Stories of Hope

Swinging on a Star

My daughter Nea was a happy, giggly baby. She hit milestones pretty rapidly. She was sitting up at 4 months, walking by 9 months and signed her first word (milk) by 6 months. By the time she was 18 months she had a signing vocabulary of about 50 words, and could speak at least half of them. However, at 20-22 months, we noticed that she didn't say as many words as she had in the past. It wasn't all of a sudden, it was just something we noticed over time. By the time she hit her 2nd birthday, she was down to maybe 5 words. She signed even less. We took her in for her 2 year check, and I relayed my concerns to her pediatrician. She agreed there was cause for concern and sent us to a speech therapist for eval.

The speech therapist noted immediately some sort of motor planning issue. She worked with her for a couple weeks and then had an honest, heart-felt discussion with me. "I think she may have Autism. She needs to be evaluated by a developmental pediatrician." I was stunned. I am a veteran pediatric nurse (25+ years) and did not have Autism on my radar. Hind-sight is 20/20 and as I reviewed all of the things and all of the "quirks" that made Nea...well, Nea, it all came together. The repetitive play, the awkward shyness (even with Grandma), the fascination with wheels, the loss of words.....

The developmental pediatrician was wonderful. I will always remember her words, "Yes, she has Autism. Getting help early is key. Keep moving forward."

And that's what we have done. 6 hours of therapy a week with OT, Speech and Developmental therapy, plus a special needs swim class. She has made amazing progress and I am so happy for her. We continue to move forward. If she begins to stall, then her therapists change it up to get more growth.

Every day we learn that light shines through the darkness. There are shining stars everywhere, we just have to look.

And Nea is our brightest star.

Buffy
Springfield, IL

Rory's Story

I knew things with Rory were not going as they should when he was around 15 months.
He was a gorgeous, boisterous toddler, a real handful! I started our journey with our family Dr who referred us for a hearing test, suggesting my concerns were nothing more than a paranoid mother.

Naturally his hearing tests were fine and sadly we were referred to a specialist who was less than understanding and very bluntly told me my gorgeous boy had Autism. His words were harsh as he told me Rory would never amount to anything, he would always be as we saw him now. Non verbal, manic and that we should consider our options. His words were like a knife in my heart. For the one and only time, I felt hopeless and full of despair. I stopped our car on an overpass and had a fleeting moment where I thought my family would be better off if we didn't go home.
Luckily I sought a second opinion and this Dr was an angel! She told me that we had many options and that Rory would grow and thrive with our guidance.
We immediately began speech therapy, occupational therapy and early intervention and saw wonderful results. His talking began to change and we saw purposeful words not just repetition. We travelled the long road to toilet training and we were surrounded by amazing supporters who understood the tears and triumphs!

As he began school we were truly blessed to meet the most amazing teacher who showed us how much more we could achieve.
Rory is 11 now and reads, it may be an early level but reading nonetheless. He has mastered basic writing and can type into the computer just about anything he wants.
He is still profoundly Autistic but I never imagined in those early days we would come this far.
Words can not express our joy and our thanks to all those wonderful people who have shared Rory's story.

Jane Horrabin
Melbourne, Australia

Alec Speaks!

The term “non-verbal” is often associated with the word “can't”. “Your child can't speak.” “Your child can't communicate appropriately with peers.”
My son Alec is one of 3 siblings on the autism spectrum. He is non-verbal. Alec doesn't speak. Alec doesn't communicate appropriately with peers. Alec was diagnosed with autism as early as 12 months of age. He developed slowly, in the midst of immeasurable frustration, due to his inability to make his needs known. He was encouraged by several of his therapists to incorporate sign language and the use of pictures to relay his thoughts and requests. Alec was unable to adapt to either concept.

Alec was a little over 2 when he independently began typing words in the search bar of his father's iPod. Alec, like many children on the spectrum, chose not to respond to work that minimized his capability. The concept of speech appears to minimize what autistic children are truly capable of.

