The social network for parents of kids with autism

The following is a personal story written by Amanda, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the journey that her family has been on since autism entered their lives almost three years ago. If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the accomplishments!

Amanda pictureI am a stay-at-home Mom, a wife, a lover of everything that sparkles and shines, a bit of a fashionista, somewhat of a diva, an exercise addict (it keeps me sane), and a bit OCD about the cleanliness of my house. I am also the biggest advocate for my son’s needs, his biggest cheerleader and believer! But more importantly I am Mommy to two wonderful boys, who by the way, have too much energy!

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Joey (ASD) is five-years-old now and just entered kindergarten/learning disabled classroom. He is an amazing little boy who has a very tenacious attitude towards work. He lights up a room when he enters it and over the years has touched many hearts. He is my love, he is my life and we are somewhat co-dependent on one another. Joey was diagnosed with autism at the age of two, and we have not stopped working hard since then.  He has been through so much. I hope and pray one day he will be able to tell me that all that I am trying to do for him was worth it.

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The Journey Begins

After Joey was diagnosed with autism I threw myself in head first trying to figure out how and what I needed to do to help my child. At the same time Pete (Joey’s little brother) was a newborn, and difficult to say the least. My husband had just started a new job, and I was at home almost all day, every day balancing therapies, researching therapies, and trying to do my best to help Joey; and just be Mom to both my boys who were both still babies (Joey was two-years-old and Pete was a newborn). As hard as I tried to keep it together, this time of my life was one of the darker times filled with feelings of hopelessness, sadness and depression; at the time, there seemed to be no end in sight.

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Six months after Joey was diagnosed I began to lose my hair. Now to know me, I was one of those girls with Breck girl hair! It was my thing. It made me feel beautiful. I’m not a confident person, have always struggled with self esteem, and when I began to lose my hair I thought, How am I going to make it through this time?

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I went to doctor after doctor, and was initially diagnosed with alopecia related to the stress and the doctors were hopeful it would grow back.  Two months after I began to lose my hair I was completely bald and was diagnosed with alopecia universalis. My whole physical identity had been stripped from me. I lost my eyebrows, eyelashes, and every other ounce of body hair. Nothing remained. I was a blank canvas and completely and utterly lost but I continued on…

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Why?

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For Joey, for both my boys. They needed me and they loved me unconditionally.

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It has been two and half years since I lost all my hair, (I wear wigs) and realize that the strength, hope, belief and love I thought I was giving Joey he was actually giving to me. This journey that Joey and I have traveled, thus far, has been an emotional roller coaster and by the grace of god I have found hope again through my son.

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Today

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We have seen huge gains with Joey, and most recently (this past summer) his language skills have begun to emerge. This has been a very exciting and rewarding time for me.  Because after all the tears and hard work, we are finally seeing progress and I’m hearing his little voice! This past summer for the first time I heard “I uv u”! I do believe that moment will forever be etched in my mind, and on the bad days I will go back to that moment.

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Pete is just as precious as Joey and sure knows how to push buttons. He just entered preschool and loves it. He so desperately wants Joey to be his buddy, and hopefully someday they will form a brotherly bond. Pete shows me not to take things for granted, just as Joey does, and to celebrate all milestones…little or big. My husband and I believe Pete was brought to us to help his big brother.

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Autism came into my family’s lives almost three years ago and I will not lie, it rocked my family to its core. This journey has had high’s so high that the emotion is virtually unexplainable, and we have had lows so low I’m not sure I can get through another day. I’m not sure why autism knocked on my door; maybe it thought I was the Mom for the job? I’m proving to myself everyday that I am strong enough to take what is thrown my way and my Joey, well, he proves to me everyday that miracles do happen. If you believe and hope and hold on to the positivity there is nothing a child cannot accomplish.

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How Do You Do It All?

The following is a personal story written by Alicia, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism.  Below she shares the story of how she and her family balance the challenges and triumphs of life.  If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the accomplishments!

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Just recently I was asked by a new friend, “How do you do it?” I responded somewhat perplexed. “How do I do what?” She went on to alicia pictureelaborate, asking me how do I raise three young boys, with two on the spectrum, while living on a single income and living with the constant pain of multiple sclerosis? I honestly rarely stop to ponder my situation because honestly I see it as a way of life and not a situation. Soon after, another friend asked me this and then I began to notice the number of parents on MyAutismTeam that were asking similar questions.

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And then I was asked to do a blog post on the subject. So here it goes, keep in mind I am no writer, I write from the heart, sometimes what I have to say is quite blunt and sometimes it will make you cry but it is what I live every day.

