Battle Scars

Virtually every parent and/or caregiver of a kiddo with ASD (autistic spectrum disorder) will have "battle scars". Scars that may be evident on the outside and the ones you will hardly ever see, the ones on the inside.  Many children on the spectrum will have a meltdown or episode that will include some sort of violence. They don't intentionally try to hurt someone else, they are simply reacting to some inner "sensory issue" or pain, they are trying to deal with it. I stumbled across a "video" of what it might be like for someone dealing with autism:

http://autismawarenesspage.com/what-does-it-feel-like-to-have-autism/#6X0tXUkf5R79LGxQ.01

Imagine dealing with the overload of sound. I also imagine it to be a similar process when it comes to vision - maybe seeing too many features at one time. What would you do? Like the "video" says, would you yell, scream and hit things or people, kick, etc. (paraphrase).

Some of the physical outlets for kiddos on the spectrum include: hitting, scratching, slapping, kicking, head banging and biting. This physical outlet is generally known as autism aggression. The external signs / scars are as you might expect include scratches, bruises, bite marks and missing hair.

You should be aware that these things can happen, and learn how to be prepared to catch it. There isn't always a warning. You can learn some of the "tells" from you kiddos or the kiddo(s) you take care of. You will probably have one or more of these things happen at least a few times before first. The best defense of course is to be prepared with the knowledge that it can happen, and not to "instinctively react" (which is the one of the hardest things for parents and caregivers). Just remember that these behaviors, are not done because the child "wants" to do it. But the good news is - many times these behaviors can usually be minimized in one way or other.

http://www.autismspeaks.org/sites/default/files/section_1.pdf

The internal scars are generally hidden quite well. Many parents of kiddos with autism feel they or their children will be treated differently, pitied or looked down on. I've seen this result in parents not wanting to tell anyone that there child is autistic. Feeling embarrassed when their kiddo has a meltdown in the store, or starts doing some type of "stimming" behavior in public.

Many parents (at least initially) will experience guilt, depression or insecurity for having a special needs child. They usually hide this, keeping it secret, suffering in private. (At least until they meet other parents in the same situation). The guilt that they could've caused it - passed it on through their DNA, did something wrong when the kiddo was a baby, missed early signs that they should've noticed sooner. The depression is from feeling sorry for themselves or feeling helpless. Feeling that they can't do anything to directly help their child to do things they should be able to do, that they aren't able to do enough to help them. Pitied or looked down on by other parents, being judged by others around them. Feeling like they are being punished (by God) for something they did.

The logical mind may tell us that it's not our fault that out child has autism. But the emotional side says it is, who else could be responsible. The reality (at least for us) is: God knows what He's doing. That we have been blessed with two beautiful boys who are on the spectrum. They have autism, but autism doesn't have them. They are autistic, but aren't any less than anyone else. Like someone with depression, the right treatment can make a huge difference. For someone who doesn't have use of their legs, the world opens up with a wheelchair.

Let your world open up, don't let the depression, guilt or any other negative emotion close you off to the world that your child needs you to be part of. Easier said than done? I know, I really do. You must realize and accept that your little one has autism. Feel guilty, depressed or any other emotion you need to. Then take a clue from your little one - move on as quickly as you can. It is not your fault. Yes, genetics may have played a part, environmental issues, you cannot change it. So, for the sake of you child, please - get over it.

Like it or not, you are your child's biggest and best advocate. You can open doors, that they are not able to alone.

From a mother's heart -  our motto is: learn what you can and share the information. Do your best and realize that your best is good enough. YOU ARE GOOD ENOUGH!  God Bless You!

"When you know better you do better." Maya Angelou.

More Signs

I wrote about Daniel's "signs of autism" in my previous blog. As we know, there are different symptoms (signs) kiddos show as their autism becomes develops. There are many symptoms that are shared by kiddos on the spectrum.  As parents of children with ASD (autism spectrum disorder) start meeting other parents, they will generally begin asking questions like: When did you realize your little one had autism? When was (s)he diagnosed? What type of "symptoms" or "signs" did you see?

