The Ramblings Of Pessimism.

It’s like there’s a time bomb always ticking in the background. The background of my thoughts, of my routine, of everything in my daily life. The closer it gets to E’s 4th birthday, the more panicked I feel. The more restricted my airways become. I don’t think I ever really really believed that he wouldn’t talk. I kept thinking, not my E, he will eventually. He’ll get that speech therapy and it’ll take off. But, here we are at almost 3.5. Still no speech. He is smart as a whip and communicates in so many different ways, but I feel like the day is winding down. I am in the 11th hour. That might be a slightly dramatic description. There are kids that talk after the 4 year mark, and I do still have time. But in this moment of my fears, it feels exactly the way described. I think it goes hand in hand with the stages of grief. You swing from acceptance, to denial, to bargaining, to depression and back around again.

It’s the not knowing that really kills you. It’s also the seesaw of optimism mixed with the “well, its a spectrum” lines you get from the doctors. They never will tell you just how severe your kid actually is. I spend my nights googling, searching other autism forums, just trying to find out what I am up against. What group of autism is my son actually in? I hate this spectrum stuff. The spectrum is too broad, and it slights everyone. You are given a blanket diagnosis, with over a million different outcomes, and you just have to wait to see where your child lies. If you ask, they give you vague, nonsensical answers about it, “Well everyone is just so different on the spectrum. Anything can happen.” No definite answers. Tell me then what is the purpose of this “spectrum diagnosis? What good does it do me if I still have no idea the true prognosis for my son? And why is it an unspoken taboo to ask just where your child lies in the vastness of this spectrum diagnosis.

It’s as if you were to take your kid to the doctor because something is clearly not right. He is coughing, he has random fevers, he randomly throws up. You know something is wrong but you don’t exactly know what. You get to the doctors office and they confirm your worries.

“Well ma’am, you did the right thing by bringing him in. There is definitely something wrong with him.”

“What is it? What’s wrong with him?”

“It’s Childhood Illness.”

“Okay. What is Childhood Illness? Will it get better?”

“We are not sure what will happen with him and his Childhood Illness long term, or even short term. He could always have these symptoms, he could get rid of them, or he could end up having just half of them long term. It’s hard to say.”

“What should I do to help him?”

“There are 100 different things you can try. Some might work, some might not, and… maybe, its a possibility, that all of them will not do a thing.”

“Okay… well, is there one that would work better for his type of Childhood Illness? Could we get more specific?”

“Don’t get caught up in the labels, just accept your son and his Childhood Illness.”

“Can I talk to anyone else that has a child with Childhood Illness?”

“Oh definitely, there are tons of support groups. There are so many moms that have kids with this. That mom over there in the waiting room,” the doctor says pointing. “Her son has it too.”

“It kind of looks like her son actually has completely different symptoms than my child.”

“It’s still Childhood Illness.”

“But there is literally nothing the same at all between our two kids.”

“Well, that’s the way Childhood Illness goes. Read this book about it.”

“But, this book is about children who sneeze not cough and have chronic bloody noses. My son doesn’t have any of that.”

“Like, I said, it’s a spectrum. Just read it. I’ll see you and your son in six months to discuss how trying as many of those 100 things you can in that period goes. Try not to go bankrupt on the way.”

Outside of autism and other disabilities is this considered an effective plan of action? I feel like the doctors around me spend so much time trying to instill me with hope and optimism that they forget to fill me in on the realities. I know that nobody can answer the questions that I want to know about E. But just give me a ballpark. There is a big difference in my life long-term having a non-verbal moderately severe child with autism, and having a verbal child with moderate autism. I just want the facts. I am not alone in this. In the autism forums that I frequent, the pages are full of, “Tell me where my child is on the spectrum. Does your child, who is doing this and that, talk? What should I expect?”

Nothing from a medical provider can change E. They can’t change the future. But could they help me better prepare for it? In a situation where hope is a dangerous thing, what’s the harm in just giving the hard facts? If my hopes are low, I can only go up if he exceeds those expectations.

 

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Hoping For What?