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Parenthood

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We entered the role of parenthood on a cold December day. After 12 hours on Pitocin my oldest son (Big Fry) was taken by C-section due to distress. He passed all APGAR tests with flying colors. From birth he was a baby that had wisdom beyond his years and has always had adult-like mannerisms and humor. We contributed this to being the first born, first grandchild on both sides, the only baby among all our friends. He was constantly surrounded by adults therefore he acted like an adult. His only delay was speech which we just assumed was due to us using sign language. When he was just 18 months, we had our second son (Medium Fry) and Big Fry’s response to having a new brother was to potty train himself. Medium Fry was a different story, he was 2 ½ months early and whisked away at birth due to me crashing on the table. He refused all contact (except mine) from birth onward, he refused to breast feed, and he refused the bottle. He was born at 5lbs 2oz and left the hospital four days later at 4lbs 1oz.

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They refused to keep Medium Fry at the hospital because he did better with me. It was a long rocky road and finally at the age of four Medium Fry received the Autism diagnosis, which was something we had decided around the age of one, but couldn’t get any doctors on-board. This diagnosis didn’t stop us from having a third son (Small Fry) whom was born just one year after Medium Fry’s diagnosis. Small Fry was born with a major but non-life threatening heart problem and severe food allergies. Around that same time Big Fry began to struggle in school. We contributed it to having a new needy brother at home. Lo and behold that was the beginning of all the tell tale signs of Autism in my oldest son. So this is how it all started, but still how do you do it?

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Life Rules

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There are three rules to surviving life with children on the spectrum and little did I know that these three rules were handed to me at a baby shower for Medium Fry. I was given a simple blue blanket that had words stitched on three sides; the words were Live, Love, LAF (I will tell you the significance of the misspelling later), with the final side having my middle son’s date-of-birth (my shower was after his birth since he was so early.) These three words have stayed with us through our entire journey.

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Live In my lifetime I have died twice, neither time were there white lights guiding me on to another place. The first time was horrific, to this day I remember the pain and hate that I felt at that time. The hatred was so intense that I vowed to change my life. I recovered and started my journey in helping children on the spectrum. I was only 14 at the time. The second time was during my middle son’s birth, I remember nothing but my husband tells me that I only returned to him after the nurse declared, “It’s a boy but I must take him.” How can we not live each day as if it’s our last? I want my boys to live a full and normal life, so we live in the moment. We cry when times get tough and we laugh when times are good. We struggle together as one through everything. Some people say I need to let go and let my boys live their own lives but my response to that is I will never let go. I give them space when needed but I’m always there to catch them if they fall. There is a poem my mom would always read me when I was younger. The poem stated the only gift a mother (or father) can give their children is roots and wings. Wings to allow them to soar to their fullest potential and roots to guide them home when they fall.

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Love is unconditional, love is blind. Love your children no matter what they do. We have no way of knowing the pain they feel, how hard it is for them to do daily life skills. But with unconditional love they can make it through everything. When my oldest son was diagnosed, I cried. The doctor, who knew our family well, looked at me and asked, “Why are you crying? You didn’t cry for your middle child so why do you cry for you oldest?” I said, “This can’t be, I knew something was different with my youngest from birth but my oldest is so normal.”

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At that point in time I was given the best words of wisdom. The doctor looked at me and said, “Does this one word (Autism) change who your son is, does it change who he will be, and most of all does it change how much you love him?”

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Does it?

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Think, do you love your child any less now that you know why they struggle? If you are like me, it is just the opposite; you love them even more. Don’t get me wrong my boys are a challenge but to be honest I find my NT child way more of a challenge than my two on the spectrum. Times get hard but I love them through it. Pull everyone you can into your circle of love, it is contagious. If they see your pure admiration for your kids, they will also feel it. And honestly the more people you have in your circle the better it is.

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LAF We spell laugh this way because L.A.F. are my son’s initials. Little did we know how much he was going to make us laugh. When you laugh at the little hitches in your life you feel better. Stress goes away, solutions become evident. When times are tough, let your mind wander to a time when your child has made you laugh. If your life is anything like ours, your mind won’t have to wander far. On any given day, I can count the melt downs on one hand. But most days the number of times my boys make me laugh are far more than the number of fingers on my hand. The good does outweigh the bad and we often just need to sit back and remember.

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So Live, Love, and LAF. My boys were a gift from god and though his plan is sometimes unclear I know he only deals us what we can handle. Put your faith in yourself and know you can handle life on the spectrum.

