Can You Make A Difference?

As many of you know, my son is autistic. And I have a heart for advocating for others with disabilities. I recently reconnected with an old friend and to learn what has been going on in his family has pulled at my heart strings.

Let’s talk about Natalie…

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Natalie was born in Guangdong Province PRC in 2003.  By the grace of God, Aaron was blessed to have been chosen to be her father and they became a family in 2004.  Natalie is incredibly smart and has a great sense of humor.  In July 2014, Natalie lost vision in both eyes and the ability to walk.  She was admitted to Boston’s Children’s Hospital where they treated her and discovered she suffered from Multiple Sclerosis.  This disease generally strikes mature women. Natalie was only 10 when she was diagnosed!  Also, MS is rare in Asians.  Their family, but especially Talie, has had to adjust their life to manage this terrible disease.  Through the care of the many incredibly caring health care professionals, Talie has regained her eyesight and ability to walk.  She is doing great in school and participates in sports and other activities.  It’s through a very healthy diet and a regularly administered medication that allows Talie to enjoy all that life has to offer.

This is the second year that Natalie’s dad, Aaron, has done the NH Seacoast Escape ride for MS.  I am asking you to support Aaron in Bike MS because this cause hits home for him. Multiple sclerosis is an unpredictable, often disabling, disease of the central nervous system that interrupts the flow of information within the brain, and between the brain and body. Millions of people are affected by MS and the challenges of living with its unpredictable symptoms, which range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS

Please consider donating to Aaron’s ride so that more advancement in research can be made so that Talie and people like her may see a life free of MS. You can donate here.

I am imploring you to search your heart and if this unusual case leads you to support Aaron on his ride for MS, I encourage you to follow your heart and support him. Sometimes all it takes is $1, $5 or whatever your heart tells you to make the difference in a child’s life. This is such a rare occurrence for MS in a child like Natalie.  She is doing well right now, but my heart aches for what the future might hold for her if a cure is not found for MS. Again, Aaron’s donation page is here.

I’m a huge believer that we can learn from others experiences and difficulties.  Sometimes we can relate to them directly and sometimes it is an indirect connection we have.  Whatever the case is, whether you can donate or not, keep Natalie in your thoughts and prayers as she navigates her life’s journey with MS.

Autism Revisited

I ran this post last year and as I was rereading it, I realized how much of it is still true.  So I’m going to recycle this post regarding Autism Awareness.

It’s April and that brings with it Autism Awareness Month.  So many people are either afraid of the word autism, or are blessed to have it.  Yes, I said blessed.  I don’t see autism as a disability.  As many of you know, if you have followed this blog at all, that my son is autistic and what a blessing he has been in our lives.

His sisters are more compassionate people because of their brother.  I have learned to see the world so differently in trying to view it through his eyes.  Autism is not a disability.  It is a difference in someone, a difference that you can learn from.  I will be the first to admit the first years in dealing with autism were not easy by any stretch. There were many sleepless nights, many tears (both on my part and my son’s) and a long grieving period.

But what I have learned is my son is autistic, which is just another word for unique in our household.  He likes to be by himself and well that okay because so do I.  He has a tough time with changes in routine, but there is nothing wrong with that because routine keeps order in our lives.  He has a very difficult time with transitions, but as he approaches adulthood, he keeps pushing through those difficult time and handles them with more dignity and maturity each time he has to deal with a transition.

I couldn’t be more proud of the man he has become.  I am truly blessed to have autism in our lives and I urge anyone that doesn’t have a true understanding of it to reach out to a parent of an autistic child and ask questions.  We love to educate people about it.

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As I was going through how I wanted to touch on Autism this month, I realized it’s not about Autism per se, but about all the parents out there who are touched by a child that maybe struggling whether it be with Autism or another disability. I have been remiss in posting regularly on this blog and I want to change that. I recently realized that it doesn’t matter how old our children are, we worry about them and difficulties they maybe having.  This blog was started in hope of helping other moms (or dads) realize they are not along in this journey of life.

