Reminders

The other morning after dropping off Anthony to school, Daniel and I headed to the doctor's office for his annual checkup. They've gotten too big for me to take them together (at least if I don't have another adult with me), especially since the doctor's office isn't their favorite place. They like their doctor and the nurses just fine - at least until they want to physically interact with them.

We've gone to the same doctor since the boys were about 13 months old, so the office staff and nurses know them on sight. They know both boys have Autism Spectrum Disorder (ASD). It helps because they've seen how the boys react to different things over the years, so they will ask when we get there if we'd like to be put in a room or stay in the waiting room. It always depends on how many people are there, what movie's on the television and how long the wait is going to be. They know there could be a meltdown if something isn't just right.

When it was time for Daniel's appointment, we take off his shoes an try to get him to stand still long enough to get his weight. Yay! Got it pretty quickly with no outburst. I wish I could say the same for his height. That took quite a bit of convincing and he still proceeded to fight. He hates to stand straight against the wall and have that ("measuring thing" they use) touch the top of his head. We've worked on it and some days he does ok with it... some days not - but we did manage to get an "approximate" height.

Then comes the wait in the room - the nurse comes in and asks the usual questions... then comes time to take his temperature, check his blood pressure and check his pulse. The nurse is relatively new and keeps telling Daniel what she needs to do... ok. I say, "Daniel - look at me. The nurse (her name) needs to... you can do it. Just like at home... touch the thermometer, we need to "tickle" under your arm... watch the baby crawl." Daniel, of course, decides he wants no part of it. So for the next 5 minutes or so I hold him and tell her to "just do it", while I continue to explain to him just what she's doing. I can only imagine what someone must think if they walk by the room and don't know who's in there.

Once everything is done of course, Daniel is just fine. No tears, no sign that he had a problem with anything. He's ready to wait for the doctor now... he's gotten some energy released. He's let us know that just how he feels about being there. Daniel proceeds to walk around and around and around. He touches everything he can reach, he's stimming (self soothing behavior). He'll try to swing things with cords in circles, run water in the sink. I have to move the doctor's chair out of the room because he's never content to just spin it around and around with his hands. He'll want to sit on it and spin around... shoot, I'd like to sometimes too.

Then the doctor comes in and asks the usual "checkup" questions... Sick lately? Appetite? Diet? Problems with any meds? Asthma under control? Drinking milk? Potty trained?

Daniel's gotten pretty good at letting the doctor "listen with his ears" (that's what we call the stethoscope). He'll let him listen to his heart and lungs. He'll start to contest when the doctor wants to look into his eyes, his nose, his mouth, which... he... is... not... going... to... open! Then the ears, which involves a really, really big hug - holding him so he can't move. Otherwise everything is fine.

No checking vision, no hearing test, at least not at the regular doctor's office. Those require specialists. Being non-verbal and autistic makes for a very interesting combination when it comes to specialists.

At the end of the visit, I am completely reminded of the differences between my son and stereotypical kiddos. All of these tasks that many parents take for granted that their children just do - all reminders of what my babe doesn't or can't do. That's ok, I have never considered myself "normal" - whatever that means, so I don't expect my family to be either. I do wish that certain things were easier for him though. The best part is that he is "healthy" and growing well. That makes me very, very happy.

From a mother's heart - those subtle reminders we receive that tell us our children are different than the "average" can also remind us that our children are indeed special. And sometimes special isn't bad at all.
God Bless!

Who's Not Smart?

Martin Luther King Jr.'s birthday was Monday and for our boys it meant... No school... No ABA... Fun day - see how many directions we can pull mommy in. Some people think that kiddos with Autism Spectrum Disorder (ASD) aren't smart. How wrong - they couldn't me much - wronger (it's really a word, really).

http://www.thefreedictionary.com/Wronger

Most of the kiddos I've met who are on the spectrum have been smarter than, well...  smarter than some adults I've met. Anyone who automatically thinks that someone with autism isn't smart - doesn't have a clue. I've watched documentaries, read articles and watched interviews where someone with (what was termed) severe autism proved those type of thoughts wrong. The person with ASD began showing how smart they were once a medium was found to let it out. Mostly it's been through computer, iPad or other computerized items.

Anyway... since the boys hit the place where I'm "just mom" (not that it's a bad thing) I've had to learn to be more creative whenever I try to get them to "learn" or "practice" anything. They don't want to play games, use flash cards, answer any questions that resemble school work. Not that they answer questions anyway.

The boys have learned how to mand, ask for something they want. They know that I get so excited for them when they ask for something without any prompting (asking "what do you want?"). So... they've learned that if one asks for something, the other can start getting into something they aren't suppose to while I'm going for what the 1st one requested. They will do this every so often and I know I'm not imagining anything, because they will laugh when I say something about it.

The other thing I'm learning is that my boys, and many other kiddos on the spectrum too, have learned how to manipulate very early on, to get what they want. They are no different than any other kiddo, stereotypical or not. They know how to get their way, the hard part for me was to learn the difference - quickly - between a tantrum, meltdown and an episode.

