Some Guidance for a Mom Still Learning to Navigate Her Son's Diagnosis

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Jaden and me 2 We accepted that autism will be part of our lives long before we had a diagnosis. This was mostly due to a wonderful speech therapist who I believe was put on this earth to make us ready to accept that our son is different. It took about 18 months for the word “autism” to first be mentioned, and I drove myself crazy for at least 12 of those 18 months (maybe even more).

This is what I would tell myself if I had the chance:

Don’t try to change it. You can’t.

Realizing this would have saved me so much anxiety, stress and even money. While still in denial, we tried everything we possibly could to get him out of his world and to get him to stop doing the stereotypical things you might find with kids on the spectrum. We took away all his cars so the temptation of spinning wheels would not be so intense. Whenever he found a car, turned it around and started spinning the wheels, the whole house would fall quiet with everyone watching him, the atmosphere so tense you could cut it with a knife. We tried every remedy in the book that was within our means to help him function normally. It took awhile, but we finally accepted that he is who he is and he’s happy. He’s not spinning wheels anymore but is obsessed with lights and will switch them on and off for hours. Or he will open and close a door continuously throughout the day. One day, he will lose interest in the lights and the doors and other repetitive behaviors will emerge. And that will be OK.

You will lose some friends and gain some new friends.

And it will be OK. You quickly learn who you can depend on when you’re going through a difficult situation. We quickly saw that we do have friends who are not even a bit interested in our situation or the struggles we’re facing. Friends with a “just get over it” attitude or friends who never tried to put themselves in our shoes to try and comprehend how difficult it is the day you realize your son has special needs. It’s not that we expected everyone to be touched in the same way by the diagnosis or that we expected some special treatment. Unfortunately, autism put everything else in perspective for us. We can’t spend time with people who make us feel like overprotective parents when we constantly have to get up in a middle of a conversation to see where Jaden is (because he will take to the streets if he gets half a chance). We limit the time we spend with people who tell us how we shouldn’t believe what all the experts are telling us. We don’t spend as much time with friends in general as before the diagnosis, because after a week of therapies, strategies implemented at home, meltdowns and communication difficulties, sometimes we just want to be together as a family over a weekend. And we need people in our lives that understand this. Not everyone does, and it’s OK. We’ve made stronger bonds with other friends we already had. We have friends who cry with us, ask how they can make things easier for Jaden when we visit and really try to understand how our lives are different from theirs. We’re meeting new parents with kids on the spectrum, and we learn from them. We’re spending less time with other friends and know this might lead to the end of those friendships. And that’s OK.

God will provide in many ways.

We’re struggling financially and paying for all the therapies and treatments is a huge struggle. The anxiety and sleepless nights I experienced because of this overwhelmed me so much that I felt I could not go on with normal life sometimes. I was angry that we couldn’t give him all the treatment he needed and I felt we were failing him because we couldn’t afford the other 110 strategies out there to help him. I still stress about finances constantly and pray for a job with a better salary almost daily. But God has provided in so many ways. People in our lives have been so generous, and I’m humbled by their sincere offers of help. I still wish we could provide for all his needs on our own, but autism has taught me to put my pride aside and see the hearts of the people in our lives that God is using to help us.

Learn to grow a thick skin.

I could write a whole blog post on things people have said that have been insensitive and hurtful, made me feel guiltier than I already did or even made me laugh at the stupidity of what is being said. And most people with a kid on the spectrum will relate, because those comments are made over and over and over again. People say things that hurt. Family members get involved when they shouldn’t or sometimes don’t get involved when they should. I cried many nights over what someone did or didn’t say or do, but I’ve learned that most people come from a place of love and sometimes deliver their messages in a wrong way. I’ve grown a thicker skin — and I’m still growing. I still wish the people closest to me would sometimes think before they speak, but when they don’t, I smile and nod, change the subject and try not to think about it again.

Stop Googling the word “autism.”

Just stop. Take a break from reading about autism on the Internet for awhile. And then, when you really need to Google, change the words. Google things like “visual schedules,” “Makaton” and “vestibular activities.” Googling the word “autism” and looking at the symptoms will not help Jaden in any way. I now only research specific things that I know will help Jaden at this moment. I’m not looking for answers regarding autism anymore; I’m looking for guidance on specific strategies that I find helpful.

Everything will be OK.

You will cope with it. You and your family will find a new normal. You don’t know any better, so this is your normal. Bit by bit, you will get the opportunity to be a special kind of mom with a special kind of relationship with Jaden. And you will love every moment of it.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Autism Didn't Change My Son. It Changed Us.

