took your breath. You would study them, unbelieving that this beautiful, fragile itty bitty life was placed in your care. Your heart overcome with love, knowing instantly that there was/is nothing you won't do for this child. No signs that anything was wrong... at least not right away in most cases.

I remember when we finally realized that something was "wrong" not developing properly with the boys. Our first indicator was that Daniel was taking longer to do the things Anthony was doing. That he seemed "delayed". I filled out the "15-month" ASQ (Ages and Stages Questionnaire) for the boys, and luckily my sister was with me. She read the questions aloud and wrote down my answers (since Steve was unable to make it). I tended to the boys while we waited for the doctor to come in. When we got to some questions, she would correct me if she had noticed something different than what I was thinking. She knew boys very well, she had been able to help me quite a bit back then. She opened my eyes to the fact that Daniel had taken longer to reach milestones than Anthony, and that he had not been talking. He was only pointing and making impromptu sounds when he wanted something. Then I realized that he wasn't doing other things that I thought he had been. I came to the realization that we (me anyway) had been seeing Anthony do things, and just figured I hadn't "noticed" Daniel do them. I just "assumed" (which of course, we should never do) that Daniel was progressing the same as Anthony.

Everyone I talked to was quite adamant that we not get the boys "diagnosed", not allow them to be labeled. Get them assessed and pointed to the right services, but don't let them be labeled. Maybe because I'm older, or because of what we went through to bring our little babes home, something didn't seem right about not letting them be labeled. Daniel was first assessed with speech and global delays. This allowed us to get him speech therapy and an in home visit by a special education teacher once a week. But by the time he was almost two, he had a full regression. It took several months to get him reassessed and "labeled properly"  so that we could get him the services he needed for autism.

Because of hoops we had to jump through to get Anthony the proper diagnosis also, we learned that it is better to have a child "labeled" so they can get the services they need. Most people I've met said they didn't think it was right to label them, it would follow them the rest of their life. I look back and think, from the beginning I wish I'd asked myself these questions (and answered them honestly and realistically)...

• Does the label changes who they are?          NO
• Do you think the label keeps them from doing something they should be able to do?          NO
• Do you think the label will create a specific behavior?          NO
• Do you think the label will make people will look at your child differently?          Not if they can't tell by looking...    Not if you don't say anything
• Who does that label really bother and/or affect negatively?          ME
• Will the label do more harm than good?          NO
• Will the label help my child get what he/she needs?          YES!!!

Please don't let society's issues - cloud the issues which need to be addressed in your family. Don't let the "lack of a label" keep your child or loved one from getting the help they need.

Love to all... From a mother's heart.
Lisa

Empathy, Emotions and Love

We've had a great couple of days all-in-all. A little busy, but great days non-the-less. Yesterday we started off the day when the alarm went off - Anthony was up and running. Daniel took... a little more convincing that it was indeed time to get up (considering they had just finished their winter break). Once we have breakfast and all the morning "school day" routine done, we generally have about 15 minutes to snuggle and get ready for the day. Yesterday (and today) was a little bit different, the boys were so ready to get back to school, they wouldn't sit together with me on the couch. That rarely happens... I know it's actually me that gets the most out of it. So, needless to say, I was a little bummed.

The appeal of getting back to school, back to their routine - completely guided their behavior. I've watched the boys extra close, since they were diagnosed, and have found that no matter how much I wish otherwise, my boys lack empathy. I have read that most people on the spectrum are like this. They lack empathy and sympathy. But, I think every one of us wants to believe their child cares about how their family and peers feel. Truth be told, the only time "our" feelings affect our boys is when it affects them directly. For example: if we are upset, the boys generally pay no attention, there is no consolation or even concern. However, if us being upset keeps us from responding to them, they notice and get upset themselves (but not because we are upset). They may have no response, not know how to respond or even have an inappropriate emotional response. They actually have to learn what the emotions look like and learn the acceptable response.

    

I remember reading many "stories" where people said that autistic people lacked empathy, sympathy, emotion and ability to love. These were written mostly by "professionals". I have learned that the first two are quite often true. At least with our boys and the other kiddos I've met. The last two are total B.S. in my book. (Not that it means anything to anyone else). I have read and been told that children on the spectrum are not social or loving. Social, I understand, they will generally be off by themselves rather than interact with others. They usually have to learn to play appropriately with others, or at least learn to play side by side with another child (parallel play). What I totally disagree with is the "lack of emotion or ability to love" statements. I know for us anyway, we had a hard time even getting our boys initially assessed for autism because they were "too loving" and "too social". The biggest issue with people "in the field" was only seeing how they acted around us. But... not around other people or their peers. Not all children on the spectrum avoid touch (though some do).

