A Few Helpful Resources

While I was waiting for the boys to get out of class the other day, I had a conversation with some of the other moms. A program established for placing dogs with autistic kiddos to help them. It reminded me of an article I stumbled across a few years ago, so I wanted to share. A non-profit agency called 4 Paws For Ability. They work with families to provide dogs to children with different forms of disorders and/or disabilities. They provide dogs that are trained specifically for what the child needs, and they provide them for children worldwide.

http://4pawsforability.org/autism-assistance-dog/

I love the fact that this is available for families. They train the dogs with the child so that they can create a bond and they work with the family for 2 week to teach them how to work with the dog. They have programs for service dogs to assist with hearing impaired, mobility issues, seizures, diabetics, autism, etc. It is quite costly to train the dog and place the dog with a family at $ 22,000, but, the families work to fund raise $ 13,000 and will receive the dog (technically) for free (fundraising options are provided, and the money raised is tax deductible). This organization will work with very young children they have no age limit for children. For more information I encourage you to check out their website.

Another resource for kiddos with ASD, is the iPad or iPod, (I know the androids have apps too, but I am not familiar with them). There are many applications that have been introduced for autism. The iTunes apps are generally free during April, which is Autism Awareness month. (Not all apps are free, but a lot are). There are some great ABA apps which work on the opposites, colors, receptive commands, and many others. One of my boys' favorite apps to play with is the Autism Xpress (the last pic below). It make the sounds for the emotion or expression. They love it and have for the past few years.

For our son that is really not showing signs of being verbal - except with verbal imitation - we are in the process of putting together the Proloquo2Go to work specifically for him. It's a great program to allow him to speak through the iPad. You can create your own folders with your own pictures to allow him/her to use the program as they need. The app currently sells for $ 189.00 USD and can be put onto each apple device connected to your account.

There are so many places that now sell items for anyone with ASD. Everything from helping with sensory issues, OT, oral motor, the list goes on and on. My current favorite is:
    http://www.nationalautismresources.com/  

some others I have found include:     http://www.sensoryuniversity.com/     (which also sells some items on Amazon),     http://www.especialneeds.com/home.php     (I recently found this one, no experience with them yet).     There are many others as well, just typing "autism products" into the search bar brings up several options. I write about the things I have experienced, learned first hand, or researched. I try not to endorse any particular product or company, I will "talk up" a company that I have had good dealings with. So, when I find something I find informative or a "good deal", I will try to include it in this blog.

From a mother's heart - I hope you find this helpful. Let me know.  :)

Reaction Time

How many times have you said something to a little one only to think it's taking forever for them to answer or do what you've asked? We learned through special education, articles and ABA that you should wait no less than 5 seconds before expecting any response. It takes at least 5 seconds for the typical child to "take in" what they've been asked, process and answer the question. It generally takes a bit longer for someone with an ASD. Now, you may not get the right answer, but at least you should receive an answer and know you were heard. The same goes for when you ask your child to do something. I've watched for over two years while my boys have done ABA (also a special education class) and noticed that depending on the circumstances, they may take more than 5 seconds to respond. Now, I don't know the reason always, but I have figured out that there is always a reason as to why.

We have found that even though they are autistic and they have days when they just aren't "available" for learning, there are also other reasons why they may take longer to respond. Our boys never went through the "terrible twos" but... they have been going through something very similar lately. I realize that this stage is simply the need to "figure" things out on their own, test their boundaries, etc. It doesn't make things any easier for a parent when a little one goes through that stage. This causes them to test  anyone trying to work with them, for example, they will see how far they can go without responding. They will see if they can get the person working with them to do the work for them.

Learning new ways to get them to do what you are requesting just causes us to be more "creative" in order to deal with the issues. I have found by watching the boys doing their ABA that there are days when they are (now, ready for this?) purposely not doing what they are suppose to do. In the beginning ABA and special education use a technique called "error-less learning" when the instructor will "help" the child make the correct choice. They will tap the correct answer, use hand over hand to guide or say the verbal answer for them to copy. This builds self-esteem, helps the child want to learn and they receive "praise" and/or a "preferred item" they have worked for. The only problem I've noticed with my boys is that they have figured out (like most kiddos will) that if they don't feel like working, they're more than happy to sit there and do nothing... letting the instructor do the work. Kiddos are smarter than we give them credit for and we have to learn to be smarter or "crafty" in order to get the upper hand, so-to-speak.

Together with our ABA team, we have learned that by "waiting out" the boys when asking them to do something will help to get them to respond more often. Instead of asking them something and counting to five before giving them the answer, we've started waiting ten seconds or a little longer for the answer (or action). They start realizing that they are being waited out and get bored, or realize they aren't going to have it done for them. Then, WOW, they start working again. It doesn't work every time, but it does help. They are so proud of themselves when they know they've done too. You can usually see it in their face, eyes or posture.

We have figured out that some of the other reasons our boys will avoid working are, but not limited to: not feeling well, over tired, hungry, upset, doesn't "click" with the person they're working with or they just want to be outside. I realize that many typical kiddos go through similar things, the only difference I've seen for myself is that autistic kiddos in particular seem to need more time to understand what's being asked of them. They learn like typical kids that there are certain things they can get away with if they don't "feel" like doing something. Spectrum kiddos just need a little more time.