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20130916-DSC_8518 If I could go back to December 17, 2011, I would want to make myself sit down with someone — a professional or trusted figure — and just let out the complex feelings I tried to put a resolute demeanor over. We weren’t surprised to receive an autism diagnosis for our 3-year-old son; we were relieved to have an answer.

It was a new starting point. What I dreaded most was to see my son diminished in the eyes of others. I would not stand for that. A day later we went to a family Christmas gathering where I tearfully declared, “Our dreams and wishes for our son are unchanged.” In the essentials of life — love and faith and family — nothing had changed. Jeremiah had not changed.

We were the ones who would, by almost imperceptible degrees, change.

We would change our stance. When you typically begin to walk down an unfamiliar diagnosis road, you join a new subculture. To broadly define the two options of the autism spectrum disorder spectrum, you have 1) Change and Cure and 2) Accept and Support. Of course, these are simplistic categories, but we started unabashedly in the first category. We began therapies (a good thing) and schooling and paperwork and lastly, an approach to autism intervention. I regret none of these. We learned more about our son’s unique style of learning and worked through our own prejudices and barriers to parenting a child who approached the world in a way unfamiliar to us. Then, after a few years, we stopped and re-evaluated. This is the most important step, I believe, to helping your child. We gave ourselves permission to keep the good and abandon what was not working for our family. No philosophy or therapeutic approach is more important than the health of the entire family. We were tired. We had reached an end of one approach and it was OK.

It’s good to go your own way. This is truly one of the best lessons I’ve learned from being a parent of a child with a disability. Doctors and professionals are valuable resources, and it’s wise to examine the course of options they present. But you know your child and yourself best. Trust your instincts and judgment. You are the parent. You do know best. You are the most vested. Examine everything, make a choice and walk boldly in it. Fear is a terrible motivator.

We would laugh with our son. With his sly methods of getting his way and his way of showing excitement — to rehearse over and over the next time he would see someone or someplace he loved. We would hoot and holler as he took ownership of the toilet, a big deal for any child. I would hear my first “I love you” from my son, as he approached my door after bedtime, knowing this would most definitely get him time in my room. We would enjoy his newfound interest in drawing, not to mention riding his first big bike and loving it, undaunted by the falls. Slow and steady wins the race.

We continue to learn that the best place for our son to be is the place where he will thrive. Right now, that is in a special education classroom. He has excellent teachers who understand his needs. He is not lost. He would be lost in a regular classroom, though I dream one day this will be possible. My son has teachers that see him and value him. That’s more than enough.

We have a son that makes us laugh, cry, roll our eyes and cheer. Sometimes I lose my patience and remind him to “cool it, buddy” when he’s asked to see Papa for the tenth time that minute. I can discipline in haste.

But I love and appreciate my world and the wonder of life more that I ever would have before.

So, I would say this to myself on the day we got the diagnosis: Sweetheart, it’s gonna be more than all right.

This post originally appeared on The Jaybird Blog.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When I Finally Realized My Son Would Not Be Like Other Children

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My journey from pregnancy to the birth of my son, Tyler, was unremarkable. I had no issues getting pregnant, the pregnancy was uneventful and my delivery at age 32 was enviable. His first year of life was not without challenges, but being my firstborn, I didn’t suspect anything was “wrong.”

He wasn’t typical by any means, but I didn’t suspect anything was up until after his MMR shot at 14 months. It was then that he stopped eating everything. He wouldn’t interact with any of the children in my weekly mom’s playgroup. He was exceptionally bright and talked at 14 months. He was obsessed with things that went “around and around” (his first words, by the way). His was picky with his food choices, he was annoyed by certain sounds that led him to inconsolable fits and he was aggressive toward other children and didn’t like to be touched in certain ways. He was overly clumsy, hard to put to sleep and had trouble adapting to any change. At some things, he excelled. At others, he was way behind. He didn’t feed himself until age 2.5, and didn’t potty train until 3 years and 4 months.

At the age of 3, I enrolled him in preschool. Although the people there were wonderful, his challenges to conform were too great. I was told to find another place for my child. My journey led me to a private school for gifted children; an IQ test administered by a psychologist during our divorce custody evaluation indicated he was quite bright. Later on, I would hear the term “twice gifted.”

