Promises...

With the new year just a day away, we pause for a moment to reflect on the last year and also look forward to the new year. Each year millions (at least) of New Year's resolutions are made. Based on some studies it is said that less than 10% of all resolutions made will be kept throughout the year. I have a challenge for anyone out there... don't make resolutions... make promises - realistic promises to yourself and those you love.

•       Don't resolve to lose weight... promise yourself to eat healthier and try to exercise when you can

•       Don't resolve to be a better person... promise yourself to think of others first, treat others as you wish to be treated and help out when you can

The list of course goes on and on. For every resolution washed down the drain, a promise can kept more easily kept. People, for some reason, find promises mean more than resolutions. Especially when made to another person, they have the peer pressure - so to speak - to keep them on track.

For me, my promise is to my boys, my family and every person affected with an ASD (Autism Spectrum Disorder). To help my boys be the best they can be, to get them any services I am able to, which will help them to grow. I promise to do all I can to make others aware of what autism is whenever I can. To do my part to help others to function in a world that doesn't recognize their special way of being. To love everyone I come in contact with enough to want them to be informed about something that is growing so rapidly, that almost everyone will be affected by an ASD within the years to come.

Please learn, teach, get involved somehow, even donate if you can to autism research. But mostly, don't judge others by what may seem like a tantrum by someone they are with. It just may be a disorder you know nothing about. Ask the person they are with if you can help them in some way, they are probably embarrassed or just as uncomfortable as you are to witness it. If you have children, recall the time(s) and how you felt when your child misbehaved or had a tantrum. Let them know you understand their position. I state it this way because anyone affected by autism (wherever they may be on the spectrum) already has a compassion, and a kinship if you will to others in that situation.

From a mother's heart:

The First Week of Christmas... Break

I hope your Christmas went well this year. Ours went better this year than last year. I'm not saying that last year wasn't a great Christmas, because it was. This year though, the boys were more aware. Because of the last few years, we decided to only wrap a few of the boys gifts, and leave the rest unwrapped. Well, this year the boys were more ready than us. Anthony got so into it that he ended up helping others open their gifts. Daniel still needed a little help getting into opening as well (Anthony was there and willing to help too), but unwrapped more than last year too.

Anthony was so focused on this gift...

Showing joy, I think we were more tickled to capture it

Daniel getting a helping hand

Well, now that Christmas is over and I've done all my baking for the year, (so to speak...) to which I know my boys are happy to have most of my attention again. I end up baking for about 4 days. Making the boys wait for items to go into the oven to get my full attention.

 

Now for the most part Anthony loves sweets, so he'll be patient enough when I tell him I'm cooking. Daniel couldn't care less. He wants my attention completely when "he wants it" and it doesn't matter what I'm doing. Anthony will also hit a point where he also doesn't care what I'm doing. The same as most kiddos, but the big difference is that if I don't balance my time properly, once the overload begins, they bounce between the two of them and it just escalates. I suppose most twins will do this in a similar way too. Now understand that I already know this, but like most people, I get going on something and I think "just a few more minutes".

With school out, and ABA on a couple of days break, the boys lose the structure for a few days. It can easily become complete chaos in our home. The morning starts out alright, then mid morning hits and the boys will do anything to avoid working with me. We use to work together on colors, number, etc., when they were younger, but now... I'm mom. They don't want to work with mom. If it's a day when we have ABA, they are set back on the routine and everything goes well. If there isn't ABA, the day will be a downward spiral of meltdowns if I can't keep them busy enough.

Since school vacation started we have had a total of 7 days off, of those 7 days, the boys have had ABA 2 days (would've been 3, but they weren't feeling well and I had to cancel one). So far so good. Now into the next week...  
:)

'Tis the Season

Interesting, wonderful and exciting, just a few adjectives used to describe this time of year. Christmas lights hung outside for a beautiful glow to be seen by those who venture outside after dark. Glorious reminders of the bright star that illuminated the sky over 2000 years ago. Beckoning shepherds to the manger where Jesus lay. The story is told from different angles in the New Testament of the Bible. All of the ways it is celebrated today, and the different religions which have their celebrations at this time as well. What a wonderful time of the year to celebrate with family. To hopefully focus on something other than work, other than the stresses of everyday life (at least for a little while).