As humans, I think we are designed to look for the light at the end of the tunnel. We gear up all the energy that we have, get a running start, and do everything we can to get to that light. But what happens when that light is not as visible? What happens when there doesn’t seem to be an end in sight?

I’ve been having meeting after meeting lately while we prepare to transition E out of Early Intervention and into the next phase of services. Part of this is a Future Planning Meeting, where we talk about what my hopes and goals are for E. I remember the meeting last year. I was optimistic. I had heard so many success stories about kids who after a year of therapy, their progress really took off. The speech kicked into place and things just got easier. When E’s third birthday rolled around, I remembered that meeting and I felt a loss all over again. A loss for all the hopes that I had for him in the past year. My original hopes were adjusted when he was diagnosed, and I had acquired new hopes. E actually has progressed. He has made a lot of changes. But as any parent of a special needs child knows, with progress, comes new difficulties. E becomes more aware of his environment. E becomes more anxious and sensitive to those things around him. E becomes more fearful. E becomes destructive as he learns to explore his environment.

As he has learned to say certain words and babble I find myself so excited for him. So excited that he is learning how to form sounds, and say words that are functional. E hears a door open somewhere in the world; on the tv, upstairs, in the neighbors house (That E Boy has supersonic hearing when he wants to). He says “door opennnn”…. I get so excited that he is aware enough to notice that the door is open and to say that phrase. I start to think, “Wow he is going to talk. I am so happy for him! Things are going to get easier.” But then that excitement fades as it stays the same. The same standstill. Last June, he imitated his first word, I was elated. A year later he does not imitate that word anymore. He does not imitate more words. He imitates a different word. I am ready for the progress, but it seems to just be parallel progress.

Preparing for my next Future Planning Meeting, I thought, “What are my hopes”? The meeting came around, and they asked the questions. “What is E doing differently this year? What has he overcome? What are his strengths”, and lastly, “What are your hopes for him?” Adjusting what I want, I told them I don’t have specific goals. My hope? For him to be happy.

Having a child with autism, it often seems suffocating. I get to a breaking point where it seems I can not stretch anymore, but then against all odds, I do.

Today, I heard a crash from the basement. I went down to find E shattering an heirloom. Picking it up again and again. Smashing it into thousands of pieces. The one thing I had that had been passed onto me from that grandparent. My heart broke. I was devastated. I can tolerate him pouring fruit loops all over the floor. I can tolerate him ripping a key off of my keyboard. I can fix those things. What I can’t handle? Him destroying something so irreplaceable and special to me.

Hope can be dangerous when you are dealing with autism. Every child is so different and I have no idea what to hope for. I hope that I can handle the next year. I hope that I can be a good parent. I don’t hope for things to get easier, and I don’t hope for progress. I want it. But if I hope for it, I don’t think I can handle the pain from that being crushed. Again and again.

Will He Talk?

Will my child ever talk? It’s a question that I’ve obsessed over for the last year. At the beginning, I thought about it compulsively. I would ask anybody and everybody. I wanted somebody to tell me that yes, he would talk.

We talk a lot in his appointments and therapies about progress. About E’s individual progress. That his timetables are different. That I can’t compare him to others at his age, but instead compare him to himself several months ago. Example. Several months ago, he was only babbling in vowel sounds, now he has been able to add consonants to his babbles. At the beginning, I tried to be patient with his progress. With his progress in OT I was patient, but with speech.. not so much. I always wanted to know if certain progressions meant that he would start talking in x amount of time. ‘If he is making those movements with his tongue, did that mean that he would for sure be talking by 3?’ I had to know when he would talk.