Reach out to me if you have a story you would like to share of how struggles in your family have brought you joy in some way, whether it be through contacts you have met because of the struggles, how you have been blessed in some form because of it, or just because you want to share.  I am a huge believer that each story we tell will touch someone else and bring them comfort.

New Project

I know it’s been a little bit since I have posted a blog, but I have been busy.  As most of you know, I am a mom of an autistic child.  Although my son has been high functioning, there was a time when he was younger I was at a loss on how to prepare him for situations that were new and I knew would be sensory overloading for him.  To that end, I have researched and there is still no resources out there for parents and children with sensory issues in dealing with these issues.  To that end, my writing partner and I have started a new project.  To learn more about this project, please visit our Kickstarter page and if this is something you might be interested in, please consider making a small donation.

The Melvin the Moose series is a wondering set of books to not only entertain children, but to help educate parents on how children with sensory needs react to different new experiences.  We understand not all children are the same and what is in these books may work for some and may not work for others.  But rest assured, my writing partner, Sara and I strive to be advocates to help parents get the resources they need to make their life as smooth and “normal” as possible when dealing with sensory deficit issues.

To see a list of books that will be forthcoming shortly as well as future titles, please feel free to visit Melvin’s web page.

Second Chances

Second Chances is now available for purchase.  This book is near and dear to my heart as Kira, a single mom of an autistic child, learns how to love again.  Right now until the end of April (Autism Awareness Month), Second Chances can be bought digitally for just .99 cents.  It is also available in paperback and if you so choose can be ordered directly through me for an autographed copy.

Here’s a small excerpt:

Kira Nichols pushed back her shoulder length light brown hair as the crisp salt air blew it across her face. As she walked up the path to the cul-de-sac, her sneakers left small impressions in the soft sand.

She sprang into a run when she heard the rumble of a sports car that was going too fast for a street where small children liked to play. She arrived at the cul-de-sac just as the vehicle skidded to a stop in front of the empty lot across from her house. Then she caught her breath as a lean man with rugged features got out of the car. He flashed her a smile that probably caused most women to melt at his feet.

As the man moved across the lot toward the foundation, which had been capped over and abandoned for about a year now, Kira squared her shoulders and approached him. He was at least six feet tall, and she felt minute beside him. She willed herself to appear calm, but she could feel her cheeks begin to flush.

“Grant Rutledge.” He paused and extended his hand to her. His deep voice, like a shot of brandy, was warm and soothing. She swallowed hard, her anger at his reckless driving temporarily forgotten. Then it flared back, and she ignored his hand.

“Do you know there are children in this area?” she demanded, planting her hands on her hips.

“My apologies if you felt I was going too fast.” He gave an exaggerated glance around. “There aren’t any children about now.”

He offered that smile again, and in spite of her anger, her heart softened for a moment. His hand was still extended, so she shook his calloused fingers. Tingles shot up her arm, and she struggled to keep herself from yanking her hand away. Heat flooded her face. She prayed he couldn’t tell.

“Again, I apologize. I hope you won’t think I have no regard for children.”

Kira turned to go. She gestured absently at his car and said, “I just know the type.”

As she forced herself to walk slowly toward her house, she could feel his eyes on her back. She felt both foolish and thankful that she had stayed in shape.

The solitude of the cul-de-sac was one of the reasons she had always loved this spot as a child whenever she had visited her grandfather. Her house, which she had inherited from him, had been the only one in this two-lot area for years, but it looked like they were going to pick up the pace across the street again. She hoped the new construction company would limit their work to business hours, particularly the hours when Jared would be in preschool.

She thought back to the long hours the last group of workers had kept when they put in the foundation. Jared had been unable to sleep due to the noise and disruption of his routine. Hopefully this time around the noise wouldn’t disturb him. He was just beginning to sleep through the night.

If only she could.

As an added bonus, I have teamed up with a local artist who is making two incredible wooden spoons for me to give away to anyone that signs up for my newsletter between now and the end of the month.  Drawing will be May 1st.  Sign up here.

Second Chances can be found on Amazon and Smashwords digitally or order your signed paperback copy here.