As Tyler journeyed through elementary school, it was anything but smooth. His struggles increased. Every first teacher conference of the year was met with dread. “We think your son has ADD,” came the first diagnosis from his teacher. The next year, it was ADHD. The following year, Sensory Integration Disorder. Social Anxiety Disorder. Oppositional Defiant Disorder. For every suspected diagnosis, I paid for an evaluation out of pocket.

By the end of second grade, we’d worn out the little private school and my son was kicked out with only ten days left in the school year. With urging from my dad, a public school teacher, I enrolled Tyler in public school. He said I could get help for Tyler there. During the first year, of course, his struggles continued. I asked the school to do an evaluation. Their response was, “He’s not struggling academically so there is no need.” They just assumed he was a difficult child, probably in need of better parenting. But by grade six and after many meetings with me, they figured out that I was not a negligent parent and that there may be something going on with my son.

Evaluations were ordered. I sought out the counsel of yet another psychologist. I kept thinking to myself, There has to be someone who can get inside this kid’s head and understand what’s going on in there, because I cannot. And finally, I got someone who quantifiably put it all together into a diagnosis of Asperger syndrome. There it was — my son explained. I, of course, went through the push-pull struggle of wondering what this would mean for my son to have this label. Would it stigmatize him for life, or would it get him the help he so desperately needs?

Tyler I think there comes a time in every ASD parent’s struggle when you have to realize your child will never be so-called “normal.” Later on, I would come to understand that at the root of these issues was a neurologically-based disorder;  he wasn’t a bad child. I wasn’t a horrible parent, (although we all go through this as our kids make awful displays for all to see). I finally came to the realization that Tyler would not be like other children. There would be no playing team sports, no proms, no homecoming dances because he had no interest in those things. So what was important here, really? My consensus was this: as long as my child is healthy, happy and can make a life for himself, that’s what’s important.

I’m happy to report that as Tyler is about to turn 23. He has a full-time job as a programmer. He secured that job after two paid summer internships at that company. He did several years in college, doing well in the technical classes but failing at the general education classes. Tyler was challenged when it came to writing papers. His interest in computers, however, was his saving grace. I never limited his access to them; I could have tried, but he was smart enough to circumvent any controls I might have thought I could set. On his own he learned to build, repair and program computers. His passion proved to later serve him as his profession. He now lives in a brand new town home he bought with the help of his father. His kind heart is allowing his younger sibling to live there rent free, as long as she cooks, cleans and shops for him.

During childhood, my youngest child complained miserably about Tyler’s sometimes aggressive nature during play, and I would constantly get complaints that I wasn’t hard enough on Tyler. As any ASD parent will tell you, discipline is difficult. First, traditional approaches don’t work. Second, anything you thought you knew about parenting a child like this goes out the window. And third, they are so smart they can outwit you many times, thus teaching you a thing or two. The good news is that a few years ago, when my youngest was about to turn 17, I heard, “Mom, I’m so glad you had this kid.” That’s the most heartwarming thing a parent could hear. The two of them are so close now, and Tyler takes care of his sister.

These children are not easy to raise — that is true. You question yourself and wonder if you’re doing the right things. However, there are so many gifts that came with Tyler. He taught me that things I thought were important — like dressing up for a theater outing — were not really that important. In seeking help for him, I’ve found my own passion: I left the IT world and am now finishing a Master’s in Acupuncture at age 55. It’s never too late. As an adult, Tyler has acknowledged how difficult it must have been to raise him. He has shown great gratitude to me for all the time, money and energy I put toward getting him where he is today. What more could a parent ask for?

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Why It Was Necessary for Us to Mourn Autism for 24 Hours

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Thinking back on when I first began trying to get pregnant, I recall conversations before, during and after visits to the OB/GYN between my husband and I as we weighed our options for conceiving the child we’d talked about so many times. In my early 20’s, I found out that I have a syndrome which would likely give me about a 20 percent chance of getting pregnant. To say we were devastated is an understatement. We were crushed.

My well-intentioned doctor, who sees couples like us all the time, was quick to offer a prescription for an infertility drug. When asked about potential side effects, the doctor quipped, “Twins!” That side-effect alone was enough to scare us, so I never filled the prescription. We decided we would commit to trying naturally for at least a year.

Fast-forward five months to a day I won’t soon forget. I took one of those home pregnancy tests that you can barely make sense of on a good day, let alone in a dark bathroom at 6 a.m. Pretty sure I read the instructions about the single line and double line a trillion times after the stick showed double lines. “No way,” I thought. “This cannot be right. Oh my goodness, I think I’m actually pregnant.” I proceeded to the couch to sit with our new Great Dane, in whom I confided my new secret.

