Autistic vs. person living with Autism

"My child is autistic" is something you will never hear come out of my mouth. Like many other adjectives to describe people, they tend to reduce a person to a limiting characteristic.
If you have diabetes or bipolar disorder, would you rather be introduced as "My cousin Sofia who is schizophrenic", "my brother Pete who is diabetic" or as "my cousin Sofia with whom I have a good relationship" or "my brother Pete who is so nice"?
Society loves to label people:you are this or that. It creates for others a false sense of control over the unknown. What should you expect when you meet someone? If you have basic information, then you feel you have more control.
"Austistic" is an adjective that describes a permanent and inherent characteristic of a person. Is Andrew "a sweet, funny, loving little boy with Autism" or is he "autistic"? Autism does not qualify and describe who Andrew is, just like diabetes, high blood pressure or bipolar disorder does. Yes, Andrew "has" Autism, but Autism does not define who he is. If someone refers as someone else as "Autistic", please tell them to refer to this person as someone living with Autism.

Hope

When your child has Autism, your biggest strength is HOPE.

At first it is...
HOPE that it is not true
HOPE that they are wrong
HOPE that you will wake up from this bad dream
HOPE that it only happens in movies or novels

Then it is...
HOPE that your child will speak
HOPE that your child will laugh
HOPE that your child will say "I LOVE YOU"
HOPE that your child will wave "bye bye"

Then it is...
HOPE that your child will answer a basic question
HOPE that your child will stop having a tantrum everywhere he goes
HOPE that your child will be able to put his shoes on
HOPE that your child will be able to understand what you say
HOPE that your child will be able to understand something funny

Then it is...
HOPE that your child will be able to do a basic puzzle
HOPE that your child will be able to sit on a chair for more than 2 minutes
HOPE that your child will be able to follow a teacher's basic instruction
HOPE that your child will be able to graduate from school

Then it is...
HOPE that your child will have some friends
HOPE that your child will fall in love one day
HOPE that your child will get married one day
HOPE that your child will have children one day
HOPE that your child will live on his own one day


Will my son be able to do all that?
Maybe or maybe not
All I know for sure
Is that I love him
no matter what

teaching Andrew to be more sociable

It is difficult seeing my little boy not playing with others when we go to the park. His brother is a social butterfly, playing with everyone, telling his life to everyone and making friends instantaneously. In the meanwhile, Andrew will play with sand by himself, he will go up and down the slide by himself and will not be in the least interested by the other children who are laughing and playing close to him. It is as if his brother had inherited 120% of my social skills and Andrew had inherited 5%. Sometimes, another child gets close to Andrew and starts playing with him. If Andrew is not too tired, he may let the child interact with him for a while. If Andrew is tired, he will grab his toy, run away and tell him to leave him alone.
Is being sociable overrated? I think we all have different needs of sociability, but at a minimum, we need some so that we can interact with others, have a few friends and be happy. Being at preschool with typical peers is SO important for Andrew, I cannot stress that enough. Having his therapist come along is SO important for Andrew! He needs to be encouraged to socialize, if not, he simply will not. This skills needs to become natural.

Andrew had difficulty at the museum

This morning, with Andrew and his brother we went to the museum of natural science. There was a reptile exhibit. I did not expect there would be so many people. Andrew had difficulty with the crowd. He ran away from me a few times, did not respond to his name, tantrum a few times and simply was not interested in doing anything. We left after a short time. Next time, I will know not to bring him in such a crowded place. Now he is taking a nature walk, a lot better for him.

Why it is so important for Andrew to get his therapy

ABA therapy has worked so well for Andrew. In June of 2009, Andrew knew about 6 words. He now speaks in sentences of 3 and 4 words and sometimes in full sentences and can understand so much more when you speak to him.
Yet, so much work remains to be done.
In a classroom, he needs to be able to:
-follow the teacher's instructions.
-be able to engage socially with his peers, speak to them, show them things, share his toys, invite them to play with him, ask them questions
-be able to transition from one activity to another without tantruming or without having to physically be carried to another place in the classroom.

These are things that for the most part, a typical child can do fairly easily. For certain children with Autism, and for Andrew, these are things he cannot do yet.

His ABA therapy teaches him the verbal and social skills to engage with others. He also currently attends a preschool with typical children where one of the therapist comes with him. She teaches him how to listen and helps him socialize with others.

Andrew needs one more year before he goes to Kindergarden. With this therapy, he will have significantly less difficulty in a public school classroom. The classroom is where he will spend 80% of his life in the next 13 years. It is essential that he gets all the help he can get NOW while he is still young and his brain is maleable like play doh.