By age 3, Alec was independently browsing the internet for language tutorials. Alec's first spoken words were in Italian; a language not spoken by anyone in our family. As suddenly as we were blessed with the sound of his voice, the language ceased permanently. It was then that I learned how far ahead of the game Alec truly was. Alec could read, Alec could spell, Alec could type, Alec could speak!

By age 5, Alec discovered a passion for music; namely, The Beatles. I was unaware that the part of the human brain that processes speech is entirely separate from that which processes musical lyrics. Alec's obsession with The Beatles, allows me to hear my son's beautiful voice through lyrics every day.

Although Alec doesn't speak to me directly, or call me “mom”, I know am one of the lucky ones. Hope is knowing one can, rather than can't. My understanding of Alec's knowledge can no longer be put into words. When I hear my non-verbal son sing every word to The Beatles, Let it Be, I am the one left speechless.

Julianna GildeLamadrid
College Point, NY

My life as it now

well let u how I found that had it it was round 3 year old start play with my hands am yes my my name is pillie yes. Am twin bother no my twin dose not have it am the only one in my hold family has it yes I get made fun of in 2004 I join the navy in 2005 I am officer yes am still at this job today just I born with it not let people me that dum not dum am date girl who also is born with it her name is Melanie yes it hard know deal with his every day is some never want to help to me but god made this way I have talk being born with it all over the world not scare to show that have it not let bing me down not one bite if u found born with just u different still go on in life . Look me am officer I was in the navy but am born with it I have girl who am date am twin but if do get put down stand back up know that god made u u good looking just way u are thank u for read my story here some stuff love because am born with it .

Stuff I like

1. Georgia bulldogs

2. . My job

3. Teach others both autism

4. Stuff /water /wind .

If found be shock but just u found u do have now u move with your life my girl found she was 21 year old

pillie
Fayetteville, GA

Working with Autism

I am an LMT. I have been working with several types of diagnosis. I have had one client for 7 years. He has a diagnosis of Autism. Since I started working with him, I have realized that he's not broken, he just runs under a different program. I look forward to my time with him as much as I know he does. His care giver states that he knows what day and what time I come and he is always ready for his sessions. I am so blessed to work with individuals such as him. Blessed Be.

Angelita Diaz
Austin, TX

a precious gift

after watching each of our children start their life journey we began to plan for our next stage.
we were surprised to see that wasn't happening, with the plans put on hold as we were given our 2 yr old grandson to care for.
.
From the time he came into our full-time care we put all our efforts into giving him everything he needed and deserves.
With the personal issues he was to overcome, due to the past he had been taken away from, we were yet to know what lay in-store for him and what real hurdles he would still have to overcome.
not knowing that those underlying issues of neglect would delay the diagnosis of Aspergers/Autism until he turned 9 and therefore too old to access any early intervention assistance and leaving us without anywhere to turn for help.

We still worked hard to show him a protective loving environment and were eventually rewarded with a beautiful vibrant personality.
Never letting anything keep him down, his natural instinct, was to continue forward regardless. His bubbly energetic love for life unveiled, even with his diagnosis, he still found the good in everything he encountered.
Even with a one step forward, then three paces back, he always finds a way to bring a smile to everyone's face.

How can any parent 'not' look into the eyes of their precious child and need to instantly nurture, protect, and educate?
Having the chance to encourage, experience and enjoy every aspect and milestone with a precious child; what a beautiful gift we were given.
Without a moment to breathe or fully acknowledge the implications of our decision.
We would never have hesitated; we would never have refused;
We did what had to be done; we did it out of love!
the journey still continues and we are happy to be a part of it.

Anonymous
lithgow, Australia

Autism's effect

A newborn baby is a beautiful thing for many reasons. I often think that parents look at that newborn baby with a wonder and awe. The child can grow to be anything he or she wants. I am sure many parents spend time imagining the life that baby might grow to have.

The precious newborn means the existence of an endless world of possibilities. Then one day news is shared or a realization is made that takes that all away. Not only is the world of possibilities not there but the expectation of what most children, teenagers and adults experience is different. That is the effect of autism. Autism changes a parent who previously dreamed their child would become a doctor or professional athlete to hopeful that one day that child would be capable to live on their own or mentally capable to being in a romantic relationship.

