Stories of Hope

Impossible to Possible

This is Matthew. He hit all the normal milestones a baby should. At 18months, it all stopped. Pediatrician recommended getting his ears checked, when the results came back fine, we were referred to a behavioral specialist. The diagnoses came right after Matthew's 2nd birthday.
He has been non-verbal, until about 6 months ago when we heard him count out loud 1-10, now he tries to repeat what we say to him. Even last night at the grocery store, he grabbed an apple and said "Apple". Words aren't distinct all the time, however they are becoming more frequent. Matthew can write his name, sort and sign all the letters in the alphabet, use colors to distinguish his wants when it comes to choosing foods, toys, drinks etc. I was told he would never speak, he would never understand what my purpose in his life was.
I am here, 6 years later, to tell other parents to not give up hope. His father, 2 sisters and I work with him daily and push him to communicate with us. (The girls are his biggest fans!) Whether it is with signing, verbalizations, approximations or pointing. We have even gotten him to sign and speak simple phrases such as, "I want more please". His words are not completely clear...yet, but his effort is astounding.
He wasn't able to be in public places, sights and sounds were too much for him. Over the years we have been able to build his tolerance. He can now go just about anywhere, last summer he went to see his first movie in the movie theater. He did incredibly well!! We are so proud and blessed to have him as our son. God gave us Matthew to see the impossible things made possible. He is the love of our lives. Looking forward to his years ahead. He amazes us daily.

Layne Blethen
Lexington, KY

I Remember

I remember when his sweet little voice went silent.

I remember when the only words he said, were echoes of what was being said to him.

I remember when he mastered requesting items. "More", and "Please", seemed like major victories.

I remember when he began (yelling) "Help me please!" when he got frustrated, rather than having a meltdown.

I remember when he started saying when he liked things.

I remember when I started giving him the option of YES or NO after questions, and he was able to choose which answer he wanted, and it felt like we broke through an enormous wall.

I remember when he began answering yes or no without being prompted.

I remember when he started answering "W" questions.

I remember when he started ASKING questions.

I remember when he started calling me "Mommy" when he would talk to me.

I remember when he started having conversations simply because he wanted to share something with me that he thought was cool.

I remember when he learned negation: "I don't want to do that" and "I don't like that". There is so much power in those words.

I remember when he figured out what it meant to miss someone, and then saying it in appropriate circumstances.

I remember when he started adding in his own cute phrases, "See ya' next home!" (instead of see you next time), "I'm sleeping on the stars!" (when he was laying on a blanket with planets and stars), and "Easy squeezy!"

Jacob has worked so hard over the last two and a half years. He has been challenged and encouraged, and I am so proud of how far he's come. In several weeks he will start kindergarten in a mainstream class, with time for sensory breaks. I find that I get more nervous with each day that brings us closer to starting this new and uncertain journey. When I start to doubt that he can handle this transition though, I will look at this list of all he has accomplished already, and I will remember.

Kellyn MacQuarrie
Stanwood, WA

{ Joshua's Story}

It all started when my son was two years Old. I noticed something wasn’t right. He wasn’t meeting the milestones that I had read up about it. Him being my first born, I noticed something wasn’t right. He wasn’t crawling/walking on time. He wasn’t talking or saying the basic words like dada and other simple word. I started taking him to doctors when he was two years old. Throughout his years, I could tell something was wrong. It didn’t seem right on his behaviors and his aggression or how he would communicate. I been through to several doctors, through several types of test for my son. Once he got near age Nine, he was put into a behavioral hospital for a month. After I had sat down to discuss things with the doctors, they told me he had been diagnosed with him being in spectre of Autism. There was all these years I was wondering what was wrong. How can I fix this? What doctor does he need? Was a bunch of confusion. He had been diagnosed with xyy syndrome, So at that time I didn’t know that autism could be part of that problem, but with all I been through in all the years, all the tears I shed, just wanting the answer and when I did. Its hard news to accept, but in the meantime, its nothing you can change, but to accept it. Josh is doing better then he was before. Yes me and my son have been on a journey with all sorts of bumps in the road,we had our trials and challenges, but I have learn to deal with it better and I know through this on-going journey that there will be always light that shines down the road to get us through this and maybe one day the peices of the puzzle will fit together for all the children in the world that have Autism.

