10 Things To Know About Your ASD Child

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child -- a child with autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2. My sensory perceptions are disordered. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself.

3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).

It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Please just tell me “It’s raining very hard.” Idioms, puns, nuances, double entendres and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8. Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation.

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented

10. If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people

Ashlie's Note: I personally enjoyed #4: "Don't tell me something is a piece of cake when there is no dessert in sight." Ha ha ha! This is so true for my son. The other day he was saying "uh-oh!, uh-oh" and I responded with "uh-oh spaghetti O's!!" He gave me a puzzled look and then asked for Pasta LOL =)

Top 3 Causes of Death Amongst Autistic Children

1) Wandering

2) Jumping from Heights/Falling

3) Drowning

Meet Our Family!

This is us =) We are from FL, met there and have now been married for a little over 5 years. We just moved our family from UT (TERRIBLE state for Autism resources-in case you were wondering ;) to the great State of Missouri. We found out that Utah was #48 in the country for the WORST Autism resources so after spending 7-8 months doing research we saw Missouri ranked #3 in the country for the best resources and services. After being here for 6 months, I have to say I agree! My kids have jumped LEAPS since they have been here.

My husband is going to school for Engineering (1.5 years left!) and I attended BYU for Nursing. We are members of the LDS Church which is why we feel like everything kind of happens for reasons we may not be aware of right away. You know, I have those days where I literally fall into bed at night...and then 15 minutes later our baby wakes up to be fed ;) It's exhausting being a mother of children with Autism. There's no shame in admitting that and it doesn't mean that you don't love your children. I've come to the realization that I don't have to look like I've got it together all the time. There's days where I've got a baby sleeping in one arm, I'm pulling a peanut butter sandwich out of my daughters belly button with the other while yelling at my son to stop playing in the dog food and add a puppy chi-weenie to all of that! It's my strong opinion that Heavenly Father only blesses strong, motivated, loving, patient parents with these children. You may not personally feel that way about yourself but as someone looking in, trust me you are =) Every parent I have every met with an Autistic child has been amazing. I often tell my husband that we were given these children because HF knew we would fight for their needs and that we're an awesome family! =)

This is our little stud muffin. He is 4 and has been diagnosed with Moderate Autism and ADHD. If you clicked on the "Our Diagnosis Story" tab then you know that we started to notice changes with him when he turned 18 mos. Every Autism Specialist we have spoken to has said that that is the KEY age that parents will really start to notice the changes in their child. They describe it as "They were completely fine and then one day they just started regressing."

This is our sweet little girl. She is 3. She has been diagnosed with Severe Autism and Mild Mental Retardation meaning she is much higher on the Spectrum than our son is.

 This is our newest little guy. He is our little bundle of joy! Always a happy kiddo. He is 8 months old. Spending time with him can turn anyone's bad day good =)

Blogs For Teaching Children With Autism

Here's a list of websites I have put together for you whether your interests are Home Schooling or just General. I will frequently be adding to the list:

The Verbal Behavior Approach

Free Homeschooling 101

Brighton Park-Homeschooling Special Needs Children

Does your school have a secret history of abusing disabled children? Find out here

http://www.examiner.com/special-education-in-national/does-your-school-have-a-secret-history-of-abusing-disabled-children-find-out-here

In this clip you will see a couple of things:

Block Stacking: I have these Decor blocks set up and the kids like to take them down and stack them. I saw a similar clip like this and a user commented something along the lines that if you stick a child in a room with blocks he's going to stack them and then we label the child Autistic. One thing that people don't understand is that these children will do this ONE activity ALL day over and over and over again if you don't intervene and draw their attention to something else. Once I stopped recording I had to draw my sons attention to something else or we would've kept stacking.

Nonverbal Communication: My daughters Autism is much more advanced than my sons. My son is VERY high functioning. You'll hear her noises that she makes. She kind of has her own language, she doesn't speak at all. You'll see at one point she brings me her sippy cup and puts it in my hand. That's how she communicates with us.

Lack of Eye Contact: You'll see my daughter doesn't make eye contact and if she does it's for a split second.

http://www.youtube.com/watch?v=CH3_zItvQkU&feature=youtu.be

My Note to You: **I only post these clips to make it easier for other parents to recognize certain behaviors. However I hope that ALL of the parents that frequent this blog know that once you are set up with services, try to then direct your attention to cultivating their strengths and focus LESS on their weaknesses and what makes them unique from other children. As the wonderful Poem says "If you're busy thinking about how you were supposed to go to Italy, you will miss out on the very special Blessings of being in Holland." **

Our Diagnosis Story

You never forget the day you get the diagnosis.