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Our Story – My Tristan

The following is a personal story written by Juliet, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism.  Below she shares the story of her family and her son Tristan.  If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the triumphs!

He was extremely colicky as an infant. Midnight car rides almost every night, he slept no longer than a couple hours, at most,Tristan during the day, and began digestive issues as young as two months old.  Literally, my husband and I were tired and grumpy all the time hoping this stage would someday be behind us.

Tristan, now 4 years old, hit all his major milestones up until two years old, but there had always been something a little peculiar about my little guy.  He spoke a few words here and there but nothing distinguishable to a non-parent. When Tristan was excited, he would jump up and down flapping his arms. And we just said to ourselves, “oh, how cute! He loves to watch football!”

At 3 years old, when most parents begin preschool preparation I was racking my brain telling myself, “I don’t think my little guy is ready. Actually, I know he is not ready.”  My biggest concern and the anxiety he demonstrated the most was being around others – children, adults, and even family. Socially, I knew he was behind – way behind.

Outside of routine trips to the store ,such as Costco, refusing to be separated by Mommy and the check-out counter, or regular phrases such as “I’m scared” when approached by anyone other than an immediate family member– it was the sum of these situations that my husband and I realized we had to make something happen on our own.

I immediately met with Tristan’s pediatrician, I should note that my concerns were not new to her either, but I pressed it further and she supported our request.  Our next visit was with a Pediatric Neurologist about an hour outside of town who instructed us to contact out local regional center.  After some research of my own, I also decided to contact our local school district to get him tested for academic purposes since he was of school age (being 3 years old).

The tests and evaluations were moving on the fast lane, it was continuous evaluations for 3-4 weeks.  Lucky me, and lucky for my son he loved puzzles and games.  So he was having one party after another for a month. Final assessments came in both from the regional center and the school district within days of each other and both were in agreement that my son had PDD-NOS, known as Pervasive Developmental Disorder – Not Otherwise Specified. It was extensive-wordy diagnosis with an awkward title but we now had an official diagnosis for my son.

In my son’s case, he exhibited most of the elements of being autistic but because of the mildness of his characteristics he did not have Autism, but better put he had Autism Spectrum Disorder.  We shared the diagnosis with the school district who then discussed possible therapies to help Tristan begin moving in the right direction.  They laid out two possible therapy sites both using applied behavioral analysis (known as ABA), and even set up visits for me to the two locations. After the visits, it was clear which would be the best fit for my son.

In order to move forward with the ABA at Applied Behavioral Consultants, ABC School, they had to conduct their own evaluation of Tristan to create a personalized program to fit his areas of needs. Over a period of a month, ABC School finally concluded their assessments and they began Tristan on a “slow start.”  A “slow start” just meant he would begin half day and gradually add on an hour or so until he was able to manage a 8am-3:30pm schedule at five days a week.

Let me tell you mom and dad – the first week was, of course, the biggest transition. Which meant every morning; I would hear my little guy declare, “no school Mommy, no school.”  And for many days, I would do my best to console and reassure him that everything would be ok.  Even though, I too had doubts. Not because I didn’t think we were making the right decision but more else that I too was scared as we were taking this journey together…blindly. As soon as I would drop him off at school, there was clinging to the legs, clothes, screaming, crying – some of that from Mommy too.  Yes, the first couple days I sobbed as I held my daughter’s hand walking to the car hearing my son screaming from inside the building.

Tristan artworkBut all that eventually ended and now almost five months into his ABA therapy – my Tristan is doing amazing.  He was evaluated for occupational therapy (it was recommended at the beginning of the school district evaluations but has improved drastically since then and so was deemed not needing occupational therapy at this time) and she had relayed that he was “the most developed child she had seen in the last ten years.”

Just over this last year, I have come to realize more clearly how blessed and gifted that my son is.  Because of his love to learn, he has exponentially grown in his academics even at four years of age.  And now loves school! In the fall, we enrolled him in a mainstream pre-kindergarten, so with the balance of both ABA therapy and pre-k he is doing wonderfully!

We are so grateful for the amazing specialists, teachers, doctors, and individuals who have had an impact, both big and small, in our lives to create this journey that we’ve been on with our son. Autism Spectrum Disorder has become a blessing in disguise and is a part of who my son is.  And we wouldn’t have it any other way.

If you are the parent of an individual with autism you can join MyAutismTeam for free at http://www.MyAutismTeam.com.