Several months back, I had just finished touring an Autism Center for E. I asked my question to the director. ‘Will he talk? Have you had children like E come through who end up with functional speech by Kindergarten?’ Her answer was the same as always. ‘You know autism is a spectrum. You know every child is different.’ Frustrated by the lack of knowing once again, I started thinking about why E talking was so important to me. What did it mean to me? What is my job as a mother? To make sure my child is safe, loved, and happy. So what if he doesn’t talk? What does that mean? Does that mean he can’t be happy? Does that mean he can’t be loved? No. I realized that me wanting E to talk, was me hanging on to the last shred of hope and normalcy for E. If he talked, somehow his autism wasn’t as serious. He could be one of those miracle stories that you hear about. Who seemingly grow up with no traces of autism left. In that moment, E’s autism finally sank it. With it came complete love and acceptance for my boy and what he was capable of. As long he was happy, that’s all I realized I really cared about. The fear over that question finally melted away. Whether or not he talked stopped mattering as much.

Do I still want him to talk? Yes, but now the reason behind it is different. I want him to talk for what it will do for him. I want him to be able to express himself. I want him to be less frustrated.

There are still days I ask that question and still days I get frustrated. But, now they are fewer and far between.

Coping.

Sometimes it totally catches me off guard that E has autism. I look at him asleep in his room and I see the pictures of him on the wall as an infant and it just hits me. The reality of it all. That my baby E has autism. It’s like a punch to the gut and I feel like I have had the wind knocked out of me. Especially days like today where he is really hard and the autism is more obvious. I look at that those old photos and with them are my expectations of what I thought he would be like and what I thought my life would be like. I expected him to be a typical little boy. He would go through the same stages and milestones as A. I see those pictures and it’s like they were another lifetime. It’s almost as if that boy still exists out there, and that mom still exists out there. And then I am here. People try to be optimistic with me. They say, he will be fine, he will do great. I hope for those things too, but what they don’t understand is that I am still dealing with the loss of what I thought he would be. I am still grieving my old life. To me in this moment, Autism is everything. I am grateful for what I have. I am grateful for the resources I have, but sometimes I am still just sad. And defeated. Sometimes it takes every ounce of energy to run after him again. Or to ignore the intense embarrassment I feel when he is shrieking and I am taking him out of the restaurant while everyone watches. Or feeling anxious as some stranger at a store comes over and tries to play with him and tries to be interactive. I pray that he just looks at them once so the moment will be over. Sometimes it feels like I have been dealt more than I can handle. For those days, there is writing and David Sedaris.

FAQ about Autism

The kids and I were in the play place of a fast food restaurant the other day. I was sitting down while A and E played. There was another adult sitting in the play place as well and she was watching E. “How old is he?” she finally asked me. This is the seemingly non-complicated question that I get stumped on. The reason being, they are usually asking how old he is because they are confused by his behavior and his size. They usually think he is big for his age because he is acting younger than he looks. “Two and a half,” is what I replied. This is the point where I wonder if I should insert, “He has autism.” It’s not anybody’s business and I am under no pressure to share this information with strangers. But… they are usually asking because they notice something is different about his behavior. I don’t want pity so in the past I have often hesitated to bring it up. Lately though, I have been trying to bring it up more regularly. The reason for this is, I want to bring normalcy to autism. I don’t want it to be a taboo subject. I want the person to be aware. He is doing those things because he has autism and that’s okay. “He has autism” I finally tell the lady. “Oh really?” she replies. “That’s interesting because he looks so happy.” With this response I am immediately grateful that I chose to bring it up with her. I explain to her a little more about autism. I explain that children with autism are happy and are able to convey it. Maybe not in the traditional way that we expect, but they still are.
When I tell people that E has autism, I usually get several follow-up questions. I welcome these. I have a tough skin and there is not much you can say, short of directly insulting my son, on the subject of autism that will offend me. I welcome being able to educate people and help people learn more on the subject. When my husband told his boss about E’s situation, his boss replied that he had never met someone with autism and to be honest he didn’t really know what it was. I was shocked by this. I just figured everyone knew what autism was.