                                       

The stores are busy with last minute shoppers, those who have forgotten something and those who, possibly are just beginning their shopping. The closer we get to the "big day", the more crowded, excited, anxious, frustrated, impatient, rude and angry some people become. It's like some people become so focused on themselves and what they need to get done, they forget that there are other people going though similar stress. It actually makes it twice as hard to go to any store with a person who has autism, or simply somewhere on the spectrum. For us, our boys have enough of a sensory overload on a regular shopping day, let alone when the stores are crowded. The more crowded, the less time we actually have to make it through that store.

                        

Keeping the little ones calm this holiday season is one thing that definitely helps for a better holiday - for all. Some tips for anyone with children with ASD, high anxiety or just a typical little one. Plan out your shopping in such a way that you either leave the kiddos at home, explain where you are going, use a visual schedule so they can see what is expected to happen. Have contingencies for unexpected events. Limit time spent in each store, bring a snack and a drink (or get one where you are shopping). Do things to redirect a kiddos attention when they start to show signs of agitation. For us, we avoid the toy and any other area where there are a lot of people congregating. If we have too many places we need to go and can't wait until another day, we will try to come home to eat, rest and regroup before heading to the next location. It's easy advice, not always the easiest to actually do.

 

If all else fails and you feel your blood pressure rising to the point you are about to explode. You feel like you have absolutely no patience left for anyone. You really want to do something mean to the person who just cut you off in the parking lot, or stole your spot. Stop, breath - breath - breath and from one of my favorite movies (Madagascar):

Then go home, put on something your family can enjoy, music, Christmas movie - play a game. Something to remind you of the season, and something to allow you to enjoy your family. Remember that this is the season for joy and happiness:

And in case I'm not able to write again before.....................Have a Very Merry Christmas!!!

God Bless You and Yours!

Grieving and Resilience

How resilient our children are. Not just our boys, but every child out there. I have found it very hard to sit down and focus on writing my blog this past week, not just because it's the week before Christmas, or the fact that every time I've tried to sit down and write, I get pulled away... But because, being the week before Christmas, I can't imagine what the families in Connecticut are going through. I've started to start a blog page every day over the last few days, and then erased it all because I couldn't seem to keep my focus. I keep thinking of the presents bought, the empty stockings, the other religious celebrations that will be hampered by a missing spirit. Whether Kwanzaa, Hanukkah, Christmas or whatever they may celebrate they all have grieving in common.

This is a poem I've written for those in Connecticut I wanted to share before I get back to the regular blog...

Twenty-six hearts stopped beating,
Twenty children went away,
Six adults to shield them,
I can't imagine what they'd say.

To calm those precious little ones,
Before innocence was lost,
In a place that should be safe,
They paid the highest cost.

To learn and play and grow,
No longer will they roam,
Heaven stood quietly waiting,
To bring it's angels home.

Since last Friday, I have watched my boys a little closer, hugged them a little tighter and tried to interact with them a little more during "our time". I will snuggle them on the couch in between getting out of bed and school, sit and talk to them in between getting out of school and their ABA sessions. I will try to interact, and eventually snuggle and watch TV with them again between ABA and when daddy gets home. I have asked them questions that I know they aren't going to answer (at least not at this point), I've looked into their eyes to see if there is any understanding of what I'm saying. Everything I've read about people who have an ASD (Autistic Spectrum Disorder) that have learned to communicate when they got older, says they understood virtually everything that was talked about in front of them when they were younger. Because of this, we refuse to use the words stupid or fat in our household. We don't watch graphic news in front of our boys. We modify our behavior so they don't ever feel like they aren't smart, and we don't every want them to feel like they are a burden in any way.

                                  

We have noticed how resilient they are. Sometimes because of the autism, and sometimes not, our kiddos are quick to change their emotion, they don't "dwell" on anything. One minute the may be sad because they fell, someone took a toy or the routine changed, but the next moment they can be a happy as can be. They truly forgive and forget. They don't hold grudges. The outside world doesn't affect them. Those in direct contact with them are who they are focused on. They totally live in the moment. They don't lie, they don't purposely avoid someone. They follow where there eyes and hearts lead them. They are precious, innocent and curious. They are not out to harm anyone and they don't live in fear of being harmed. There is no concept of harming anyone else.

