Raising early intervention and autism awareness through our amazing journey

Posts tagged ‘Autism’

What does autism look like?

I hear comments all the time about Milo and his diagnosis of autism. Some of the common ones are:
“He doesn’t look autistic”, “It’s awfully early to diagnose autism at such a young age?!”, “My _________ is autistic and your son doesn’t look or act like him/her”.. The list goes on.

I know people usually don’t mean ill by making such comments, but as a mother that does everything to help her child, it can be pretty hurtful. It seems as though some doubt my son’s autism, or they need some type of proof that he does in fact have autism. All of which can be very annoying.

So what does autism look like? Autism can be non-verbal or verbal. It can be severe or very mild. There can be behavioral issues and sometimes behavior is like that of a neuro-typical child. There could be a lot of self-stimulatory behavior, or there could be none. Autism can be extremely cute, funny, and smart. The fact is, is that autism doesn’t “look” like anything.

One of the most hurtful things that my daughters have had to hear was “He (milo) doesn’t have autism, she (meaning me) just thinks he does because he doesn’t talk”. And that statement was coming from a grown adult.

I think what people need to understand is that a diagnosis isn’t concluded by a quick trip to the doctor, or by what a parent reports, or any of the “easy” ideas that someone might think. The diagnosis is reached by extensive evaluations by trained and certified professionals, usually by a medical doctor. It’s not an easy conclusion to come to, and it certainly isn’t easy for the parents to accept that their child has special needs. The last thing a parent wants to hear is someone doubting the one thing that is true and real. It doesn’t help, and if anything it causes pain. Yes, I would love for my son to not have a label, but I wouldn’t trade it for the world because it makes him who he is, and more importantly it makes him who God wants him to be.

On the flip side these comments give me hope because all that it means is that more awareness needs to be raised to educate those who don’t know about autism. A favorite quote that I’ve read is
“If you’ve met one person with autism… You’ve met one person with autism.” It’s just that simple.
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In my daughters words

So I have talked about my son who has autism, but I haven’t really included my other two Nero-typical children.  My son has two older sisters, ages 11 and 8.  They have been reading the blog and thought it would be important to post how they feel, in their own words.  I think they did a wonderful job expressing how they feel.  So here you go!  🙂
 
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Rosslyn (age 11) –
 
“It was hard after I heard that my baby brother had autism.  I really thought that my mom was kidding and I started laughing!  But when my mom showed me the papers that the doctor had given her, I was heart broken.  After I knew about autism, I could totally tell!  He would scream and kick, and if we went to a store or something like that, I would see kids his age laughing and talking.  That’s what really pushed it.  I guess you could say I was a little jealous.  Jealous that other people could actually have a full conversation to their child, and we couldn’t even say “Milo!” to get his attention.  I remember when my grandparents came over after we found out, my mom started crying.  It was really sad. 

Over 2 months, my mom has been working with him non-stop.  He is doing so much better!  I’m so proud of him!  Every day he gets better and better!  I love him so much!  I even taught him how to snap! “
 
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 Lillian (age 8) – 

“When my mom first told me that my little brother had autism I was a little sad and embarrassed because when we went out to dinner he would scream.   It’s kind of sad to have your little brother have autism.  Most people feel bad for the person who has autism because they probably have a lot of frustration.   Its kinda hard to deal with autism because he doesn’t know how to talk and let out his feelings yet.  

The way that me and little brother communicate is that I say the word slowly and he understands it sometimes.  I can make him laugh by saying “hi!  Peek a boo”.  And sometimes I jump out at him and chase him but I don’t go full speed at him because I know he’s little.  I like to go outside with him.  I like to run around a tree and fall down on purpose and he starts laughing.   I want him to talk soon so I don’t have say the words slow, because I run out of breath when I do.  I love my little brother even though he has autism because to me it doesn’t matter.  He’s still the same as all of us.”
 
These girls are amazing with our little guy.  I am so proud of them!
 
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Before and after

Our little guy went from an outgoing boy, to a child who could not communicate at all. In the video you will see me trying to interact with him, as well as trying to get his attention by clapping and yelling his name. All of these things he once had were gone. I knew he could hear because after I yelled his name, he became very agitated and tried to cover his ears with the blocks. This was a very mild scene. He was never aggressive towards anyone, but he did a lot of “swiping” things off of the table and floor. He would also scream because he was frustrated by the fact that he could not communicate.

The next video is taken just three weeks after the diagnosis. This is when I researched and used many resources to teach myself how to reach our son. He was sitting, looking at a book, interacting, and pointing at pictures! I couldn’t be more proud of this little gift we were given.