We visited our doctor, who confirmed the pregnancy. What followed was several stressful weeks of worrying because the doctor and nurse repeatedly told me I would likely miscarry due to the hCG numbers not doubling as they should have been.

Well, I can tell you one thing. We proved each of them wrong, because I gave birth to that beautiful baby boy in May 2010. He had ten fingers and ten toes. He was perfect.

Soon, however, things just didn’t seem right. From the infancy stage, we recognized behaviors that just seemed “off.” He slept all day and was up all night crying. That doesn’t sound too unusual, right? Right. Until you factor in that touching or cuddling him to calm him only seemed to agitate him and make him cry harder and longer. Being a first-time mom, I didn’t think much of this except that I was frustrated. I was feeling like a failure. Nothing I did would calm him except rocking, and even that only worked sometimes. As he grew older, we noticed more and more delays that became as obvious as a smack in the face at each well visit. We always had to fill out a “milestone survey” to assess his development. Each time (even to this day), I’m never able to complete the entire survey because you have to stop once you have circled three “no” responses.  Each time, this seemingly innocuous exercise gets me choked up.

After multiple assessments during and between well visits, we were referred to a state-funded early intervention program. They assess your child for developmental delays and will enroll him or her into the program if your child is under age 3 and meets the designated criteria. Since our son was just barely walking and pulling himself up at 21 months old and since he was still not speaking, he qualified for the program with no problem. He began receiving OT (occupational therapy), PT (physical therapy), speech therapy and an in-home early interventionist who worked with him on a combination of all three.

After months of various therapies, we continued to hear the phrase “sensory processing disorder.” Throughout this time, everyone kind of tiptoed around the autism diagnosis. In retrospect, I believe that those who were working closely with our family didn’t feel we would be able to hear the “A” word.  These people, who became like family to us, seemed to know us better than we knew ourselves.

As our son was rapidly approaching age 3, he had to be evaluated by a behavioral psychologist to receive a formal diagnosis that would follow him into the public school system. After several visits that encompassed surveys, evaluations and lots of paperwork, it came. The formal diagnosis was given to us in the same room in which our son had been evaluated. It was a square room that somewhat resembled a preschool classroom, yet felt way more clinical. My palms were sweaty and my heart was racing as the psychologist detailed all that led up to his final conclusion. All I can remember hearing was: 1) Your son is on the autism spectrum, and 2) Your son’s developmental age is 4 months. I’m not sure which of those two statements was more difficult to hear in that moment — to be told that your almost 3-year-old child is functioning developmentally as a 4-month-old is devastating. In that moment, I wanted to scream at the doctor and call him a liar. He may as well have driven a knife through our hearts because that’s how we felt when hearing our child was autistic. Denial, yep, we were right there.

The phrase “24 hours of mourning autism” is not exaggerated. Twenty-four hours of mourning autism is precisely what we did. I was fortunate to have a friend who works with kids on the spectrum, so I called her the same day we received the diagnosis. She’s ultimately the reason we only mourned our son’s diagnosis for a single day; she made us realize that a diagnosis was not the end of the world. Our child was still the same child he was before receiving a diagnosis. This diagnosis was going to open doors for him to receive services when he transitioned into public school.

Don’t get me wrong, we are not happy that our son is developmentally delayed. We are not happy that he now has an autism label attached to him, along with the stigma it brings. We are not OK with any of this. However, during the 24 hours following the reverberation of the word “autism,” we mourned. We allowed ourselves to feel everything we heard from the doctor. We reflected on our journey up to that point. We realized that this diagnosis was not going away. We needed to put all of our energy into helping our son, just as we had been doing the entire year prior. Remember, he was born against the odds given to him by medical professionals. There was no way we were going to let this diagnosis beat us down.

If I could give just one piece of advice to anyone starting on this same journey, it would be this: Cry, scream and stomp. Feel what you are feeling, but don’t stay in that dark place for long. Feel it, absorb it and then resolve to move forward to get your child the help he or she needs. Denial is not the solution, but action is the resolution.

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The Important Reason I Need to Thank My Daughter

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On the day you were born you were placed in my arms, and I held you so very close, caressing your face. I kissed your sweet little baby nose.

At home I held you tight and rocked you in a warm embrace. Oh, how I loved kissing your kissable face.

Weeks and months went by so fast, as they always do, and I watched you grow. You crawled, you walked and climbed. You smiled at me when I’d say, “No.”