I have gathered a list of the answers to my five most frequently asked questions. My answers are not everyones answers. There is a famous saying people like to quote in the autism world. “If you’ve met one person with autism, you’ve met one person with autism” I am sharing the answers gained through my experiences with my son with autism.
Without further hesitation…

1. How did you know E had autism?
I get asked this all the time. I get asked this the most when the asker has concerns about their own child’s development. I think the hidden question is, should I have concerns about my child?
I was lucky enough to be around autism quite a bit with a prior job. I knew the warning signs. I also went to school for Early Childhood Education. I realized that E wasn’t as interactive as A was at his age. I realized that he could go days without acknowledging me. I noticed he wanted to communicate so bad but he didn’t seem to be able to do it. There are a lot of these symptoms that on their own are nothing to worry about. E had them all. Poor eye contact, speech regression, behavioral issues. My advice on this is, you have your mother or father sixth sense. If you feel there is something off, what’s the harm in getting your child tested or an opinion from a medical professional? We had to go through three screening processes which were quite time-consuming. Each one over an hour before we were even referred to the developmental pediatrician. They don’t diagnose autism easily. They are very thorough. Whatever the problem might be, through testing, they can identify your child’s delay and come up with a individualized plan to address it.

2. Have you tried [insert latest fad, diet, or behavior]?
When E was first diagnosed, I didn’t sleep. I spent every possible moment researching therapies and reading book after book. I wanted to do everything possible to help my son. There comes a time when you realize what you can realistically do out of all the information and services out there and what will work for your child. You can’t do every single thing and it’s not good for the child to be in therapy every waking moment either. It’s also not good for the parent to be only eating and breathing autism. I have tried certain things and will continue to try new things, but one step at a time. I guess, what I am trying to get at is, every single fad, diet, or behavior, I am very aware of. I probably have earned a PhD with all of the research I have done on autism. I know that people want to help. It’s human nature to want to fix things. Trust that we know what we are doing and we have one hundred percent heard of what you are suggesting. Even if you know somebody who had success with such behavior or therapy, every child is so different and what worked for them may not work for my child. Replacement questions that I personally love are, “How are you handling all of this? How are you doing? What’s keeping you awake at night worrying?” Autism moms want to sound off. I am not offended when people mention the previously mentioned things. I know they are being kind and it’s coming from a good place. It does however get tiresome explaining what I am doing with my child and if I have tried it and if I haven’t, why not.

3. Was it the vaccinations?
I don’t believe that vaccines cause autism. This is a hot topic so I will not elaborate much more. Two things. E did not have good eye contact or interaction at all as an infant. It did happen, but it was few and far between. He always seemed to just tolerate me. I thought I wasn’t being a good enough parent or that I was not bonding with him properly. These signs were noticeable from a young age, I just didn’t know they were connected to autism yet. Second thing. https://www.amazon.com/Autistic-Brain-Helping-Different-Succeed/dp/0544227735/ref=mt_paperback?_encoding=UTF8&me= This book talks in depth about what the autistic brain looks like.  It’s a very interesting read and I highly recommend it. The information in the book has strengthened my belief even more that autism is something you are born with.

4. This is not a question, but an observation I get often. “He doesn’t look like he has autism” or “It doesn’t look that bad”. This one really gets to me sometimes. Autism is not obvious at all times. If E is just playing at a park, you probably are not going to notice. Come to my house when I try to transition him from play time to another activity and the autism alarms will be going off at full decibel. A child with autism is not always hand flapping/stimming. To say it doesn’t look that bad minimizes things. Until you have walked in my shoes, you can’t say it’s not that bad. This goes for everyone. We don’t know what other people are going through. Supportive words are always the best whether or not you see the difficulty in that moment.