Once I learned the difference between the boys' tantrum and meltdown, I realized they'd been having more tantrums than I thought they had. But, that doesn't stop them from trying.

From a mother's heart - children are precious and very smart. Don't ever sell a kiddo short because you don't think she/he is "smart". Don't assume that someone isn't "smart" because of diagnosis or appearance. They'll surprise you if you give them the right tools.
God Bless! 

Exactly Who We're Meant to Be

I've been told many times how lucky my boys are to have me and my husband, I'm not always sure about that. I think that we are not only the lucky ones, but blessed to have them. Many times, over many years, I had prayed for children. I had imagined how life would be when we had children. Watching them grow, hearing about their day... just being able to share our lives as a family.

When the boys were still really small, it looked like everything was finally falling into place. We had finally come together as a family, they were growing stronger every day, meeting their milestones. They completed us, made us a family. Everything seemed perfect. But nothing's perfect is it?

When we received the diagnosis that Daniel had autism, I went through a period of "mourning". I realized that he would never be everything I thought he should be. When my "pity party" was over (and thank God it didn't take long), I realized that he, and Anthony too, was exactly who God made him to be. (I also went through the same thing when Anthony was diagnosed.)

Realizing that they were exactly who they were meant to be, allowed me to realize that I am right where I'm suppose to be. I have learned to look at things from a different point of view. I know that no matter how it looks to the outside, I am not the mom I wanted to be, I am the mom I was meant to be. I realize it's more than I could ever have imagined. My life is full, good and bad, I'm not always happy, but God's taught me the true meaning of being content. (That makes me very, very happy.)

I have become a very patient person but, by the end of the day, I have a very hard time giving my boys the "me" they need. I am so grateful that my husband gets home from work and takes over (so to speak)... as much as the boys let him anyway. By that time I have a very hard time not raising my voice, or sending them to their room, just for being who they are. It's when I need my time out.

Once I'm able to have a little time to myself (usually during the time daddy takes them for a walk, or gives them a bath) I can replenish my "patience" tank. Then I can once again give them what they need most at the time, me.

From a mother's heart - once I realized what my kiddos need most is me, I realized that I'm who I'm suppose to be. I'm right where I'm supposed to be too. What about you?
God Bless

Spring Fever... Already?

Spring fever - that time of year when all you can think about is being somewhere else. Not at school, or work or where you are currently. Just somewhere else. When most stereotypical people, at least, have more of a tendency to lose track of what they're doing, when thoughts turn to being able to do what you want - to daydream of somewhere other than where you are.

Spring time, my favorite season of the year. The time when everything that's been asleep during the winter wakes up. New life springs forth, usually starts in... March??? - usually.  Here in California it's only January and we've had temperatures in the upper 60's and lower 70's already. It's like we just barely started winter and spring is trying to move in already. We are in dire need of rain, but until it comes... spring fever has already hit. With or without autism related disorders in the household... spring fever hits the family.

First thing in the morning it's in the low to mid 40's, which means long sleeve shirts. Long sleeve shirts (for us) means - chewing opportunity.  The boys both have the "chewing" need... one of the biggest downsides to this (aside from them being 6 and chewing on their shirt and anything else they get hold of) is that long sleeve shirts are one of the first things they opt to chew on - sleeves, collar, etc. We use "chewies", which help, but someone has to constantly remind them to use 'em.

By the time the afternoon rolls around the temperature is around the upper 50's and lower 60's. The sun is generally shining, making it look warmer than it is. Around 3 - 4 o'clock the temperature is as hot as it'll get for the day. At this point the boys are working on applied behavior analysis (ABA) and you can tell that the sun outside is just calling to them to go outside. By the time ABA is over, the temperature is starting to drop again... but they still want outside.

For those with kiddos on the spectrum, you know how hard it can be to "redirect" your little one from certain things. No matter what you try, they will continue to be focused on that "item" until they can get to do it. For us, it's outside. It doesn't matter what time of day, what the temperature or the weather. It is a must to go outside at least once a day.

For the boys, going outside seems like what spring fever is to me. You can see it in their eyes when they look outside, they'd rather be out there than anywhere else. You can see the freedom in their eyes... I wouldn't change it for the world.

From a mother's heart - Spring fever... Rebirth... Time to dream / daydream... A chance to see things through new eyes, hopefully. Enjoy your springtime, whenever it comes.
God Bless!

Non Verbal & Not Feeling Well

Monday I had to pick up Anthony from school because he wasn't feeling well. Let's just say his stomach wasn't cooperating with him. I realized that one of the worst parts of being the parent of an autistic kiddo with limited speech is they don't have the ability to "tell" you how they are feeling. That is so frustrating for me, I can only imagine how frustrating it is for him. It breaks my heart to see him not feeling well and it's even worse when you add frustration.

When I picked up Daniel, he was just starting to act like he didn't feel quite right. Sure enough, a little bit later he had a "stomach" issue also. I was so grateful that by the time they went to bed they both seemed to be feeling better. Having kiddos with autism is challenging, having kiddos with little to no verbal skills is hard, having kiddos with both... let's just say - there are good days and there are bad days.