I heard you say, “Dada Dada… Mama Mama.” You loved to play peek-a-boo. You were our happy smiling baby; you’d giggle and laugh and then we would laugh too.

Then… I watched as you stopped looking at us; you didn’t want to be held or hugged or kissed at all. I watched you rock and bang your head, flap your arms, spin and twirl. You stopped saying “Dada Dada… Mama Mama,” and you became a different little girl.

I watch you now as you try so hard to get words out of your mouth that you just can’t say; you scream and cry and become frustrated at fighting so hard to find your way.

I miss hugging you, kissing your beautiful face and sweet baby nose, holding your hand and picking you up.

You’ve begun to let us in and become a part of your unique little world, and you’ve shown us that you are still our beautiful, happy, smiling baby girl.

You’ve taught me how to fight and use my own voice and to be your voice too. I’ve learned so much about life, love, patience and hope all because of you.

You came into this world early and fast, dancing to the beat of your own drum. I still can’t believe what a beautiful gift I’ve been given. Thank you for choosing me as your mom.

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The Facebook Post I Made the Day My Daughter Was Diagnosed With Autism

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Below is the letter I wrote two years ago on Facebook to announce our little girl was diagnosed with autism. Now, I often look back at this post (a blessing and a curse of being a writer). My first impression is that this women was fearless. She came home right after her daughter was diagnosed with a lifetime disability and made the news public to all 204 of her family and friends. She was unashamed, blatant, bold and, above all, honest. This was my post…

Almost from the first week we brought Gabby home, I knew something was different with my baby. She would cry for two-four hours straight at night, almost every night. I would nurse, rock, walk and bounce her till she passed out. The doctors had no clue. We did all the tests they could think of, and she was labeled a difficult baby.

By 2, she was hardly talking, but physically she was kicking all our butts. As she grew stronger, it was harder and harder to control her tantrums and fits. We gave up going out to eat, and soon we stayed close to home or parks unless we had two people.

By 3, she was in speech and occupational therapy, and she showed little to no improvements. She grew taller and her weight soared to a whopping 40 pounds. We had more people than I can count tell me I needed to discipline my child or spank her, but I knew that just made the tantrums worse. We had to bear hug her and pat her back till she would calm down, and then it was like nothing happened. For the last two years I’ve been the lady in Wal-Mart holding down my girl while people walk by and see a 3-year-old having a tantrum.

Last week after running a bunch of tests, Gabby was diagnosed with autism. We’re both relieved and devastated with the news. I know God has a plan for our life and Gabby’s as well. So for now we are going to be faithful and trust in him to lead us through the next chapter with our little girl. Prayers are welcome and appreciated.

Then I remembered the feelings that went along with this post: I was scared. Probably the most scared I’ve ever been in my life. As I posted this message to my family and friends, I realize I did it because I was so afraid that if I didn’t say it out loud that day, I might never have the courage. I blurted it out for my family and friends to see because I thought if I didn’t share it, it would be taken as me being ashamed of her or trying to hide it. I came right out with it and took the “loud and proud” approach to sharing the news that my child was diagnosed with autism when in retrospect, I was devastated.

So devastated that I spent the majority of the next two weeks heartbroken and crying. This was mostly because I didn’t understand what this meant for her and how we were going to manage. Not knowing if she would be OK was the most frightening part. Next, I spent a few days being pissed off and stressed and asking God, “Why us?” Finally, I crumbled for a few days and hid in the house. Then, I finally got up. Not because I wanted to get up, but because I had a husband leaving on a trip and a daughter to take care of. Just because I was grieving didn’t mean I didn’t have responsibilities. So I got back on the horse, you could say, and I got on with our life.

I scoured libraries and the Internet trying to find out as much as I could about autism. I would take care of my child all day, and at night I would be obsessed with reading and researching everything I could find out about autism. I made appointments and kept up with her therapies, and life kept going.

Looking back, if I could go back to the day of my daughter’s diagnosis, I would tell myself that it’s OK to grieve privately. It’s OK to not shout out the news that your dreams you had for your child’s life are changing. It’s OK to not have a plan. Your journey is going to be bumpy, and you’re going to run on broken roads at times, but in the end you still have the beautiful, enchanted daughter you started out with. You’re still going to have wonderful moments when she shocks you at her abilities and actions. Yeah, your dreams for her are going to be different, but they will not be less.

Don’t worry so much. It’s all coming; just wait and see how wonderful it all will be.

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For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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