If only the world were like that.

I Can't Imagine Being a Parent...

Today I am going to address something other than Autism, frankly because writing is a coping mechanism for me, and I hope people will never forget to hug and tell your children you love them... EVERY DAY! Regardless of whether you think they understand or not. The following are my thoughts about the heinous events in Sandy Hook, Connecticut on Friday, December 14, 2012.

I, like many, am completely unable to think of little else than what transpired in Connecticut on Friday. When I went to pick up my boys from school, I found myself trying not to cry. Imagining the worst possible thing that could happen to a parent. To lose your precious child. To drop your child off, or take them to the school bus, that morning and that be the last time you see them alive. To receive an automated computer or text message from the superintendent of schools saying, there has been a shooting at one of our schools, but not stating which one. I imagine I would freeze for a moment and then... panic .

To rush to the school to find out if your child's school was the one involved. To find out it was. To hear that there are several children who have been shot. To frantically look around for your child. The relief at finding them, or the pain and anguish of not. To be escorted to an area and be told that your child is among the dead. To have to identify your loved one, through a picture because the scene is to gruesome. Because people who truly care don't want you to see and remember your baby that way.

To realize that these families have been affected by an outside force at a time when we are celebrating love. To know that Christmas presents must have already been bought and wrapped or not, will not be opened by the intended recipient.

Yes, my heart goes out that community. To all those families who are hurting from the loss they have suffered. As a people, we have been conditioned to accept the "circle of life". The growing old and passing away after what you would hope would be a long life. But how, how do you cope in this situation. I know that I couldn't do it without my faith, and even then I would have a really big crisis of faith.

Please take a moment to say a prayer, and if you don't pray - think about them - for all the families directly and indirectly affected by this tragedy. Hug your loved ones extra tight and long. Tell them how much you love them. Most of all give thanks for your family.

Image from Facebook

God Bless!

Waiting For Words

I see small children at the stores, walking with their family outside or at the playground. You hear them speak and find yourself asking "how old?" They respond and you are utterly amazed at the vocabulary and the way the child is able to communicate, to hold a conversation (to some degree). Then the other parent will inevitably say something like, "they won't shut up." You realize just how much your child is not talking. I find myself in this postition more often than not, but instead of feeling sorry for my child or myself, I try to make sure that parent realizes just how lucky they are. I will generally respond with something like, "Oh that's awesome. Yea, my boys have autism. One uses words, but is having to learn how to use them, and the other one barely talks at all." This will usually illicit the response, "oh, yea" and you know they simply don't know what to say. Others give the "I feel so sorry for you" look. Others try to change the subject. But my absolute favoriteare those who respond with, "I guess I never thought about it that way", and you know they mean it.

I never have initiated a conversation to make anyone feel sorry for me, my family or certainly not our boys. I have wanted to inform people about what autism is. Try to get people to understand what it looks like. Most people with autism, or on the spectrum, don't look anything other than "normal" (whatever that is). You generally have no way of knowing someone has autism by looking at them. The meltdowns or episodes that the person with ASD have closely resemble a temper tanrum. For us it usually happens when we are out too long, the boys are overly tired or hungry , or there is a sensory overload (i.e., too many people, flickering lights). The first reaction is the same as the mom who's child is throwing a tantrum: uncomfortable embarassment, then anger. The looks you can get and the comments you hear. Unbelievable. People don't usually realize that you hear almost anything when it's said about your child. But as you realize that all children have their issues, you slowly begin to have sympathy empathy for the mom who's child is having an issue.

I have actually printed my own cards for those times when someone is just plain rude when it comes to either or both of my boys having a meltdown. I've printed something on both sides:

                       

ASD is the fastest growing disorder (by which I mean more and more children diagnosed daily), and it's slowly being to be talked about more often. Most people seem to have at least heard the word. However, most people I've talked to (who don't have someone in their lives with an ASD) have no idea what autism is. It's amazing that until it becomes a part of your life, it's not something that's talked about,  So please, please, please - learn and talk about it. As much as it's being diagnosed, it will affect almost everyone at some point, whether it's a son, daughter, cousin, friend or just someone you know.

God Bless!