The strategies and tools that I have used are:

1. Applied Behavioral Analysis (ABA) … I personally LOVE this one because I am a research and science nerd!
http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba

2. Picture Exchange Communication System (PECS)
http://www.autism-society.org/living-with-autism/treatment-options/pecs.pdf

3.  VB-MAPP

http://www.marksundberg.com/vb-mapp.htm

I have not received any certification in training at all, but I have amazing friends who are professionals in this field, and have taken the time to train me enough to where I can teach him on my own.  I don’t plan to be his only teacher, but I am here to say that parents CAN work with their children.  The information is out there, you just have to look and ask for help!  My husband and I are still waiting for waivers to be accepted so that we can provide him with in-home ABA therapy- the only scientifically proven treatment for autism.  ABA is also the most expensive treatment, usually costing $60 an hour, and the suggested weekly hours of ABA are 15-30 hours a week.  That adds up quickly!  So until we are able to get insurance on board and the waiver approved, I will continue to work with him, and continue to learn.  I just love our little guy!

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Autism diagnosis- now what?

We were given a huge folder with too much information to take in. In fact, we didn’t go through the folder until that evening.  We wanted to dissect it together to support one another.  We both took turns crying, not intentionally, but I think one of us would cry and then it would set the other off.  There was SO much information; schools for autism, Medicaid waiver paper work, types of therapy, diets, a “how to tell friends, family, and siblings” booklet, how siblings can help booklet, support groups, insurance, websites for information about autism.. anything and everything was in there.  We didn’t even go through all of it that night.
As Byron was still grieving, I was not sleeping and researching everything I could.  Even though I have worked with children of special needs before, I had no experience with toddlers of special needs, not to mention that it is completely different when it’s your child.  I have some good friends that work in the autism field and they were amazingly supportive, giving me resources, book recommendations, and information on therapy so that I could start working with him right away.  To be honest, I think I grieved for one evening, and then I dove into printing pictures for him for Picture Exchange Communication System (PECS), so that I could start communicating with him right away.  Friends of mine in the autism field sent me professional information so I could start therapy with him, and I started that same day.  I haven’t stopped working with him since.  We work everyday all day.  Even our “playtime” is work time (he doesn’t know that though).
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 I guess I look at it as if I have 2 choices.  I am going to either spend a lot of time grieving over the child that I once had, or work extremely hard to get as much of that child back.  I have chosen to work for his best interest.  If he were to make no improvement at all  I would love him just the same, but he is improving.  He is getting better and better everyday.
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It started after his 1st birthday

Twelve years ago, a friend of mine was telling me a story about her daughter’s journey with autism.  She explained that her daughter was just like any typical toddler; running, playing, laughing, and talking alongside her twin sister.  Then one day her daughter stopped talking.  It was such a heartbreaking story, yet she told it in a light manner and seemed to be comfortable and accepting of her daughter’s autism.  I was amazed by her strength and remember thinking how difficult it has to be.  Her journey stuck with me and I have thought about their family ever since.  I never thought that I would be walking that same path with my son, twelve years later.

Our son was born at 36 weeks weighing 8lb 5oz.  Technically he was a preemie, but from the looks of things, he was anything but!  He was put into the regular nursery and didn’t require any special care at all.  He started out the exact same as his two older sisters; healthy, cooing, laughing, happy and lovable.  Our son crawled around 7 months, and was running at 13 months.  Things were very typical and his well visits were great so there was no concern at all for any problems.

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He had 6 words: mama, dada, up, down, yes, okay.  It was a really cute mix of words.  He was interactive.  He loved laughing and playing with his older sisters the most!  When we would call his name, he would answer.  When we would tell him “no”, usually he would stop doing what he wasn’t supposed to be doing..usually.  And then around 15 months, things started to change.

At 15 months he stopped trying to get our attention.  He stopped interacting.  He stopped using eye contact, and he completely stopped talking.  I remember telling my husband that it was probably a phase, or that maybe he was just “being a boy”.  Then the climbing began.  He climbed on the couch, the chairs, and then the tables.  When I would tell him “no” or ask him to get down, it was like it didn’t even register.

One evening he was standing on the kitchen chair and I wasn’t fast enough to grab him.  He fell, hit his head, and off to KidMed we went.  The exam was fine, no concussion or head trauma, but the doctor told us to make sure to get his attention over the next few days to ensure all was okay.  I really though that he was just a toddler boy that wanted to do his own thing and that surely this phase would end soon.  Things weren’t okay.  I had a feeling that it wasn’t caused by the fall, but there was surely something going on.  He didn’t respond to his name at all.  I would yell his name and clap right next to his ear..nothing.  After a visit to his pediatrician the next day, we were referred to a Developmental and Special Needs pediatrician.  I had a gut feeling that this might be autism, but it just couldn’t be.  Not my son?!

He had extensive testing for almost 2 hours. My husband and I watched as our sweet little man wasn’t doing anything the doctor asked.  “Where’s your head?”..nothing.  “Point to the dog”..nothing.  “Where is mommy?  Where is daddy?”..nothing.  These were things that he could do a few months ago, and now it was all gone?!  It was heartbreaking.  Both of us sat “poker faced” with tears rolling down our cheeks.  And then “that word” was said that changed everything.  Autism.

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