Our boys have shown us a whole new level of emotion and love, we are learning more and more everyday. They are very intense with their emotions. When they are sad, happy, mad or anything else... they own it. They will completely express what they are feeling. The difference between those on the spectrum and those who aren't is - when they have a specific emotion, they have no regard for what anyone thinks or how others may feel about it. Just like people might like to be however, they aren't ashamed or uncomfortable because of how they act. They experience an emotion, then move onto the next. Because they can and do live in the moment, the previous emotion is now forgotten. There are also those who say that people diagnosed with ASD are not capable of love. I totally disagree, if they are capable of emotions, how can they not be capable of love? I see my boys are totally partial to being with certain people. They prefer the company of those people, and they will only come to someone in particular when they are in need of comfort.

So, know matter what anyone else says, what the "data" says, one thing I will always agree with is that everyone on the spectrum is different. They all have some "similar" behaviors (which define autism), but, they are not all the same. Everyone has different personalities, different ways of learning, processing etc. People with ASD are no different. Just because they are on the spectrum does not mean they all do this, or don't do that, all have these issues or those.

From a mother's heart.

Teachers and ABA Instructors - YOU ROCK!!!

Well, tomorrow is back to school for the boys. I must say it will be welcome... by the boys and me. Not that I don't enjoy my time with them, but I have come to realize that I can't give them everything they need. I find it difficult to keep them both so busy with a routine that they can be truly engaged. I think what makes it tough, is what I've grown up thinking was fun, engaging and fulfilling, isn't what two boys with autism think of at all. About the only things we all agree is fun, entertaining and fulfilling are: the play ground and Disneyland. While Disneyland is great, it's generally not something we can afford to do more than twice a year (and that's only because of annual passes). The playground, while exciting and fun, is also only a once in a while adventure. Mainly because as much as I love to take the boys, I generally don't have the help I need to be able to monitor where they both are at one time. While Anthony is pretty good at staying close, he realizes that most of my attention will be on Daniel (since Daniel wanders). It's like the "twin connection" kicks in and they decide they'll both go in two different directions and "see what mom does"...

 

Being on the spectrum makes it so they require so much attention. Not that a typical child doesn't, but because those on the spectrum truly live in the moment virtually all the time. It takes so much more repetition for the child with an ASD to really grasp what it is they are to do. I am so grateful for all the teachers, ABA behavior instructors, doctors and all those who work with children who have special needs.

I am very much in awe of the teachers and ABA behavior instructors who work with autistic children full time. They have a special place in my heart (and I think... in heaven). They have so much patience and love that they stick with it when they work with our kiddos. It's a choice they make, they consciously go into it, knowing they will be working with children that generally are not going to show any appreciation. They are so focused and gentle when it comes to helping them learn. It is definitely not an easy job. I'm not in the classroom, except special occasions, because I am too much of a distraction for my boys. We are very blessed to have two very loving and cuddly sons, they will not only allow physical contact - such as hugs or snuggling, they will actually seek it from the family. (Of course I realize that it isn't for our benefit... but that's a topic for another day). However, in the classroom, one of the boys may completely ignore me, while the other sees me and has to be with me from that point on. Then once the other has had enough of class, they will seek me out to let me know it's time to leave. (Even though it isn't of course).

 

I am very grateful to be able to watch the boys as the ABA behavior instructors work with them. I not only learn, but have input on how we work with them. I have learned many of the "tricks" to get them to work (even though they won't "sit" and work with me) so that, we as a family, can use those "tricks" in practical everyday situations. For instance, if the kiddos want something to eat, we will keep telling them to "use their words" until they either ask for what they want, or tell them to "say,____" to get what they want. We constantly tell them to "look at me" when we want them to focus on what we are saying, or trying to get them to engage.

I also give single parents a big thumbs up. I can't imagine being a single parent at all, but to be a single parent with a child on the spectrum.... WOW! I know what it's like to not only have twin boys that are autistic, and I don't always get the help I wish I had, but to have to do it alone. Oh my word, you singles are awesome to manage at all, let alone with the coordination it takes to make sure your kiddos are getting what they need. I know that I am so pleased with the services we receive - it helps so much, and I know in the long run, our boys will be so much better for it.

Don't forget to thank those who have such a big impact in your and your child(ren)'s lives. And don't forget that you are special too, you have been given a wonderful opportunity, to make a difference in the life of a child - one that may not have had a chance otherwise.

From a mother's heart. Have a wonderful and blessed day!