Just Being

I have been racking my brain lately for my next topic to write about. Quite frankly I kept coming up blank. I like to write about things that would be beneficial to read. That might help someone else, help someone learn about different faces of autism. To hopefully help someone not feel alone. Then, it finally hit me. It's not just about the autism, it's about the person on the spectrum and their family, their support system. It's about you and me and our loved ones.

                             

Sometimes we all just need to slow down and enjoy each other's company. No expectations, no pretense. Just enjoy our time together. Learn something new about each other. Be thankful for who we have in our lives. We don't have to go anywhere. But if we decide to, that's good too...

                     

It's all about the time we spend together, doing something or nothing at all. Just being. And I think that says it all. Have a wonderful day with your loved ones.

Breakthrough Moments

Every once in a while, every once in a great, great while... something wonderful will happen. Something so wonderful that you can actually forget, for just a moment, that your child has autism. They will give you a smile and there will be this beautiful "sparkle" in their eye that says: "Hi! It's me! I'm right here looking at you! I love you!" (At least that's what it seems to communicate). There are also those moments on another level, where your child will do something that you totally understand, and for an instant you know exactly what they are trying to communicate to you. You actually seem to "connect". I call these breakthrough moments - those moments when your child "breaks through" and you can see the child you know to be on the inside.

                   

Then, if you watch your child very closely, and you are really lucky, you will see the most wonderful thing... your child will open up and really break through. They will actually interact with you or they will interact with someone else. In our case, we got to watch our boys interact with each other. It lasted about five minutes, then they walked away from each other as quickly as it began. It is such a rare occurrence that when it does happen, you treasure it and you that find you can't look away. There is a joy that springs up inside you, that brings tears of joy to your eyes. You just want to shout out loud, "there's my child(ren) the one(s) I see inside every time I look at my child(ren)!"

                             

When you first bring your baby home, you can watch them sleep for hours. You imagine your baby's life unfolding. Wonder what kind of person they will become, what interests will they have. You imagine that your child will command the world in some way or another. Think about possible future from crawling and walking to school, dating, marriage and maybe grand babies some day. On and on and on. But, the bubble is burst when you find out your child has autism and you learn that the dreams you had will now have to be modified.

You realize that your dreams for your child are truly just that, your dreams. You come to understand that the dreams you had are no more important than what your child will become. You just realize earlier than you would have otherwise (most find out when their child is a teenager) that they will have their own path. They will simply be different than what you expected. Now you find yourself wondering and dreaming about your child communicating, being able to socialize. To be able to take care of themselves.

There are no complaints here. If we could do everything all over again, we would not do anything different. We love our boys and even though they have to work harder than most children to fit in, they are no less awesome and very smart boys! We - like any other parent - will go through whatever we have to in order to ensure our boys have whatever they need to have the best future possible. God Bless all children everywhere!

Medication, Diet, Supplements.....

We had decided in the beginning of our family's "autism journey" to hold off on any medications (should they be needed) for as long as possible. Daniel had been mildly aggressive when he got frustrated, sick or tired. After he had been doing ABA (Applied Behavior Analysis) for about nine months, we noticed that he was able to redirect how he acted out. The tantrums and episodes diminished greatly. But we noticed that his stimming (self-stimulatory behavior) increased. It would be a few more months before that would be diminished, again, he learned how to redirect himself. It wasn't until recently that he started becoming aggressive again, and this time it was with everyone. Out of nowhere he would hit, pinch or bite. Totally out of what his character has become. We've also noticed an increase in his stimming behaviors again.

Anthony was completely different... He had aggression early on. Not really severe - but it was there. With him, we would have to completely restrain him and allow him to thrash until he couldn't thrash anymore. It took quite a while to determine if it was a tantrum or an episode. It would occur at times when he didin't necessarily get his way, but would also happen out of the blue. Afterward he would look at us like "what just happened?" and be totally exhausted. We sought help and were told initially that it was just frustration from not being able to get his point across, inability to communicate. He would bang his head on the couch, headbutt, hit, scratch, etc. He started to control himself more once he started school. However, after a while, he was showing more and more autistic tendencies, and the aggressiveness came back in spades. It continued to get worse over time. He also showed more ADHD (Attention Deficit-Hyperactivity Disorder) characteristics. He would bounce off the walls, we couldn't do enough to tire him out. At bed time he was like a ping pong ball, jumping, do "acrobatics", running in and out of the bedroom. The only time he seemed to calm down was when he finally went to sleep, or... when he had sugar or something else that seems to boost energy. (We learned that the brain in ADHD is looking for stimulation, which means that ADHD is actually treated with stimulants).