Amy
Algonquin, IL

GoTeamKate

I love, love, love when Kate flaps. Behaviourists look away because you are not going to like this. It is the sweetest of all stims when it is done to show excitement. I see it all the time at work from ASD and NT kids. For Kate, it means she is very happy. I will be sad if/when she loses this stim. She looks like a little blonde fairy about take flight when she flaps. The amount of flapping she does when she sees you is directly correlated to how she feels about you so if she goes off the handle when she sees you then you should be very flattered. I swear she almost gets airborne when she sees her sister after a few hours apart. Try not to smile when you think of that. Please don't look to your toddler and panic if you see flapping. It is a perfectly normal toddler behaviour for many. Lot's of NT people flap: Lottery winners, people reunited with loved ones, women receiving engagement rings. I see it all the time from really, really happy people. It can't be all bad. So, behaviourists, lighten up, and unless it is hurting the child or a danger to others, let them flap. (Note: not all behaviourists have a problem with flapping. Some of them have pioneered the movement to allow for stimming)

Visit us at www.goteamkate.com

Shanell Mouland
Quispamsis, Canada

Marvellous Macy

Macy my daughter a little ray of sunshine She will be 6 on the 27th of this month I can't believe how time flys.
A little of her journey so far. As a baby she would scream constantly hardly sleep give little to no eye contact and later with weaning had real issues with textures each stage presented new challenges as she got older I began to notice she wasn't developing any speech she could say 6-8 words that I could understand but never progressed, and she constantly toe walked. She began speech therapy at the age of 2 and was instantly referred to a paediatrician after one observation. Once she began nursery at 2 years 6 months behaviours included a biting hitting and throwing chairs at staff 4-6 hour meltdowns. She had no interest in anything or anyone other than lining objects and filling pages with colour and would be in her own world 90% of the day. The nursery were brilliant and a grant for her to have a full time one to one was put in place for the three mornings she was there. I also received play therapy at home to encourage Macy to interact appropriately using lots of very simple strategies. Macy is now in the second year of main stream school entering the third in September although we still have our daily challenges she is thriving on the strict routine of school. She started school unable/unwilling to form any pictures/letters just filling pages with colour she is now only a little behind her peers academically. She still has one to one support but this has enabled her to keep her focus control her anxiously and help her join in group activities. Although Macy doesn't initiate conversation or interaction the children are drawn sunny personality and she is happy to join in and she will say if she wants to be left alone I am just so proud of her.
We are still in the process of getting her diagnosed.
My middle daughter Leah is four and is a textbook child no concerns at all

Victoria Garforth
Bridgwater, United Kingdom

Being Blessed With Eddie Entering My Life

Just over 10 years ago, I met my husband and my son, Eddie. Eddie was only six years old and the most adorable little boy. As soon as we met, magic happened! Eddie and I bonded over music (Bruce Springsteen) and everything Disney. Eddie was virtually non-verbal and could only say yes and no, but he always made eye contact with me. It wasn't until later that I realized how special that was. I was very ignorant about autism and the sum of my understanding came from watching the movie 'Rainman.' I married my husband and became Eddie's Mom just 10 weeks after we met. Shortly afterwards, Eddie started to sing - every word crystal clear to his favorite songs. His miracle happened through music and Eddie began to speak. He could finally let his needs and wants be known! He is still not conversational, but he communicates with us. We can have a full and fulfilling relationship! I have learned so much about autism in the past 10 years, but I've learned even more about myself and other people. So very many teachers, sitters, friends and even strangers have joined us in our love for my son and given us the support we needed. We go to every carnival, broadway show, circus and concert we can get to and everyone who recognizes the autism bracelet I wear or notices that Eddie is autistic has been open, helpful and accepting. The pinnacle of Eddie's life so far has been when we attended one of our many Bruce Springsteen concerts and we held up a sign thanking the band for their music teaching Eddie to speak. Upon seeing the sign, Bruce passed his harmonica to Eddie, who played it non-stop for the remainder of the night - PRICELESS!