Autism Awareness Month

It’s April and that brings with it Autism Awareness Month.  So many people are afraid of the word autism, or the people that are blessed to have it.  Yes, I said blessed.  I don’t see autism as a disability.  As many of you know, if you have followed this blog at all, that my son is autistic and what a blessing he has been in our lives.

His sisters are more compassionate people because of their brother.  I have learned to see the world so differently in trying to view it through his eyes.  Autism is not a disability.  It is a difference in someone, a difference that you can learn from.  I will be the first to admit the first years in dealing with autism were not easy by any stretch. There were many sleepless nights, many tears (both on my part and my son’s) and a long grieving period.

But what I have learned is my son is autistic, which is just another word for unique in our household.  He likes to be by himself and well that okay because so do I.  He has a tough time with changes in routine, but there is nothing wrong with that because routine keeps order in our lives.  He has a very difficult time with transitions, but as he approaches adulthood, he keeps pushing through those difficult time and handles them with more dignity and maturity each time he has to deal with a transition.

I couldn’t be more proud of the man he has become.  I am truly blessed to have autism in our lives and I urge anyone that doesn’t have a true understanding of it to reach out to a parent of an autistic child and ask questions.  We love to educate people about it.

It is only fitting for me that my book Second Chances is being released April 14th.  It is a fiction book, but centers around a single mom with an autistic child.  It is up for preorder now and can be found here.

A Journey Through Autism – Part V

Our journey continued as my son got ready to make the transition to the school system at age three from Early Intervention. I must say after hearing a number of horror stories, I was extremely nervous about having the IEP meeting for the first time. The school’s special education coordinator requested that my son’s speech pathologist be present at the meeting. What a surprise to have the school ask her what exactly she felt my son needed and then everything was implemented. It was a very smooth transition.

The next hurdle was that my son was still using sign language as his way of communicating and the school speech pathology was “rusty” in her usage of it. The school’s speech pathologist was very good about coming to the house near the end of my son’s Early Intervention time and sitting in on the sessions to “learn about him”.

The hardest part of the transition was moving on away from “Jude”, the Early Intervention speech pathologist. She had become my son’s life line. She had brought him out of his shell. He was out of the closet where had sat rocking. He was communicating, and we even had eye contact more times than not. My son was devastated to know that Jude wouldn’t be coming any more.

Starting with the school was a tough schedule for my son. Not only did they put him in a small preschool three days away, but he also has speech therapy twice a week and occupational therapy twice a week, overlapping so he was out of the house four days a week. It was a very regimented schedule. In the time frame, the family was in turmoil, which my son spent a lot of time shut down due the family dynamics. His father and I were going through a divorce, the house was for sale and we were getting ready to move in with my parents.

The summer before kindergarten started we finally settled in to a new house and settled into a routine that my son responded to. In June at kindergarten orientation, the occupational therapist had to take my son out of the room in order to do sensory therapy so he could function. He missed the whole orientation. By the time, school started in September, he was settled and functioning very well.

At the end of his kindergarten year, my son was placed on a “consult only” list for speech pathology. Occupational therapy was still seeing him at school once a week for sensory therapy. He was flourishing in school and loved it.

We were meeting yearly at that point to introduce his new teacher to his IEP. However, at the end of first grade I was told he no longer qualified for an IEP due to the fact that he was not academically delayed. After testing in the prior spring, he had tested with math at a fourth grade level as the highest level in academics and never tested less than at least six months older than he was. That meeting was the hardest one for me to sit in. The tears flowed as fear gripped me. What would happen to him? They decided to put him on a 504 plan, which still kept him with a list of cues for his teachers as to his diagnosis.

Years flew by it seemed as my son grew more and more skilled in coping with his autism. He would come to me and ask for sensory therapy, but as time went by it was fewer and fewer between times that he needed it. Usually more around holidays or vacations.

The hardest meeting I had to sit in was the year my son was in sixth grade. The tears flowed uncontrollably as I was told he no longer qualified for the 504 plan. He had progressed to the point that he handled things very well in stride. There are times he still shuts down a bit at home, but he can hold it together at school. This was what we had dreamed and strived for. The hard work paid off, but what a let down. After all the years of being an advocate for my son – and seeing my son work so hard to learn sign language and then speaking – the feeling of relief was overwhelming.