                                    

Anthony's aggression had never gone away. Unfortunately it started getting worse, so bad that we had to have a behavior plan established for school, so they would know what steps to take in order to calm the behavior. He had always slapped, pinched, headbutted, scratched or kicked... but, he started biting. I was the first recipient of this behavior and he broke the skin, it took forever to heal. It happened so quickly he didn't even seem to realize what he had done. This really was the last straw. We knew we couldn't allow this behavior to continue.

We have recently begun Risperidal (Risperidone), one medication that is used in cases of autistic aggression (of course it, like most medications are used for other ailments as well). For Anthony, the aggression has greatly subsided, but it brought out more stimming behavior, OCD (Obsessive Compulsive Disorder) tendencies (that he had before) and he was extremely tired when we finely got the right dose (which luckily, didn't take long). His doctor recently added prozac and he is back to the happy, energetic boy he was before. (But without the aggression). I have talked to many people who have also have their children on these medications with varying effects. We have also begun the Risperidol for Daniel - aggression is virtually gone, and we'll see how the rest goes.              

Because there are many disorders which seem common with ASD (Autistic Spectrum Disorders), there are many medications which can be used for them. I have talked to several moms who have had success with:

• changing their child's routine
• changing their child's diet (to organic, casein free or gluton-free, or some variation)
• using herbal supplements
• incorporated certain vitamin regimens
• medications

        

Most of them have gone through more than one to find something that works. Many have found two or more together get results. The bottom line is: no child is the same and the same method will not work for every child. The best thing is to make sure you follow up with your doctor on a regular basis, and report the good and not-so-good things that are happening on the medicine, diet or behavior therapy. Your doctor is your best ally when it comes to your child's health. Make sure they stay informed and write everything in their chart.

We have come to the realization that any course of action that helps your child function in the best possible way is always the best way to go.

A Few Ailments of Autism

We, like many parents with children on the Autistic Spectrum, have and are dealing with different digestive issues with our kiddos. We have gone through many different issues since the boys were tiny. We had to start off with soy based formula because the milk based upset their stomachs and came out quicker than it went in. They were constantly gassy with regular formula. This led us to believe (in the beginning) that they might have been allergic to milk. Once they were a year old we had a rast test (short for radioallergosorbent test - a blood test used to determine what substances a person may be allergic to). We found out, in our case, that the boys were not allergic to milk, but rather, they each had airborne allergies, and Daniel had a high enough count to show he was allergic to peanuts and eggs. [We have also found out that the RAST test does not show one-hundred percent that there is an allergy, it only shows the possibility or likely hood that there is an allergy]. Precautions should always be taken when there is an allergy - possible or proven. When our kiddos are big, and old, enough to handle it, we will have the skin tests done to be sure either way. Hopefully we will not have any anaphylactic reactions (a severe rapid reaction by the whole body to an allergen) before then. Generally there is not a lot of time to treat a severe allergic reaction, therefore, a person should always verify an allergy with their doctor, who will generally prescribe an epipen or EpiPen Jr (to be carried on their person at all times), sometimes a prescription for prednisone (depending on the type of allergy) and always, benadryl should be kept on hand:

                    

I have researched a lot of the issues our boys have had, and after digesting it and weighing out what appears to be right with what is wrong... I have come to the conclusion that there is so much more to learn about autism and it's effects on our kiddos. This blog is not the end all - be all - of autism information. I am trying my best to negotiate our path through learning about autism for our boys, and hope to pass on what I've found, and in the process learn as much as I can.