Anthony on the other hand had anything but a common presentation. Daniel had a relatively full regression "overnight", however, we watched Anthony regress over the course of about a year a so. He ended up with some of the same losses as Daniel, except for speech, but his speech stop progressing as far as communication went.

Anthony had begun verbal imitation (repeating what was said to him) as early as 15 months. From then on he seemed to learn fairly quickly. He learned some basic shapes, colors, the sounds animals make, how to count from 1 - 10, putting shapes into a sorter. He was going up and down the stairs by himself (holding onto the wall or rail). He could identify different items in a book. He had even learned how to blow bubbles himself.

From what we had learned so far, we watched Anthony very carefully. We knew the signs, or so we thought... we didn't know about partial regression or that he might have signs that Daniel didn't...  after all they were (are) identical twins.

What we didn't learn until later was that he had been showing signs early on too. When he about 1 he would lay on the floor and bang his head, sometimes pretty hard. It didn't matter what we did, he would try to bang his head. If he was near the wall, he would use that. If you were holding him, he would "head bang" you, and it didn't matter who was holding him. It took several times before he learned how hard he could hit without actually hurting himself.Clue # 1.

http://www.babycenter.com/0_head-banging-why-it-happens-and-what-to-do-about-it_63575.bc?page=1

When Anthony was able to stand on his own and he either couldn't fall asleep or woke up in the middle of the night, he started falling onto his mattress. Not just falling, but allowing himself to fall - stiff bodied, face first onto the mattress. When he started walking at 14½ months it wasn't long before he started running. Then, he started running and diving head first onto the couch and into the armrest. We thought it was from some kind of aggression - it wasn't. Clue # 2.

There was a lot of data we'd read that said most regressions occurred around 2 years old. We thought when he was around 3 that we were "out of the woods'. We had noticed that he wasn't "chaining" words by then, so we had him assessed for speech issues. The school actually did a complete assessment and it showed that he had a "global" delay also. Clue # 3.

http://www.autismspeaks.org/news/news-item/ian-research-findings-regression

His speech and global delay made him eligible for a preschool SDC (special day class). He was enrolled and started right after that winter vacation. During the course of the next year we watched him systematically lose the things he had learned earlier. He would no longer identify pictures or shapes, no more counting. No more bubble blowing or animal sounds. Not one color was being identified. Since this happened slowly over time, no one we spoke to thought he had "enough symptoms" to be diagnosed with ASD. Clue # 4.

Anthony started to open and close any and all doors he could, even the cupboard doors weren't safe. He would open and close drawers several times when he could. Another clue for us was that Anthony had started to use the potty - without being asked if he had to go. Out of the blue he was letting us know that he was ready to use the bathroom. Within the course of a couple of weeks he was asking every time. Then it happened... one morning soon after, it was like that was gone too.

Then the flapping, jumping, spinning and loss of eye contact crept in (or maybe we hadn't noticed since we were seeing some new symptoms). We knew when he was 3 that he was starting to regress, but because it was slow, we were having trouble being able to get him into services. Finally with all of these "signs" we knew he would be diagnosed properly. It took two diagnosis' to finally get us the services he needed.

Now that he's in the 1st grade and an intensive autism program and has ABA services for a while after school, we are already seeing big differences. Don't get me wrong, he has a long way to go. Lots of frustration, long days and hard work ahead of him. But... we'll be with him wherever we're led to go. Advocating, learning, educating and encouraging him (and Daniel) to the best of our ability.

Please, watch your kiddos closely. Don't let denial get in the way if you have any concerns about autism. Don't keep your child from being assessed because they might be "labeled". The bottom line is helping your child as quickly as possible, because the earlier the services can begin, the better chance you'll have at being able to "reach" them.

From a mother's heart - we must be vigilant in watching out for our kiddos. Not only against harm from the "outside", but from the inside too. We cannot allow ourselves, or especially our children, to be in denial over something so serious... 1 in 50.