I am so hopeful for the future, yet so scared that he is not able to get the help he needs.

After the diagnosis...

After Andrew was diagnosed, I could not go to any public places without crying. I would go to my favorite stores, with or without Andrew, and I would see other mothers with little ones who would do all that Andrew could not do: pointing with the index, saying "mama", responding to their name, laughing and saying a few words.
The first three months after the diagnosis, I would just start crying in stores. I cried all over town: in line to get to the cash register, in aisles, in coffee shops... I could not control my tears, they were just flowing...
Two places I avoided like the plague were the wonderful children museum where I had a membership and public parks. I went once with Andrew and started seeing everything Andrew was NOT doing and it was breaking my heart. The same with the parks: Andrew at the time did not know how to go up stairs and go down a slide, he would just find a pole and start to pace around it. I wondered if I could EVER go back to these places and if my tears would EVER stop from flowing in public places. My heart was simply broken.

funny moments

Andrew memorizes movie lines quite well and uses them here and here randomly. He loves to watch Ratatouille, the movie with the French rat who cooks very well. In one scene, the father rat tells his son "shut up and eat your garbage". What a great line!
One day, we go to a very fancy food store to buy some of Andrew's special diet. Andrew was wearing a cute hat, so naturally a man went towards him and told him "hello little man! what's your name?" to which Andrew replied "Shut up and eat your garbage". The man's face was classic: "what kind of child is that? And what kind of mother teaches her son such profanity?"

magical moment #2

The second magical moment happened quite recently when Andrew, for the first time, said "I love you". It was bedtime and as usual, I was rocking him while caressing his hair. I told him all sorts of sweet things and lastly told him that I loved him. After a brief silence, I heard a little voice say "I love you mommy." I was so overwhelmed that I could feel the tears of joy on my cheeks. THE moment had finally arrived...

magical moment #1

When you have a child with special needs, you don't take anything for granted. Every little step, every word, every look, every smile, fills your heart with hope and joy.

For me, there were two magical moments. The first one is when Andrew called me "mama" for the first time. Since he did not say much until he was two years old, when one day he actually looked at me and called me "mama", my heart melted. I never thought this time would come. Andrew did it a year later after his peers of the same age, but he did it, and to me that's all that matters.

Another bump in the road

Andrew has made so much progress that now it is estimated that in one year, he will be able to graduate from his program! Wonderful, fantastic!

A letter came telling me that the matching of the funds was over. So, Andrew is now doing so well, one year to go, and there we go again, NO MORE MONEY!!


the sleepless nights are back...

results

Andrew's first year in the ABA program was incredible, let me say this again, INCREDIBLE. I would have never expected he would make such enormous progress!
He came in knowing six words, and barely understanding commands.
Now, a year later, this is what Andrew can do:
-he speaks in full sentences
-he is potty trained (for the most part)
-he knows all his shapes, colors, can count to 20
-he can request things such as milk, water, etc with a full sentence "I want milk"
My little boy has changed from being mostly silent to a talkative and fun little boy.
I am so full of hope for the future!

First plan for his ABA therapy

After many, many back and forth dialogues, I managed with the help of so many friends, to get the administration at my workplace to match donations. The fundraiser started and we managed to get enough, with the matching, to obtain one full year of therapy. Once again, I was relieved, I had found a solution to my problem.

30,000$ a year for how many years??

I was desperate. My son was able to get a high quality treatment, which I realize now, maybe only 5% or less children with Autism in this country are able to get, but he would not be able to receive it because of MONEY?? Because my insurance company to which we pay an astronomical amount of money in premiums and co-pays (and we get it through our jobs) would NOT pay for my son's treatment?
So, basically, if your child has Autism and if you belong to a middle or lower economical class, then your child would not get treatment? This was unacceptable. Andrew, like all children, deserves the best. I was not going to give up and not give him treatment because of others who do not care at all about my son.
So, once again, I had sleepless nights trying to figure out, HOW I would come up with the money.

What? what do you mean it is not covered?

I filed with my insurance, the most important insurance company in North Carolina, and the treatment was... denied. What do you mean denied? My son needs help, ABA is a proven treatment, IT WORKS! Well, the insurance company told me that it only works for some individuals, it is not a therapy certain to work, besides it is kind of experimental...
Well, if you have cancer--God forbid-- doesn't the treatment work only sometimes?
So what's the difference here?
The problem is that there are 1 in 90 children in the US who are diagnosed with Autism and there are certainly not 1 in 90 who are diagnosed with : leukemia, diabetes or any other kind of life threatening disease. So, naturally, it is in the insurance company best interest to not cover a treatment that more rather than less children will need.
There I was, left to pay Andrew's treatment with the cost of 30,000$ a year. His therapists estimated he might need between 3-4 years depending on his progress.
Once again, I was devastated and this time, I was enraged too.