Many people with asd (Autistic Spectrum Disorder) have some or several of the following issues (there are others, but for now...) :

• medicine or food allergies
• eczema or other skin ailments
• mal-absorption issues, digestion problems, gastrointestinal issues
• sleep problems (getting to sleep or staying asleep)
• problems with lights (i.e., too bright, flashing or pulsing), sounds (i.e., too loud, sharp, piercing or some music), textures of food, clothing or objects
• Pain throughout their bodies
• High pain threshold, lack of or diminished feeling of pain (from the outside)

Eczema and skin ailments are generally handled with lotions, special soaps or prescriptions. Mal-absorption, digestion and gastrointestinal issues are usually properly diagnosed and treated by a gastrointestinal doctor. Pain throughout the body is expressed in a variety of ways, sometimes screaming, lashing outward (pinching, biting, scratching, kicking, punching, etc) and sometimes self-inflicting pain (though not generally on purpose) [hitting or throwing objects, banging head, hitting  oneself, etc.]. Problems with lights, sounds and textures have to be handled on individual basis' and cared for as they arise. Pain throughout the body also has to be handled on individual basis as it comes to light. It could be physical, mental or phantom, but it is very real and needs to be addressed. A high tolerance or high pain threshold has to be watched very closely. We had an issue where one of the boys fell on our sidewalk, cried for a minute (because it scared him) and shook it off. It was only when we saw blood dripping off his hand did we realize that the scrap we initially saw was more like scratches through the skin, allowing slow bleeding. Kind of like when you pick a scab and the blood builds up until there is enough to drip.

Sleep problems are best worked out as a family and with the doctor (at least we have found this to be a good way for it to be handled). We had already made a "bedtime schedule", so we already had a routine in place to calm down for half an hour, then turn lights off to allow for another half hour of relaxing. Then the tv is muted, and they would generally be asleep within half an hour. Our boys would then wake up a few hours later and then... be "on" -  they would be fully awake for anywhere from 2 - 4 hours. We would have to be up and let them wind down on their own before we could go back to bed. This would happen anywhere from 3 - 6 days a week. We had already made a "bedtime schedule", so we already had a routine in place to calm down for half an hour, then turn lights off to allow for another half hour of relaxing. Then the tv is muted, and they would generally be asleep within half an hour. We began with melatonin, which helped the boys go to sleep quicker, they seemed to be able to get into a deeper sleep. Now, they would sleep through the night between 3 - 6 days a week. It still wasn't perfect, but it helped.

Keep safe with your eyes open and remember we all have things to learn. Hopefully we can help each other learn and grown every day. God Bless.

It's All About the View

A beautiful day to be alive. To know that your children are where they are suppose to be. To know they are safe. To take a moment and not worry... about anything. A wonderful day to realize that, even though it's been raining off and on all day... There is a different perspective to everything. I think about my boys a lot (who of course, doesn't think about their children a lot) I think about their past, present, near and distant future. I think about what they are going through in order to fit into "our" world. I think about how they see the world around them. Once something has their attention, they will do almost anything to be near it, touch it, taste it, or get it . How they study almost everything they come into contact with:

The first year we went to Disneyland they fell in love with Excalibur. They inspected every inch, and once that was done, they were fascinated with moving it a little.

That Christmas, the boys were so fascinated with the branches and limbs on the Christmas tree that we couldn't keep them away from it.

Both boys have always been fascinated with wheels. They could watch anything that goes round and round, for what seems like forever.


Daniel's current fascination is studying water. The sink, the outside faucet the toilet. Doesn't matter, he inspects everything, over and over.

Oh, to have that fascination with anything. So intense, you study it for virtually hours. Seeing it from every angle, trying to see what makes it work. Where is it coming from, where does it goes? How does it feel? How does it taste? What makes it work? So on and so on and so on. Never seemingly wondering why it is, but wanting to know what it is. So innocent, so pure, so questioning that you seek out your own answers.

To be able live in the moment, to see things and people for what they are, another piece of this big world we live in. To not have any ulterior motives. To go directly for what you want with no pretext. Simply to want to see, touch and experience what catches your eye. Granted it isn't always a good or safe thing, but it is... genuine curiosity. Not to have a worry in the world and simply live.

Not knowing what a grudge is or how to hold one. To truly forgive any wrong done to you - crying, getting over what made you cry, going on to the next adventure willingly. Not holding onto baggage that people can carry for years, for moving forward without a care in the world. Ready for that next experience.

Maybe it's time for us to pay more attention to how people on the autistic spectrum see things. Quirks to some - for them, pure unadulterated curiosity at the very least. Learning at every turn. Enjoy today. Enjoy everything you see, feel, smell and experience.