5. I thought kids with autism didn’t smile or like to be touched. Why is he so loving and touchy with you?
E is sensory seeking. Other children with autism may be sensory avoiding or some are like E and are seeking sensory stimulation. E does not seem to feel things as much as a typical child. He falls down and bleeds but doesn’t cry. I don’t realize he has an ear infection often for almost a month because he does not show that he is in pain. If I put a block down his shirt, he can’t feel it most of the time. He craves sensory input. Most often times from me or A. Children who are sensory avoiding may be overwhelmed by loud noises. They tend to hear and feel things even more than the typical child. They easily get overwhelmed by touch because they are feeling it so much more that it can hurt. E does not feel it enough. He likes to crash into things. He loves to swing. He loves to squish into me as hard as he can. He likes to flip upside down. This feels good. When he is having a meltdown, I put him in a tight hold and this calms him down quickly about fifty percent of the time.
E didn’t always smile. It used to be very hard to get a smile out of him. He is able to show his emotion a lot better than he used to. We are grateful for this. E may not react to the same kind of stimuli as W will with a smile. If I smile at E, he will return it maybe one out of four times. There are certain things that make E smile almost without a doubt. These are motion games. A will take E’s hand and they spin around and around and around and that makes him smile. E feels the most relaxed and happy when his sensory needs are being met. We get the most speech and smiles out of him when he is in his swing. His sensory needs being met make him feel safe and relaxed and because of this he is able to relax a bit and smile.

5. What is the hardest part?
The hardest part right now is feeling like I have an eternal one-year-old. E cannot walk on his own or he will run away. When I hold his hand in a parking lot he drops all his weight to the ground and refuses to walk. When I hold him he is constantly trying to get free. Pulling my hair, throwing my sunglasses, pulling at my face, whatever he can do to get me to let him down. He still puts things in his mouth, he runs straight to the street or the pond when we go outside to play. He resists getting into the car seat. Every time I put him in I have to man handle him. He still gets up in the middle of the night several times. I feel like when you have a baby, you think this is so hard, but it’s okay because you know they will get older and outgrow it. You mentally are prepared to handle it for x amount of time. With E, I don’t know how long this will last. It’s exhausting. I live in fear of him getting lost or hurt. He flails in tantrums and hurts himself. Self-harm is a problem with him and him harming me when he is angry. I feel tired all the time. I reassess my situation every few months and decide what help I need to add on. I am lucky to live in a state that has such amazing services that we can afford to add on help in the home. As hard as all that is, the smiles and the love and his sweet personality make it all worth it.

Challenges are not unique to me or to autism. Before I had E, I often felt at my breaking point with whatever life was handing me. A having tantrums, hard pregnancy, husband working late. Life is hard no matter what you are handed, and you adjust accordingly.  Viktor E. Frankl describes this better than I can in his book “Man’s Search For Meaning”

“To draw an analogy: a man’s suffering is similar to the behavior of a gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.”

And with that I end. Please comment any questions you may have about autism or about your current challenges in your lives.

 

E’s Autism Story

E was diagnosed with Autism back in April. It was nice to finally have answers. There were a lot of random behaviors that we were concerned about for awhile. The tricky thing about Autism is that there is not a physical test that can be done such as blood work. You have to rely on the expertise of the doctor that they they know what they are talking about, or the efficiency of the test that they administer, that it is a proper diagnosis. Because of this, you get a lot of people that doubt your child’s diagnosis.
We were confidant with it. We saw 2 professionals leading up to even being referred to the developmental pediatrician that we saw. The developmental pediatrician that we saw is a leader in the field, and has been working with Autistic children for 40 years.
Still, a lot of people were surprised hearing E had Autism. I think people tend to believe it is often over diagnosed. If the child isn’t displaying the stereotypical autism symptoms that they know about then they say, “Oh he doesn’t seem like he is autistic” or “you have it pretty easy with him” These comments can be hurtful, but I am learning to brush them off. E has good days and bad days. Some days, to the outsider, you might not be able to tell he has Autism but that doesn’t mean it’s not there and that doesn’t mean it is not difficult for me. I understand that people do have it harder than me, but that doesn’t take away my difficulty.
I know these comments are not ill-intentioned. I think Autism is often misrepresented. People think: Hand flapping, echolalia, tantrums, no smiling, no eye contact ever, and savant.
I thought it might be helpful to talk about autism a bit. Talk about our version of Autism and how E’s manifests itself.