This child at age two couldn’t stand to be in a gymnasium without headphones, a vibrating teether and a weighed vest. At age 12, he know wants to be a NBA player and loves basketball to the point that he will shoot hoops all winter outside. It’s amazing to me that this child, who used to sit in a closet and rock, not make eye contact at all and have violent tendencies when he was frustrated, is now an honor student, an amazing athlete and is the most loving child I have ever seen. Every day when he hugs me and tells me he loves me, my heart swells. For a child that never would hug, every hug is meaningful and never taken for granted.

If I have learned anything from this journey it is you can’t take anything for granted. Every small step is a major victory.

Autism is an unknown disorder. Every child is different, which makes diagnosing the children harder.  One child may have more difficulty in speech while another speaks, but has more trouble with sensory and social issues. The children on this spectrum range with IQs from 10 to genius level.

It’s a spectrum that people need more education on. But in all that you hear in movies and talk shows where they show the worse case scenario – there are huge success stories out there like my son who had Early Intervention early in his left (13 months) and now you would never know unless you knew him when he was younger. Yes, he still has moments where he is overwhelmed and overloaded and needs help to come back to our world, but they are becoming fewer and farther between.

What a journey it is has been – one that is not finished, but I am fortunate to have been part of this journey.

Journey Through Autism – Part IV

As my son progressed through Early Intervention, symptoms of Autism became more and more clear to the speech pathologist. She brought in a behavioral specialist to help us learn how to get him out of the corner or the closet and entice him to interact more with us.

As he continued to sign more and more, his frustration level dropped and became more willing to be social. Although, he seemed to think by closing his eyes, he wouldn’t “hear” me speak to him.

Moving through this journey with him, stirred many emotions. At first there was denial that something could be wrong. Then anger. As I went to more and more classes on Autism offered through Early Intervention I learned about the grieving process for the child you had hoped for. As I look back now, I see how blessed I was through each step of this process with my eyes being opened to new possibilities and new obstacles. I saw my daughters react in similar, yet very different ways. My oldest daughter being five years older than my son was very soft hearted towards him. Being more gentle and giving in to him. My middle daughter, however, being only 18 months older then my son decided, “just come on” was her attitude. It didn’t matter that he was autistic, she instructed him on how to play with her. Both ways he responded to, though I must admit from me he responded best to a more militant style.

Sensory therapy before going anywhere, bring along the sensory bag filled with vibrating toys, sensory diet snacks became just a way of life. Was it exhausting? Absolutely. Where there rewards? Absolutely. I saw my son starting to respond more and more. Yes, there were definite times of shut down. Around holidays or any major changes in routine. However, being an advocate for my son and doing the sensory therapy for him allowed not only him to interact with the family, but made it less stressful for the family. It was a win-win situation.

At long last when my son was just turning three, he was given an official diagnosis of PDD-NOS. Pervasive Developmental Disorder, nonspecific. A diagnosis at the high functioning end of the autism spectrum. Once again we had validation.

Journey Through Autism – Part III

The journey continues with Early Intervention services. The speech pathologist that arrived was a bubbly, energetic person. Looking back, she became my son’s lifeline. Her first goal was to teach him sign language as a means to communicate. This isn’t an easy task when a child won’t make eye contact with you.

I learned what is known as pigeon signing. Basically instead of signing a sentence, you are signing just the key words in a sentence. Of course, to encourage eye contact, we were signing near our face so he would have to look at us. We were talking as we signed also so he could still hear the words associated with the signs.

Seeing my son pick up the signs and start to use them was a major victory step for us. He started signing at thirteen months and by the age of twenty-one months, he could sign well over 200 words. The violent tendencies stopped. The nonstop crying stopped.

The obstacles weren’t over yet though. At age two, the speech pathologist broached the subject of autism with me. She had worked with numerous autistic children, and the sensory issues were beginning to become more apparent in my son. I started to absorb everything I could read on the subject. It all seemed to fit.