Signs

This last weekend was one of those quiet weekends (mostly), at one point the boys were napping. I watched them sleep for a moment and my mind went back to the first time I realized that something was "going on" with Daniel. Something just wasn't quite right. By 9 months we realized he had been slow reaching some milestones... but no worries according to the doctor, he was a boy after all. Around this time, I found out that most kiddos didn't like to be "swaddled" past 4 months old. Daniel was most peaceful when he was swaddled, and he had to be cuddled tightly to fall asleep. This would turn out to be clue #1.

Soon after he was 9 months old the episodes began. Slowly at first, they weren't every night, but once in a while. He would wake up crying uncontrollably. A few months later, about a year old - maybe a little older, the thrashing started, hitting, scratching, pinching and head butting. It took all my strength to hold him tight, and it had to be so tight that I thought I'd bruise or worse - break something. Clue #2.

Around 15 months I completed the questionnaire for his development. Luckily my sister had gone with me and helped me answer some questions realistically. I had not realized that Daniel wasn't speaking more than a few words. I saw Anthony using words (not really as many as he should have) and thought that Daniel was just saying a few less. Realistically he was using a lot less. Clue # 3.

About 16 or 17 months Daniel was assessed at our local regional center (they help facilitate services here). It showed that he was globally delayed. He needed speech and in home services through a local school program. Clue # 4.

That's when I began reading everything I could about the "symptoms" and learned about autism. My husband and I discussed it and both knew there was no question - Daniel had autism.

When Daniel was almost two he regressed - he lost his speech, eye contact, began stimming (self stimulating behaviors), having more meltdowns and episodes, he stopped pointing and many other things. We thank God that he didn't lose milestones at least.

From there we finally got the diagnosis of autism, which was bittersweet. We couldn't ignore it - it was real. We had to have the diagnosis to get the services. This opened the door to receiving ABA (applied behavior services) and a whole new world for our family.

I'll tell you about the "signs" of autism we saw with Anthony in the next blog. Like we all know now, we found out first hand that no two kiddos are the same when it comes to "developing" autism. (I chose "developing" on purpose because, to me autism is kind of like a Polaroid picture, it takes time for the whole picture to show up).

From a mother's heart - I wish everyone would learn about autism. Please share your experience with others, get the word out about the signs, it may help get a child diagnosed earlier and get services earlier, which is so important.

Ignorance is Not Bliss... For Those Around It

I've struggled with this for the past few days, I had decided not to address it, but I can't ignore it.

It's about the letter left for a mother in Canada with an autistic child. It was hateful, hurtful and showed absolutely no sign of compassion. I am deeply saddened that there are actually people filled with so much hatred and ignorance that they would even consider writing something like that. If you haven't heard about it by now, you can find the letter online at:

http://news.yahoo.com/blogs/dailybrew/ontario-police-aware-hateful-letter-telling-family-euthanize-171036930.html

Be prepared, it took me a few times to be able to read through it. I couldn't believe that someone would even consider writing the letter, let alone deliver it. Of course they signed it - one PO'd mother. I can't imagine the hatred that is takes to come up with something like that. I am generally a forgiving person and I try to put myself in someone else's shoes, but I have to admit in this case... I am at a loss.

That being said, I would like to return to a positive theme.

I believe that all children are capable of great things. Whether they have ASD (autism spectrum disorder), an intellectual disability, Down Syndrome or some other challenge that they face, they are Different Not Less!  These kiddos are more receptive to the world around them than anyone realizes. They see things in a unique way, a way that we can only hope to understand one day. So precious, inquisitive, bright eyed - to watch them makes me question - what do they see when they have that "look" in their eyes.

Listen when they sound like they are just "making noise", it took me a while to realize Daniel was singing songs at times. When they sound like they're talking but you can't quite make out what they're saying, they're trying to communicate but we don't understand their language. Remember that God only gives you what you can handle. You are a very special person to be blessed with a child with special needs - even though it doesn't always seem that way, I believe it is true. You're child could've been born to another family, one who didn't have patience. One who thought they were more of a burden than anything else. 

From a mother's heart - You are special, you have a special loved one, and you are loved!

The First Few Days of School

I'm back...

The end of last week we got to meet the boys new teacher for 1st grade. I was very surprised that it only took a few minutes in the new classroom for Anthony to figure out how things were laid out, and he had to explore. This was awesome, he usually assesses the surroundings, but stays near for a while. One the other hand, Daniel had to be held, he didn't allow me to put him down until we were almost ready to leave.