What is Autism?
“Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. We now know that there is not one autism but many types, caused by different combinations of genetic and environmental influences.
The term “spectrum” reflects the wide variation in challenges and strengths possessed by each person with autism.”**

As mentioned above from Autism Speaks, the spectrum is a “wide variation” so something that one child with Autism exhibits is not the same as another child with Autism.
From the time that E was born, I had struggles getting him to connect with me. There was a period of about 6 months where he was very happy and he liked it when I would throw him into the air and I could get him to respond to me. It was however a lot more work to get him to do that then it was with A when she was an infant. During that 6 month period he was also good with other people. He still preferred me, but I could leave him with a babysitter and he didn’t mind. Around 12 months old he started to get more attached to me, and it started to get harder to draw his attention. He would sometimes go days without responding to me. He did make eye contact sometimes, but we had to work hard for it. Even when we did get it, he would be looking in my direction, but not into my eyes. I could walk into a room and he would continue playing with whatever he was engaged in and not respond to me at all. My husband Eric would get home from work and E would crawl right on past him.
He didn’t seem to mind if I touched him or if Eric touched him or if A touched him. Because of this, my mind never went to Autism. I didn’t believe he had sensory issues. What I was looking for however was Sensory Overload, when what my son really had was Sensory Seeking Behaviors. The reason he loved to be thrown up into the air was because he craved the movement. He stuffed everything in his mouth at once when he was eating because he loved the feel of it. He would come up and squeeze me tight because he was seeking the pressure. The things that I often mistook for affection were actually him trying to seek movement. I don’t doubt that my son loves me, but those were not the ways he was expressing it.
I had the sense that my E was behind in some areas, but I always figured he would catch up. He was a late crawler, he was a late walker, he was clumsy. He didn’t engage in normal play. He acted always much younger than he was.
It wasn’t until he was consistently around peers his age that I realized just how different E was. I was fine with him being different, but I started putting everything together and thought maybe he had Autism.
We were about to move across the country, so I decided to keep an eye on it. I did and in that time it started to escalade more.
When we finally did get the Autism Diagnosis, I was already in. I knew that whether or not it was Autism, my son had some severe delays. E is not low functioning, but he is not high functioning either. He has some big challenges he will need to overcome.

I share this not because I am so angry about the comments that people make. I wouldn’t know what to say in their place either. But I share this because the more we hear people’s stories the more we learn about the many variations of the spectrum.

 

**https://www.autismspeaks.org/what-autism

Road To Diagnosis.

Our little E was recently diagnosed with Autism. I can’t say it was a total surprise. We have had our concerns and have been keeping an eye on certain areas of his development for the past few months. For a long time his symptoms were masked by his constant stream of ear infections and his pain from food allergies. As we were able to get the health problems under control, the symptoms remained. Many of them got worse. Some things that were age appropriate at one time intensified instead of being grown out of.

We had 3 main areas of concern. 1. Speech 2. Tantrums 3. Lack of engagement. It’s hard this young to ascertain whether or not these are symptoms of a strong willed child, being slightly delayed, and/ or personality. So we were quite back and forth for awhile on whether these were things to truly worry about or not.

I had E assessed in Utah before we moved to Ohio for his speech. During the assessment they mentioned that they were actually more concerned about his behavior than his speech. Until then, I had never thought his tantrums were anything to be worried about. I just thought that he had a temper.

I continued to keep an eye on him. During this time, he started to regress in speech and in his social skills. He stopped babbling. And his tantrums became more frequent with more self harm involved.

As a young baby, I was never able to get him to engage in back and forth games or even back and forth facial expressions. He would laugh when we would throw him in the air or make funny noises at him but even that came late. (He didn’t smile or laugh until around 6 months.) If it was something that required a back and forth exchange, I could never get him to engage. These were things that I wrote off to his personality.

It took 2 long assessments before we were even referred to the developmental pediatrician. He exhibited enough red flags in the first 2 assessments that we were referred. The original pediatrician that we wanted to see was booked until September. After calling around, we finally found a great pediatrician in Michigan and made an appointment. He just happened to have a cancellation and we were able to get in. As prepared as I was for the diagnosis, it was still jolt to the system to actually hear the words.

We’re very optimistic and very grateful that we were able to catch it so young. We are starting intensive therapies with him. It will be very time consuming, but we’re willing to do anything and everything to help E.