A parent of a child with autism has to simultaneously retain a deep hope that their child can improve but also accept that their child could lead a life different than once imagined.

I am the mother of a 7 year old boy who has autism. I love him and I still cling to the hope for improvements. I dream of a day when I will be able to sit with my child and have an actual conversation with him. With each effort I make in keeping up with paperwork, IEP meetings, evaluations, therapy, and more I know it is a tiny step back to that world of possibilities. When I see my son work so hard at the tasks required of him, I do sit back and look at him in wonder and awe.

Anonymous
Mesa, AZ

My Aspie

My Aspie is Rob McGregor, he is 17 years old. Rob was a challenge growing up. He rose above all the obstacles and pushed forward to succeed in all that he does. When younger I was told that my son wasn't going to do all the so called normal things that "Normal" kids his own age do. I can't say that I was ever disappointed. I took his diagnosis and ran with it. I searched out all the avenues needed to help him succeed. I knew going into school that he needed services and which ones that would better serve him. The hardest part was fighting to get those services. After his Kindergarten year it actually got easier. All the services that I requested were given to him and we honestly feel blessed because everything seemed to fall to place. My son had issues don't get me wrong but he learned how to deal with them and moved forward. My son craved to be social and I guess me forcing him into Social situations was actually good for him. I can say proudly that my son can now handle just about anything put in front of him. He just finished his Junior in High School where he maintained all A's and B's and is even a Teacher's Assistant in his Social Skills class going on his second year. I'm proud to say that my son has overcome his biggest obstacle and that is being in front of and talking to a group. My son is a lead singer of a local Heavy Metal group called Devilkin Assailant. My son and his band play at local Bars and Venues here in Fresno Ca. All you have to do is a Google, Youtube or Facebook search and you can see him. http://www.youtube.com/watch?v=HqXaZq7KubI

Rachael Fernandez
Fresno, CA

My Hero My Son

My son was diagnosed with Pervasive language disorder nos mild Autism when he was 2 and a half, and it was very difficult for me as a mom, I thought it was my fault, I thought I did something wrong, or during delivery something went wrong, I had NO support not even from my husband, lost relationships with family members and friends, I am going through this alone! I worked with my son everyday with therapy and now he is going to be 6 in Sept. and going to be a first grader and I learned that I was never alone, he was my support and still is, we still have issues to work on and challenges to over come but he has come soo far and I am proud of him more than he will ever know, he is my hero! I love you Nick always and always

Michele
Bethlehem, PA

My autistic sons life of struggles

Michael was a average 2yr old asking for bottle saying mum daddy ect. He went to bed one night and when he woke his life had changed. And so did mine. He didn't respond to any sound no more smiles no more eye contact and no more speech.
For me it was like starting all over from scratch.
Michael become frustrated as he could no longer communicate. We did pecs and Michael picked up basic. Then he lost interest in that.
He copied others sometimes. But he didn't understand what others was saying to him.
We used 2or3 words at a time the basic and now he can understand and we can stop him getting frustrated.
Michael still makes his own choices even if I think there not right. That's something he is in full control
Everybody has tried to change this.
But just causes Michael to withdraw.
He is now 22 and most of the time he is happy if left to make his choices.
I have tried everything life has given me to change some of Michaels behaviour.
But some things you will never change.
Like shouting making noises not wanting to use toilet.
Just learnt to get on with it.
Just think I would never change my son for anything so why should I make him change certain things.
It's hard as a mother to cope. But then the saying nothing in life is easy.
Sometimes harder when offered help with Michael everything they say I have done.
Think there's nothing I haven't learnt .
The main thing to me is he is happy and everyone who knows Michael have learnt about autism and have excepted Michael and his autism
making autism more aware helps them as we'll as others.
Most of all those who know Michael except him .
He is more than one in a million to me. And I would give my life for him and do all I can for him.
So that's why I just get on with it

Lesley mills
Manchester, United Kingdom