I was very skeptical about how the new school year would go. Kiddos with ASD (autism spectrum disorder) don't usually react well to change. Especially as big a change as this year is going to be. New school, new teacher, new peers and a longer school day. Also they will still have ABA after school. I was definitely expecting to have some type of meltdown or episode or even tantrum on the first day.

So... the boys started first grade yesterday. I know that they are much happier when they are in school. They need the routine, the structure and they love the activity. I was so surprised and happy to hear they did pretty well. For the last few years, the first day has been filled with intermittent meltdowns during the first 2 weeks. Not just our kiddos of course. I have great respect for the teachers and Instructional Aids that work with our kiddos with autism. They have so much patience and a great determination to help the  kiddos. There are times when I just get so overwhelmed with my two... I just want to scream. When a kiddo on the spectrum has a meltdown or episode, it is not usually a very easy thing to deal with. I get to the place where feel like I can't take another second of a meltdown, especially when one triggers the other. I can't imagine if more than 2 kiddos on the spectrum had meltdowns at the same time.

The first day of school when we mentioned that "we're going to school today"

This year they were all smiles when I got there to pick them up and I was 15 minutes later than I needed to be. They have definitely needed the intensive autism program, and I'm so glad they are finally in it. It's hard when it takes so long to get your kiddos into the program you knew they needed all along. But instead of dwelling, I'm so excited for them.

Day 2: They enjoyed it so much yesterday that both boys were all smiles and ready to go this morning. No hesitation. They even came home, had a 1/2 hour break and did ABA without skipping a beat. They were energized, and not just because of ADHD (attention deficit hyperactivity disorder).

Day 3: Again when the boys were getting ready for school and they had big smiles. They have totally caught me off guard with how they're handling it, and I couldn't be happier.

It's amazing how resilient our kiddos on the spectrum are. I was really expecting them to have issues with the change of routine, but to my amazement, they've shown me they have so much more ability to adapt than I ever thought. I'm actually excited for them and hoping for a great school year - with a lot of learning to help them grow.

From a mother's heart - I hope your kiddos have had a good first day of whatever "new" they are are trying.

"I'm in Here"

Like yin and yang, salt and pepper, ketchup and mustard... there are good days and bad days for everyone. They just seem to go together.

The parents, or caregivers, of a child with autism will generally have good, bad, ugly and exceptional moments - all in the course of a day, usually everyday. Like the parents of neurotypical kiddos, we face the same struggles: trying to help our kiddos grow, brush teeth, potty train, eat with cutlery, etc. The only difference I've found is that everything seems 100 times harder when you're also trying to communicate with your babe and they don't seem understand what it is you're doing.

When I started writing this post, I was researching information on a different topic all together, and ran across a song "I'm in Here." I think this couple does a wonderful job getting the point of autism across to others. To help them see what we see, what our kiddos on the spectrum regularly go through. I manage a Facebook page: Autism Parents - USA (shameless plug) and I had to post it there as well. Let's see if we can get as many people as possible to see it. I found it on the autism awareness page. Grab your tissues if you live with or know a person with ASD (Autism Spectrum Disorder), it will hit you in the stomach and in the heart.

http://autismawarenesspage.com/im-in-here-the-anthem-for-autism/?utm_source=social&utm_medium=autaware&utm_term=20130809&utm_campaign=im-in-here-the-anthem-for-autism

From a mother's heart - I pray for all those out there living with an ASD, may we find a cure sooner than later. That the world we live in would learn to be understanding and caring of those who are living with it now.

Preparing For School

Time to take a breath, sit down for a few moments and share. We've been busy with the usual... school is starting soon routine. So sorry for not writing before now.

With summer break coming to an end, it is... a time of sadness for some children, apprehension for some parents (with kiddos going to school for the first time), and the relief of parents who are seasoned veterans of the whole school routine. Then there are the parents, like us... of kiddos with autism. There are certainly pros and cons to the new school year, beginning a new routine. One pro is, in California (at least), the school system we are in has a great special education program. The con to this, each school has a different type of program(s). They are at a traditional school with special education classes. For example, last year the boys were in the PALS program (Program for the Acquisition of Language and Social skills) at one school. A good program, but only for preschool and kindergarten kiddos.