 

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The following is a personal story written by Kristin, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the lessons that she has learned incorporating her extended family into her son’s life.  If you are a parent of child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days and bad days and the triumphs!

KristinThis time of year my favorite for one main reason—the food! Seeing extended family and getting time off from school or work is also a bonus. Sometimes spending time with your extended family can be a hassle, especially if you have different circumstances than the rest of your family.

My son happens to be the only child with any sort of special needs (ASD) on either side of the family, which can make the holidays stressful. Yes, getting my son to do something other than climb the stairs over and over again is frustrating, but that’s not the main stressor, the extended family is. We all love our families (hopefully!), but sometimes things aren’t all pleasant.

I remember how interactions with my son went at the first family gathering following his diagnosis. It was nearly nonexistent. We have two doctors in the family, so they interacted with my son, but others didn’t. Over time I began to notice a trend in who would make an effort to talk to and play with my son, but also that did not. I even conducted an informal experiment to see how often my extended family interacted with my son last Thanksgiving. You know what I found? The family members who barely engaged my son had little to no knowledge about autism.

It can be so easy to just get angry, assume they don’t want to be a part of your child’s life, or even dislike your child. Try not to jump to conclusions and think about why certain family members avoid your child. There could be a whole host of completely rational reasons why they avoid your child.

Here are some reasons that I have found to be true:

  • They don’t know how to interact with your child. This is the most common reason that I encounter. Not everyone is as versed on the ins and outs of autism as us ASD parents. Telling your family that your child has autism may not be enough to prompt investigation on their part. Try bringing your child up in casual conversation and state how they should interact with your child. For example, you could say “Talking to him like we would other children is most beneficial for him,” or “we typically talk to him with short, specific sentences,” to emphasize how to communicate with your child. I did this exact thing with my siblings-in-law to let them know that we talk to our son just like we would any other kid. Modeling it also helps. I noticed that a few of them began to make consistent efforts to interact with my son after that.
  • They want to help, but don’t know how. I specifically noticed this with my mother-in-law. She wants to help, but doesn’t really know what to do. She used to repeat herself over and over again to my son, trying to help, but it just made us angry. We felt like she assumed our son was unintelligent. Turns out, she was told that repetition helps with learning. She took that too literally, hence the repetitious nature of her conversations with my son. When she last visited, we actually told her about things he was working on at school and asked that she practice those things, too. One thing in specific was hugging. My son is very affectionate, but in unique ways. He has been learning to hug at school, so we told her about it and asked her to do it. When he did hug her, she was so proud! She even instructed my father-in-law to start doing it, too!
  • Awareness is crucial.  The simple act of knowing has major influential effects on how people behave. I can attest to this myself. Even as a parent to a child with autism, I still find that initially I feel a little bit of anxiety when initially meeting a new child with ASD. The more exposure I have, the more comfortable I feel. I am an undergraduate research assistant in an Applied Behavior Science program, so I interact with children with ASD all the time. The more time I spend with these kids, the more comfortable I get with new children and new issues. Just try to inform your extended family about your child’s situation. This can be formal and informal. Chances are your family may have some idea that autism is something that it really isn’t. Express the great things your child does as well as struggles (chance to ask for help!).

I have noticed that the more information I provide to my family, the more they want to interact with my son and ask about his progress. It is so important to not jump to conclusions and get angry. Let’s be honest, raising a child with ASD is hard work. Why add more work and stress to your load? Try to enjoy the holidays, eat lots of yummy food, and teach your child some new social skills. And if some family member refuses to be social with your child, then don’t sweat it. Your child needs to be surrounded by supportive and loving people anyways.

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MAT-50000
MyAutismTeam, the social network for parents of children of all ages with autism, today announced a new milestone of 50,000 registered parents.

 

MyAutismTeam attributes the rapid growth of the social network to pent up demand and word-of-mouth amongst parents of individuals with autism, unique product features based on parent feedback, and partnerships with leading autism organizations.

 

For parents of children (from infants to adults) with autism, MyAutismTeam is the social network for parents to meet other parents who understand the daily ups and downs that come with parenting an individual with autism. Through shared tips, ideas, referrals, and general support, the parents of MyAutismTeam make real and lasting connections with other parents.

 

Since MyAutismTeam launched in 2011, parents have made more than 500,000 connections on the site. From discussions on effective therapies and finding the dentist or barber who “get it,” to tips on everything from insurance coverage to implementing a successful bedtime routine, the parents of MyAutismTeam share openly and honestly about their daily issues, concerns and triumphs.