Around the time our son turned 18 months my husband and I started to notice changes in him, regression in his motor skills. Here was a little boy that had started walking AND talking by 8 months of age, had a growing vocabulary and an extraordinary memory. Then one day he started running on his tip-toes with his head turned side-ways instead of the direction he was going in, adapted certain security toys that he had to take everywhere with him, bathroom, dinner, errands and to bed. He started to not like certain textures (stickers), hated for his hands to be dirty or wet. He was lining up his toys versus playing with them. We started to notice he couldn't say words that he used to say all the time, his vocabulary was practically cut in 1/2, he could no longer walk down the stairs (something that we had to re-teach him at a later age) and he was having trouble feeding himself with utensils-something that he had already knew how to do. Not to mention his social skills with other children just weren't there. People would tell me when I suggested I thought he was showing symptoms that I should "wait and see" (the ABSOLUTE WORST thing you can do for a child with ASD because the SOONER you get them help, the more chance they have of reaching a high functioning outcome.)

After almost a year my husband and I were able to find the right people to evaluate our son for Autism. We moved and fortunate for us where we moved to had an Early Intervention Program that serviced the county we lived in. They do a series of evaluations for free.

The program we were set up with had a team of specialists that came out to our home 2-3 times a week for 3 hour visits over a month’s period. Our kids didn’t even know they were being evaluated. As far as they knew they were just playing with new toys and occasionally answering a question. As the testing progressed I could tell it wasn’t going well.

I tried to keep my emotional composure as she began to explain to me that not just one of our children had Autism but both of them did. I had NO idea that she was evaluating my daughter as well. We had suspicions with our son as we would watch how he played and interacted with other children. People would frequently tell me “Oh he’s fine. He’s just a boy!” or that he just had an abundance of energy but I always felt it was something more. Our daughter on the other hand was almost 2 and still didn't speak a word, wouldn't make eye contact with anyone nor respond to her name despite her hearing being great. We were so focused on the issues we were having with our son that we completely over looked our daughter’s lack of development. I had always made excuses that she was just a late bloomer.

At first I started to do what I think any parent would do and that was wonder if maybe it was something I had done wrong during my pregnancies. However we were told that studies are starting to show that Autism is around 90% DNA related (genetic). It doesn’t run in my family but it is common on both sides of my husband's family. It wasn’t Vaccines because I was that parent that refused them out of fear of Autism. As my thoughts began to progress down this path they were all somehow pushed out of my mind and I was left with only one: It didn’t matter what the reason or cause because things were going to be how Heavenly Father intended them to be.

When the Specialist left I sat down on the couch left with my thoughts and began to watch my children play. I couldn’t help but feel a sudden abundance of love and appreciation for them fill my heart. I think I knew in that moment as my son looked over and smiled at me that they aren’t just my children but Heavenly Father’s as well and He has trusted my husband and I with the sacred duty of loving them and caring for them.

I put my kids down for their nap and went outside and waited on the steps for my husband to get home from work. He pulled up in the drive way and without saying a word he sat down beside me and put his arm around me. As most parents that have been in our place, we took the news hard at first. Me more so than my husband, I think I cried for about 3 days. My husband and I agreed that we would allow ourselves 1 week to grieve and after that there would be no more grieving that we would then take this head on =)

I later called my family and my mom’s response was comforting after I told her. She said “You guys aren’t on your own. We’re going to work through and handle this together as a family.” At first we were sad because you have this idea about how your children are going to be and the things you will get to do with them like sports, marry them off, send them to college, shopping, finger painting, dance and family vacations. Then all of it comes to a halt in a moment. But every time I began to feel sad it was like a blanket of comfort was thrown over me. It felt as if Heavenly Father was present on each occasion. After some time went by and all the crying was done I realized that my children will still get to do all of these things, that we would just have to take a different route than other parents. I think sometimes parents will get this diagnosis and feel like all is lost and then put it on the back burner and not seek the help their children so desperately need to reach their full potential. They ignore it and think "it will work itself out." But that's not the case and all is not lost.

My husband and I have a good strong marriage and a wonderful relationship with each other. We are currently in the process of moving to another state to get the therapy they need. So having a strong marriage, love and patience in our home and getting them the help they need is the absolute best thing we can do for them. Right now we live in Utah <---#48 worst US State for Autism resources. So for the past 2 months we have been making a zillion phone calls to different school districts across the country, Autism research groups, talking to parents of ASD children through out the country, calling different insurance providers and as of right now we narrowed down our search to the great state of MISSOURI. There my husband will be able to finish his degree, my children will have insurance (our insurance provider dropped both of our kids for being Autistic-too expensive for them, cheap state), my husbands job is also going to transfer him and our kids will get the ABA therapy that they need. Only certain states in the US provide it. Many families with ASD children will move across the country to a state that provides this therapy. Missouri is also the Autism research capital in the US. Columbia University is currently pumping out 10 Autism studies alone and that's not counting the ASD studies going on at the University in Kansas City Missouri or the studies coming from other ASD centers in MO.

Our daughter is still and will always be our perfect, cute little comical Curly Sue who is a daddy’s girl.

Our son will always be my little sweetheart who showers me with hugs and kisses and favors me more than he does his dad ;) We wouldn't change anything about these little guys.