This year the boys will be in an intensive autism program, at a new school. They will (unfortunately) be going to a new school, with a new teacher, new peers, a new schedule and a longer school day than they've ever had before. The first year they were in an SDC (Special Day Class) which was for 3 hours a day. Then they went into the PALS program which was 5 hours a day. Now they will be going to school for 7 hours 4 days a week and 5 hours 1 day a week. On top of that is the ABA (Autism Behavior Analysis) which goes anywhere from 1-1/2 hours to 3 hours a day, Monday through Friday (depending on what they can handle).

It's going to be a very, very, very busy and long day for the boys. This year will undoubtedly be their biggest challenge so far. The next week will be extremely busy, like many households with kiddos getting ready for school. The last minute appointments for school physicals, medicine follow-ups, school shopping and of course shopping for the school supplies you have to get every year. For us, the one thing we have to add is the "special" food items that the boys "must have" for their snacks and lunches.

The list, like many homes can go on and on, and just when you think you're ready... something else comes up. But, you smile and roll with it because you know it's all to help your little ones grow. It will be interesting to see how things go this year. I'll admit, I am little quite apprehensive about how it will go. Will I get a call because one or both boys have had a meltdown and can't be controlled? Will we have to set up a behavior action plan because the boys have become physical and could hurt themselves, or someone else? What will the ASD (Autism Spectrum Disorder) reveal to us this year?

The wonderful world of the autism parent. Believe it or not, I say that with very minimal sarcasm. You see, every day is a new learning experience, not only for them but for us too. Our boys have shown us that there are so many new things to learn. Things that we think we already know about, but can now see it in a completely different. We have to learn new ways of doing things, seeing things and new ways of organizing things too.

I LOVE THIS!

The world of those on the spectrum and for those who love them can have a magical and beautiful flow all it's own. Like the tide, the days seconds ebb and flow.  Not always pleasant of course, but if you can be quiet and open - patient -you'll probably learn something. I've learned so many things, but one I'm most thankful for is the gift to see that a lot of things in this life really don't matter. Who likes me, who doesn't - who cares, take it or leave it. When are the bills due, how much housework needs to be done at this moment, though important - not more important that taking the time to try to connect with my babes. Those things will get done, even though sometimes at the last minute.

I totally understand the old statement "Stop and smell the roses" I really get it! It now takes on a whole new meaning. I believe I truly understand what the author meant when he penned the words.

I just wish I could see what he sees.

From a mother's heart - I hope that everyone, everywhere will be ready for this school year. May everyone be safe and learn, learn, learn.
God Bless!

Buying Gifts

A very dear friend sent our boys a gift box a few weeks ago. She sent a few different things that would have been great for children their age, at least stereotypical children. Admittedly she didn't really have a clue about what to get for an autistic child. This seems to be true for many, many people. Just like any child, you need to find out if they have a preference to certain toys. Most kiddos on the spectrum seem to have their own specific toys they are drawn to and depending on their specific needs, you can't always go by the recommended age group.

Here are some basic ideas:

A lot of kiddos with ASD (autism spectrum disorder) like cars or anything with wheels or pieces that go round and round.

Another thing is anything with lights and/or sound (however, make sure there are no sensitivities to either of these before buying them):

Some kiddos need different stimulation, for instance: oral (chewies); vibration (constant movement - vibrating pillow); then there's fragrance (some kiddos have different scents that calm them).

Another group of items are things with different textures. For instance, some kiddos love soft, satiny cloth they can rub against their skin. Other kiddos may not like anything that is too soft. There are many varieties of textural input, and it's best to check with the parents for preferences.

I hope these ideas are helpful for you and give you some examples of different gifts available for those on the spectrum.

From a mother's heart to yours - don't forget to ask the parent or caregiver what the person seems to  like. Don't worry about getting something they already have, sometimes it's good to have more than one of the same item around.