Heather Kowalczyk
Oakland, NJ

Young, Hispanic, and Autism

Do you talk to him? Do you read to him? These were the questions from the doctor whom I first expressed concern about Vincent when he 2 ½ . Why did he talk to me like this? I have my suspicions. I was young, Hispanic and on Medical. I was stunned and filled with doubt: What was I doing wrong? Why was Vincent so quiet? Why was he lining up our movies instead of playing with his toys? In my culture boys are not only loved they are adored and Vincent being the only grandson was placed on a very high pedestal. Questioning his perfectionism was followed by resistance and looking for help was frowned upon. Would he eventually grow out of his odd behavior? That was my family’s theory and they were going to stick by it even after we heard the word Autismo.
I was taking Vincent to the child development center on campus when it happened. A teacher shared, “Vincent is having trouble participating and doesn’t respond to the teachers. I think you need to talk to your doctor. ”So there it was…on our next visit to the doctor he gave me the official diagnoses based upon the concerns the teacher had shared. It took the doctor literally five minutes of observing Vincent to get the diagnoses that would open the door to services and developmental preschool. In that moment I realized that on our many prior visits the doctor was not paying attention to me or to my son. Hmmm I wonder why?

Relating Vincent's new Autism diagnoses to my family is a whole other story...just think first male grandson in a Hispanic family that adores boys and are reluctant to believe they can be anything more than perfect.

Shaida Galindo
Nampa, ID

How he changed my life

Gabe was 2 1/2 years old when he was diagnosed with autism. At the time, his dad and I knew nothing and were terrified. Gabe was unable to speak at all at this point. When he was three, we enrolled him in a preschool for students with autism. Within a few short months, he was reciting his ABC's, reading words, and said "I love you" for the first time! His teachers were amazed with his quick progress!

Now Gabe is 14. He has been moved into a more advanced special education class, and takes general ed classed in reading, math, and computers. He is moderately autistic, so this is no easy feat.

More importantly, Gabe is funny!! He does amazing impressions! He is so charming that he makes friends everywhere we go. I have seen this little boy who was so lost transform into a funny, bright, amazing young man. Gabe, your mom is so proud of you, and thanks you for showing her the funnier, kinder side to this world.

Autism Awareness. For Gabe.

Jamie Wenzel
Bay City, MI

My daughter's struggles.

From the day I brought my infant daughter home, I knew that there was something wrong. She started to do sing-song behavior, mechanical speech, and she had no sense of hers or other peoples's personal space.Her pediatrician didn't have a clue. A psychiatrist diagnosed high-functioning autism and started her on Ritalin and Paxil.
I of course felt that it was somehow my fault. I had taken my daughter as well as her older brother to the county health dept for their immunizations. I've wondered if that caused it??

When she started school, I had to educate the teachers. Made a squeeze box for her to help with built up tension that she would hold in until she was in a safe place. A Psychiatrist diagnosed High-functioning Autism. Finally by High School, she had an IEP, got around 28 on her ACT's and is now a very independent, responsible, kind and loving wife, mother and daughter.

Anonymous
Overland Park, KS

New To Autism

My 3 yr old daughter has diagnosed with autism just 2 days ago. She was also diagnosed with ADHD 4 months ago. I am new to the whole thing I have no clue what to expect. I had always heard of Autism but never knew of anyone who was. So anyone with any tips that I need to know please let me know.

Ashley
Tompkinsville, KY