We talked about how he wasn’t sleeping at night still. The very next visit, she showed up with a weighted blanket. It was a hand made blanket with ten slots in it. In each slot was a pound of washers fit together by a nylon. They could be removed to make the blanket lighter. The very first night I put it on my son at bedtime, he slept through the night. Sweet relief to have a full night’s sleep!

Suddenly right after his second birthday, my son stopped signing. Refused to do it, refused to look at anyone once again. If we signed to him, he would get angry. At a loss, I turned to the speech pathologist. She decided to experiment and started signing full sentences to him. Wow – what a change. It was exactly what he wanted and needed to progress. Within days he was back to signing and again, the violent tendencies stopped. He could communicate on a full level with us.

As he was progressing through Early Intervention, it became necessary to make my son his “signing book”. It was a book full of pictures and words of all the signs he could do. This is a book he carried with him if he went somewhere I wasn’t such as the Church’s Sunday School class. This helped his other “teachers” or baby-sitters to understand exactly what he was trying to say to them.

Continue with me next time for the tail end of my son’s Early Intervention years. Thanks for following this journey.

Journey Through Autism – Part II

I sit here preparing to write this blog, allowing myself to go back in time to when my son was an infant and this journey began, and it is difficult. It was a lonely time for me, even though I had two other children. A time where hurt, anger and yes, even resentment at times filled me.

This journey started as an unknown trek through uncharted territories. I knew there was something wrong with my son by the time he was three months old. I would lay him down on a blanket to play and he would just stare into space. No reaction to his sisters on the floor with him with baby toys trying to get his attention. When he wasn’t staring into space, he was crying. The crying really got to me. A crying baby I can handle, but one that cries harder when he is held? It started wearing on my confidence as a mom. The feelings of “what am I doing wrong?” and “what kind of a mother am I if I can’t console my child” filled me.

My sister would call from out of state and would hear the baby crying, and her first reaction was always “oh, he’s crying, I will talk with you later”. I would beg her not to hang up and to talk to me as I locked myself in the bathroom to try and find some peace.

As my son started crawling, his favorite place to head to was the family room closet. It was a closet that was pretty much empty. He would crawl to the side corner and sit in there and rock for hours. My feeling was that he’s a strange child, but he’s not crying.

At thirteen months, after violent hitting and biting whenever someone touched him, I called Early Intervention. As I said before, when they arrived and did the evaluation, he was evaluated to have verbal skills of a three month old. Validation broke me. I sat there with tears streaming down my face thinking it’s not me. There is something wrong.

By this point, as far as I could see, my son wouldn’t interact with his sisters very much – on occasion, but a lot of staring into space was still going on and he never made noises with the exception of crying. Speech delay, okay I could handle that.

Stay tuned for part III of our Journey Through Autism.

A Journey Through Autism – Part I

Taking life for granted – how often do we do this? Over the past eighteen years, I have learned a lot about small victories and taking things for granted.

Eighteen years ago my son was born. By the time he was three months old, I knew there was a problem. There were no smiles, no coos, and no eye contact. My son was in a very different world than I was and it tore me apart. As time went by, it occurred to me that there was something wrong with him and I didn’t know how to go about finding out what.

A friend of mine who has a Down’s syndrome son encouraged me to call Early Invention myself and get him evaluated. By the time he was thirteen months old, my son had his evaluation and was found to have the verbal skills of a three-month old. Validation. Validation that yes, my instincts were right. Validation that someone heard me and really listened.

Over the first year of Early Invention, we taught my son sign language. I spent every spare moment I had learning about nonverbal children and sensory issues. As the speech pathologist worked more and more with my son, the word autism came out. I researched and researched. A name for the problem – was it possible?

Autism is such a hard spectrum to diagnosis as every case is different. A neurological disorder from birth affecting speech, sensory, and social skills in these children, yet affecting each one differently. For my son, he was completely nonverbal to over the age of three and his sensory issues were plentiful. Social skills that come naturally to more children had to be grilled into him before he grasped conceptions of acknowledging someone speaking to him, sharing and interacting with his siblings and friends.

The road was set to be a long and hard one. Join me in walking through my son’s journey in coping with Autism over the next few days.