From a mother's heart... we could all use a little more reaction time and patience.

You Just Made My Day!

I love those days when, as a parent of autistic boys, they can do something that - at least for a moment, makes you forget your kiddo(s) have autism. Have you ever had one of those days when almost nothing can get you down. Nothing seems to go wrong. Everything is coming up rainbows, as "they" say. Admittedly not the whole day, beautiful, precious moments at a time. Sometimes, if you're lucky, many moments at a time.

During those moments, your kiddo looks at you in a certain way - your heart melts and you see this kiddo - really see him/her. The real one, the one that seems to be trapped inside his/her own body, world. Either kiddo that you've either already met, and they've regressed, or the one that has not emerged before. They do something out of the ordinary (for them). That glance that looks you in the eye and really sees you, connects with you, looking at you - not looking through you. The times they seem to laugh at something funny, that you actually get and laugh too. The play time that is appropriate - not just spinning endlessly or chewing on every toy within their reach.

These are the times you scoop your little one up, hug and kiss them, and don't want to let go.That is the moment you truly realize these times are more precious than you previously thought. The brain rushes to figure out the best possible way to enjoy the moment. You grab the camera, you try to communicate, a hundred questions rush to mind. It's not like a non-verbal child is just going to start talking and recite the constitution or anything. It is the hope they will repeat "hi, mommy" when you say "hi" or even, should we hope... "I love you!" The truth is that the look, the hug, snuggle or whatever it is your child gives you that lets you know it's them reaching out... That's the "you just made my day" moment.

From a mother's heart - May something happen today that, makes your day.

Lost in Translation

One thing every parent knows, whether they realize what it's called or not, is manding. Manding is just a fancy way of saying requesting. For many children on the autism spectrum requesting seems to be a foreign concept. Not like typical kiddos who simply need to be taught, kiddos with ASD generally need to be taught over and over and over before they get it. They know they want something, They know "what" they want, but they have a hard time learning how to get it across to others. It gets lost somewhere in the translation. Most kiddos who on the spectrum get frustrated easily enough because of the barriers they face. This is of course from my own observation, my own reading, and not from any "noted" source at this time. I'm sure there is proper research out there on this particular topic, but I haven't stumbled on yet, so for now I'll use the information I have.

The other major issue I've noticed with kiddos on the spectrum is the lack of understanding emotions. They also have to be taught what facial expressions are and mean. There is no concept of how someone else feels. They also seem to have a hard time learning to connect their emotions with the technical term for the emotion. In ABA the kiddos will be (generally) be taught with emotions with flash or picture cards. Usually it starts out with two pictures of an emotion (we'll say - happy): they are taught to "put with" one emotion card with it's match; next they are to "give me" the emotion card requested; then they will begin actual emotions on real people. In the beginning, asking them what they are feeling is basically an act in futility (for them as well as you), it's like you're speaking a foreign language. They generally are trying to understand, but again, it's lost in translation.

Anytime you are dealing with children on the spectrum, like typical children, you must have patience. You have to realize that it may take a hundred repetitions for a child to get something you are trying to teach them. Just like when they are trying to communicate with you and get frustrated, they will get just as frustrated when your words don't make sense to them. Just try to keep your cool and realize that they aren't trying to be difficult or trying - they truly are not making the connection.

I realized recently that everyone has that moment when they are trying to explain something to someone else, and the words... just... won't... come to you. No matter what, you just can't seem to get your thought across to the other person. You are having, what we call in our family, a "brain fart". That realization was an epiphany for me. Those are definitely the times, when trying to connect with another person, when no matter how hard you try... something gets "lost in translation".

From a mother's heart - take time to breath, gather your thoughts, and be patient.

Side Tracked

It's been one of those days... The one where you start to do one thing and then before you finish it, you're pulled away to do something else. If you're lucky, you'll get back to what you were doing to begin with. But, if you are at all like me, you'll only remember once you've been side tracked again several times. Then of course, you have several things on the "back burner" waiting for you to get back to them.

Start washing dishes... Gotta pick up a spill. Paying bills... Need to change a diaper. Cleaning bathroom... Someone needs attention. Truth be told, at least I am not usually pulled away from anything that's super important. Still, it can get annoying. We all have those days when we've put things off for so long that we need to get back to them. I've found that it happens twice as much now with ASD in the household than it ever did before. And... that's ok. How do I say no to these faces (if I don't have to that is):

My boys have taught me so much since they were diagnosed with Autism. They have made me realize there is so much more to life than the "things" we need to do. The dishes will still be there until... the bills aren't going anywhere and the bathroom, well the bathroom... need I say more. All of those things will still be there when I've taken care of the two most precious blessings I've ever received.

Some of what I've learned is:   it's ok to be upset - but to let it go as soon as possible. Move on with being happy.   Live in the moment .   Look at things from a child's perspective - it brings new meaning each time.    Belly laugh whenever you have the chance.    Don't put too much on your plate, if you do, walk away and come back to it later. (Figuratively and realistically.)