One on one therapy part III

I was fortunate enough that in my area, in fact nearly in my backyard, there is an ABA center that offers intensive one on one treatment to children with Autism. The space is extremely limited: the center only takes 5 or 6 children at a time.
I used all my resources possible to get him in there sooner than later, and thank God, it worked!
Andrew was going to start an intensive treatment, which according to studies, can dramatically improve one's life. All was well, I was so happy and so relieved, Andrew would get the treatment he so needed.
I thought to myself: "I will file the treatment expenses with my insurance and they will cover it (I assumed at 80%) and all will be fine."

One on one therapy part II

After being on the waiting list for nearly a year, I managed to have Andrew receive another kind of therapy, TEACCH. Mr. Ron came to the house an hour a week for twelve weeks and taught many things to Andrew:
- first, sit at the table and be attentive
-understand that there is time for work and time for play
- how to pretend play (I loved the little plastic piglets who pretended to drink water and go back to their plastic barn)
- organize toys, books and flashcards by categories. Label each box with an image of its content so that Andrew can easily access it.
Andrew made so much progress with TEACCH and since it is funded by the state, there are no costs associated with it. However, most of the time, it is intended for the parent to do the therapy with the child and since both my husband and I are working, it was not a possibility during the week days.
So what should be next? How could I help Andrew reach his maximum potential so that he can become as successful as possible in life. When I say "successful," I mean "happy". Personal happiness is my definition of success.

One on one therapy

While at his center, Andrew received a lot of one on one therapy. His therapist were so wonderful and make such a difference!
Kori
With his play therapist, Andrew started to play with cars the proper way (he used to throw cars across the room). He also learned to stack blocks, do simple puzzles and appreciate bubbles. Kori was such a joy, both for Andrew and for me. She gave me so much hope! Thank you Kori!

Maria
With his occupational therapist, Andrew was able to chew more foods. Before, I had to mash every food because he could not stand any texture. He still has issue with food texture and color. We are still working on it. Since Andrew is under reactive, he seeks constant movement to stimulate himself. Still to this date, he jumps when he watches television or when something is exciting to him. His therapist worked with him on issues such as touching certain textures that would be repulsive to him: dry sand, playdoh, wet sand, finger paint. Andrew still does not like his fingers to be dirty or wet. he is starting to tolerate more finger paint. Thank you Maria!

Stacey
With his speech therapist, Andrew started saying his first words: mama, ball, car, cat. Stacey has been incredible with him. I never thought Andrew would ever speak one day, and then suddenly by the time he was two years old, he could say 4 words, including "mama". Thank you Stacey!
I was overjoyed.

Autism? What next? The first steps...

The day of Andrew's diagnosis, I looked up so much information on the Internet!!

The diet:
I decided to start him on a Gluten Free and Casein free diet. I started giving him rice milk and thank God he liked it. Within two weeks, we started seeing changes in Andrew. He would turn his head towards us when we called him and we start smiling on occasions. He has been on the diet for two years now and I strongly believe that it is helping him a lot.

A structured preschool:
At the time, Andrew would stay home with a family member during the day because we could not afford daycare for him. As soon as Andrew was diagnosed I identified a school in our community that was especially designed for children with disabilities, but at the same time, had typically developing children so that they would serve as models. Two months later, Andrew was able to start full time at that school. We received a scholarship because we could not afford the price of the center. Andrew's teachers were amazing women who not only loved him, but they also believed he could reach the stars. With his teachers, Andrew progressed rapidly:
-he now could sit at the table
-he now could eat with a spoon
-he now could drink from an open cup
-he now could walk up the stairs
-he now could sign for "more" and "milk".

For the first time in six months, I had hope.

Autism's diagnosis

Over the next 12 months, not only Andrew was not able to answer to his name, but he would spin objects on the wood floor, not wave "bye bye", say no words at all--not even "mama" and "dada", had strange eye movements and paced in front of a wall and around door knobs.
By the time he was 18 months, I finally knew why Andrew was different: he had Autism. I was devastated.

Andrew? Andrew? are you there?

"Andrew?" "Andrew, baby" "look at mommy!" "Over here, over here!!". Andrew was 8 months old when I noticed that maybe he was not hearing properly. It seemed that I had to call him so many times for him to look at me. At that time, I just put it aside in my mind and adopted a wait and see attitude.