Due to their lack of verbal skills, working with the boys every day is a must when it comes to trying to get them to talk. Daniel has virtually no language, he's great at "verbal imitation" when he's "on" - or having a good day. Having Applied Behavior Analysis (ABA) therapy 5 days a week helps; being in an autistic classroom helps too; and then everyone who walks through the door also tries to get him to talk.

Anthony has more verbal skills than Daniel, but still doesn't carry on any type of conversation (at least not at this point). ABA has helped him with "verbal imitation", and school works on it as well. Like with Daniel, everyone who comes in the house also tries to get him to use his words. The interesting part is getting them to comply and speak. Usually we have to give them some type of motivator, or something to work for. The hard part will be to get them to talk without the motivator.

One of the most heard phrases around our home (other than "look at me") is "use your words". The boys almost seem to roll their eyes when we say that, but they know that we are not going to let them skate by. That's the worst thing we could do. Kiddos on the spectrum must be constantly reminded, or coached, to do what they need to do. At least until it becomes engrained in them. This goes for almost every aspect of their life, at least in our home. Failure to be consistent is a total disservice to them.

From a mother's heart - It's so easy to take speech for granted. Have a conversation with your kiddos, family member and friends today... enjoy whatever form of communication you use.
God Bless!

Welcome 2014...

Every year, at some point within the month of December or January, John Lennon's song - Happy Xmas comes to mind. These words in particular...

So this is Xmas
And what have you done
Another year over
And a new one just begun

This year it's made me re-evaluate the way I've been writing this blog. I've thought that maybe it could be a little more "this" or a little less "that". I'm going to try to experiment, so please let me know if you like - or dislike - something. It's all about learning and sharing.

Having twins on the autism spectrum makes our lives extremely... interesting. Because of our, interesting life... I've been on a fact finding mission for the last 5 years. Facts that have led me to more information, information that has led to new questions.

Unlike the flu that will affect most everyone in the same way, autism is a very individual and personal disorder. I am still amazed at how many people don't know what autism is. They've at least heard the word autism, (which is good) but still don't understand what it is (which is bad). I've even heard someone say - what's the big deal... just another special interest... all kids have issues. WHAT?!  While the it's true that all kids have issues, many can be worked through, cured or managed. Autism can not be cured, managed or "worked through" - it must be "worked with" on a daily basis.

Most kiddos with autism, must learn and re-learn almost everything they do. It can takes years to get a child with autism to be able to function well enough for them to be able to fit into what society calls acceptable. People with autism spectrum disorder (ASD) have to learn to "redirect" what they see as normal behavior.

This year I hope to give a bigger glimpse into the daily life for us, and hopefully show others a little of what autism families go through. Though autistic kiddos all have individual issues, they have similar behaviors that many families will deal with on a daily basis.

From a mother's heart - Happy New Year!    (a third of the way into January)

Christmas 2013

Our Christmas' past have been, well... educational. Like all parents, we live and learn... as parents of kiddos ASD* we are in a constant state of re-learning. Our boys are globally delayed, and at different "levels" on the spectrum, so every Christmas (so far) is a little like the first one. They remember more every year, but there isn't a lot of excitement on Christmas morning. At least not right from the start.

This year we got the boys involved in almost every aspect we could with the celebration of Christmas. By that I mean, for the first time they were actually in a place where they wanted to be involved. Anthony even wanted to make sure daddy realized he was doing good - not the picture where he "patted" dad's head and actually said "good job".

Last year they wanted to pull off the ornaments, so this year we only put the tree up (there are already lights on it which helps a lot). We also let them "touch" the tree this year, which actually seemed to work better than telling them to leave it alone every five minutes.

Christmas morning went well. We haven't reached the "rip the paper off as fast as possible" yet, but we get a little faster each year. This year it only took about 3-1/2 hours (and not because they got so many gifts) - because after unwrapping a couple of presents, they'd rather play with them or jump or do something else for a while.

Since the boys really aren't aware of what Christmas means (in terms of anticipating getting presents), they will sleep like it was any other night. I usually have the Christmas "jitters" for them. Daniel was the first out of the bedroom, and he noticed the presents right away, but wasn't really sure if he cared or not...

The boys got to open a present from my sister's family the night before, it was a Disney's Planes play tent...

which looks more like this now...

Anthony went right for a "piece" of the plane on his way to the tree...

After their morning routine... breakfast, jumping on the trampoline and climbing the jungle gym. They finally agreed to check out the presents. It took some encouraging - lots and lots of encouraging - but they finally started to get more and more interested unwrapping. Last year we learned that we couldn't have too many different types of paper and couldn't be overly enthusiastic. This year we learned that we can't wrap everything in the same paper either.

It's actually taken me a little over a week to be able to do this blog... as you can probably tell. So at this point - since it's the New Year now, we only have 355 days until this, next Christmas.

From a mother's heart - I hope you all had a wonderful Merry Christmas! If you don't celebrate Christmas, I hope you had a wonderful holiday season. May you be blessed in 2014.



*ASD (autism spectrum disorder)