 

“It’s been amazing to see MyAutismTeam grow from 35 parents two years ago, to 50,000 parents today because it means that more and more parents are finding the support they need,” says Eric Peacock, co-founder and CEO of MyAutismTeam. “However, with estimates that 1 in 50 children will be diagnosed with autism in the United States, we know that are many more parents out there that need to connect with parents on MyAutismTeam. Our goal is to continue getting the word out to all parents who have children on the spectrum, and our partner organizations will play a critical role in that.”

 

Autism Speaks, the world’s leading autism and science advocacy organization, a partner of MyAutismTeam since the community launched, recognizes the value of the connections made by parents on MyAutismTeam.

 

“Parents of individuals with autism are amazing people helping their children live fulfilling and rewarding lives,” said Lisa Goring, vice president of Family Services at Autism Speaks. “MyAutismTeam provides an invaluable community in which parents can support and learn from each other. Our partnership with MyAutismTeam is just one of the many ways we continue to bring the best possible resources to families impacted by autism.”

Most parents of kids with autism constantly ask themselves, “Am I doing enough to help my child?”  And yet, thousands agree on a specific type of therapy that they feel has helped their child most: occupational therapy.  We’ve asked over 40,000 parents of kids with autism on MyAutismTeam “What therapies, if any, work best for your child?”  Out of all responses, the number one answer was occupational therapy (OT).

When we explored this area more with our parents to find out why OT was so useful, and how to pick the right OT for your child, two tips surfaced:

Tip 1: Finding an OT Trained in Sensory Processing Disorder or Sensory Integration Can Make a Huge Difference for Your Child

Useful skills for sensory overload

“Five minutes with [our  OT trained in Sensory Integration] and we had a wealth of information on techniques for calming [when overstimulated], ideas for a sensory diet [that helps prevent sensory overload], and tools for managing crises.  [For each skill] our OT provided us with a hands-on demonstration for how to work with our child [so that we could do it ourselves].”

The “sensory diet” can be incorporated into the school setting

“Our OT not only explained the sensory issues our son had, but she [also] gave us strategies [and a written 'sensory diet'] so that he can be as independent as possible.  A lot of the activities in his sensory diet can be incorporated into his daily routines.  His school also has a copy, and his IEP states that he can be given sensory breaks when needed.”

Sensory issues impact all areas of day-to-day living

“Both outside and school occupational therapy have helped our now 14 year old son [with everything from] being able to be hugged, to touching food with his fingers, [avoiding] hand cramps from being so forceful when using a pencil,…wiping his mouth with a napkin, [and] putting his face under the shower water.”

Tip 2: Partner with Your OT and Reinforce the Goals at Home  

“Even the greatest OT needs help and support from the family.  Take what the OT teaches and then add skills done at home to reinforce the goal of your child living [independently] in society.”

“You know a great OT when they have a one-on-one with you and they take what you say into the therapy room.  They let you see what they are doing and they give you homework!  OT has to be done at home by you!  It doesn’t start and stop with the therapist.”

“Our OT never made our family feel like we were not doing things right, and she was super supportive in finding answers to the questions we had.  She really listened to what we thought his major challenges were and we worked together from there.”

Warm Reception from OT’s

Last week we shared these results with OT’s who specialize in autism at the American Occupational Therapy Association‘s Annual Conference in San Diego.   They were thrilled to see the response to OT by parents in the autism community and genuinely hungry to hear the parent perspectives and anecdotes about autism and OT.  We were swamped with questions following the talk and really moved by the passion of the OT community to make a difference in the lives of individuals with autism.

If you already have an OT that you and your child love, please be sure to add them to your team on MyAutismTeam.com, today.  If you’re looking for an OT, follow the tips above and start your search by connecting with parents on MyAutismTeam near you to see which OT’s they are using.

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More information on Occupational Therapy

Occupational therapists (OT’s) and Occupational Therapist Assistants (OTA’s) help individuals with autism gain independence and participate more fully in life by integrating cognitive, physical and motor skills.

These skills might include:

- Daily living skills (dressing, grooming, going to the bathroom)
- Fine motor skills (writing and cutting with scissors)
- Gross motor skills
- Playing, coping, sharing, self-regulation, and social skills

By definition, occupational therapy is tailored to the specific developmental needs of the child – and the will evolve as the the child turns into an adolescent and an adult.

Other good reads:

The Autism Speaks 100 Day Kit has a primer on OT and other therapies that is quite useful.

What to Ask of an Occupational Therapist” – from The Thinking Person’s Guide to Autism offers more information on sensory diets and everything else your OT can help you with.

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