It really does make a difference on how you look at things. You can find bad in anything, but how much better to find the good. So, choose to look at the "side tracked" moments as a chance to see something different.

From a mother's heart - Happy Valentine's Day.

Congratulations, Your Child Has Autism...

In talking to other parents, I am still completely amazed just how many receive an ASD diagnosis only to be ushered out the door with no information on "what" to do or "where" to go from there. Most doctors will take the time to ask you if you have any questions, and would seem to be more than happy to answer them for you. But really... who thinks of the important questions when they've just been there child has autism. One parent I know put it this way: "Congratulations, your child has autism. Have a nice day." Most doctors we've heard about don't even offer to explain what autism is, it's like they just expect that the parent already knows what it is. To have some idea of what they are to do next. I have made up a card for anyone I come across who asks what autism is:

Once the diagnosis has been made the first thing we do as parents, once we've had a chance to "digest" and reflect on what we've been told, is to go on a fact finding mission. We search the library, the internet - anywhere we can to find answers. Then we begin the search to figure out what autism is, what can we expect with it, where we can go to get services that will help our kiddos. I can't believe some of the stories I've heard from people who have not been directed to someone who can help. So... once you've researched enough (for the time being) I recommend talking with you personal pediatrician / doctor. Ask about the services (s)he knows about - they generally have an idea of services or who to speak with to find services. Next talk to your local school district, ask for the special education specialist or coordinator. They should be able to guide you.

A few resources I have found invaluable are:   

http://www.autismsource.org/      http://www.autismspeaks.org/     http://www.autism-society.org/     http://autism.about.com/     http://www.autism.com/

These are certainly not all resources, but I've found these in particular to be really good ones. The Mayo Clinic, the NIH and UC Davis are constantly updating information on autism spectrum disorders. They are putting out articles all the time on information they are learning.

I have also created a facebook page called Autism Parents - USA      http://www.facebook.com/AutismParentsUsa      in hopes of sharing information. It's still in it's beginning stages, so I am still looking for input from other parents also. My hope is that it will be a place for us learn new things or remind us of old things.

Remember, all of us with children on the spectrum are not alone, we just need to communicate with each other. Our biggest resource is other families going through the same thing. We are a big family joined by a diagnosis of autism.

From a mother's heart - share your experience with others.

Not What I Thought...

So sorry for the delay in posting... We have just finished a week of busy and sickness. Boys are all better and finally went back to school today.

I ordered what I expected to be the next size up for a kiddie table. The one currently being used by one of our boys is getting a bit small. After all, kiddos grow and wooden tables don't. So anyway, we receive the new table - and of course it's "assembly required". As I am preparing to pull all the parts out of the box, I start to realize that the table is about the same size as the current table in use. I check it out and sure enough, it's the exact same size. Well, I recheck Amazon to make sure the dimensions for the table I ordered are indeed bigger than the one received. Because, after all,  it can't be my mistake... right? I search the order and item description and sure enough, the height I saw was... for the chair, not the table. Well, now I have to return the table and order a new one.

I'll be the first to admit that I don't see things like most people. I have a tendency to get off track by following my own thoughts. I will think of one thing, that leads to another, then another, then another. I do realize a lot of people do this, however, I have been told that I have tendency to easily go "off track".  For example: this table and chair order led me to » check description of order » returning » reordering » will it be the right this time » how many people order wrong » X » X » X » to having kiddos, and expecting things to turn out a certain way. So now I'm on the topic (in my mind) of how we - who want children - think about how it will (should) be. Most people expect things to go relatively smooth, realistic enough to know that there will be a few issues here or there. Then, we have those dreams of having the "best baby" ever. We expect things to go well or at least be manageable.

With the first baby, we are a little scared - mostly because of the "will I be a good parent" questions. Not because we think there will be issues with our kiddos. It doesn't ever go the way we "expect". Maybe at first we think that all the other parents were just exaggerating about how exhausting or difficult it is. Then reality sets in after a few weeks of sleepless nights. Once routine is established and we are "back on track", we are on our way to becoming the "professional" parents we knew we would be. (Even though we are making it up as we go along). Right???

Nothing in this life is how we "thought" it would be, or "think" it should be and we learn that as we grow. We all have preconceived notions on how something should be and it generally turns out quite different. It's even more certain when dealing with children. We all want that perfect family but the truth is, there is NO SUCH THING! There are so many types of issues that affect us all now, it's virtually impossible to have a family without some type of issue, disorder, illness, disease, dilemma, etc.

Once we get past our ideas of how we think things could be; lose all expectations of what should be; debunk all notions of what will be, we can begin to accept the way things are. We can then learn to realize that just because things are not what I thought they would be, doesn't mean they are less than or not as good as. Whether you dealing with: autism, ADD, ADHD, diabetes, mental health issues, or any kind of special needs in your family, learn how to move forward. That's the only way I think we can learn to be content and comfortable knowing that there is no place like home, sweet home.

From a mother's heart - make your home a place you want to be.