5 things I'm ashamed of as an autism mom

Is shame a natural feeling for all autism parents?

I hope other parents of children with autism can relate! I hate to think I'm the only one who feels these things.

1. I sometimes do my son's homework.

 There are days that I can't deal with the stress of making my son do his homework. The anger, the whining! And that's just me!

No, really, after a long workday, checking in on my elderly father and  then coming home to do housework and cook supper, I sometimes have no patience left.

I know it is setting a bad example and I'm encouraging the bad behavior, but at the time I'm too exhausted to care.

2. I often feel like giving up.

Parenting is hard work. I thought raising two daughters was work, but nothing compares to raising a special needs child. The appointments, the planning of social outings, school work, the simple daily routines - it can be overwhelming. 

The mornings are when my son is at his worst - hyperactive and mouthy - I dread them. Will he ever outgrow this?

3. I dread what the future holds for my son.

My son is high functioning so there is hope for his future - right? But what will he do or become when he has so few social skills or interests?

I had high hopes for my girls, now adults and neurotypical. I  can't see a very bright future for my boy. No medical degree, no advanced degrees at all. I don't believe even a community college will be an option. I'm a laborer and I wanted better for my kids.

4. I get way too angry way too often.

When I walk through my door and I'm greeted by a big mess - every cupboard open, toys and food scattered everywhere, and just general mayhem -  I start the nagging. Then comes the annoyance, followed by yelling.

I know the yelling makes things worse, but at times that is the only thing that gets my son's attention.

My son now looks closely at my face when he sees me. Is angry, psycho mom here or normal calm mom? Alas, much of his behavior is reflective of mine.

5.  I am too sensitive to other people's opinions.

I am way less sensitive than I used to be, but make a smart comment about how too many kids don't get the discipline - insert whipping - that they deserve, and I'll see red. When his teacher told me my son would do better if he stopped daydreaming, I had to bite my tongue.

 I  do no longer feel the need to say, "But he's autistic!" every time someone questions his behavior.

I  do love my son!

Lest you think I don't love my son, be assured I do! I love him with all my heart and soul, with a fierceness and protectiveness only a parent can know.

For all the problems we face together, the pride I feel when looking at how far my son has come makes  me glad to be his mom. Even if I'm not perfect myself.

Someday the pieces will fit... Autism awareness 4 Inch Round Button by MyFireWithin
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Is my son an autism savant?

According to Autism.com: The estimated prevalence of savant abilities in autism is 10%.
In the neurotypical community, savant ability is seen in less than 1% of the population.

Since my son picked up his first crayon, I have been amazed by his talent. He doesn't draw just a ship, he draws the Titanic, complete with smokestacks, rails, wires,  lifeboats, etc. He attention to detail is amazing.

My son drew this at age six

Several local businesses have his artwork displayed and he is known in his school as a "great artist."

Last summer we attended a family function at which there was an old piano. Liam went to the keyboard and started picking out the theme music to "Luigi's Mansion." I was shocked!

Wondering if he had an unexplored talent, I bought him a keyboard for Christmas. Ten hours later he was playing this video:

My son is way behind his classmates in reading, comprehension and speech. He has an average math ability. But for every area in which he has a deficit, another area - such as artistic ability and attention to detail is magnified. I'm sure it is because of the way his brain developed while in the womb.

My nephew, who is more socially delayed than my son, has always been a wiz with numbers and facts. He always wanted to know how deep a lake was, how long a ship was, etc. He excelled in math in school.

The National Institute has an interesting article on autism savants. It covers the history of autism savants, and goes into more detail about the savant abilities.  NIH

I'd like to hear from other parents of autistic children, Does your child display any savant abilities?

When the school calls....

The dreaded school caller id

You shaved your what?!?

After examining the peach fuzz on his  upper lip, my son, now 10, insisted he was growing a mustache. I humored him and agreed he was getting a little hairy.

A few days later I came home from work and found my son in the bathtub shaving.... his arms and legs. Using  a half bottle of my hair conditioner, he was systematically removing all the hair on his extremities!

Suppressing a laugh, I informed him that men don't usually shave their arms and legs. He looked at me quizzically and asked, "Why do men like to be fuzzy?"

How does one answer a question like that. :)

I don't want pity........

We are tired

Educating Autistic Kids Must be a Priority

  The picture is of my son, Liam. He has high-functioning autism. He attended a mainstream kindergarten class in North Carolina and failed. My son and I then moved to Indiana in search of a more supportive school system. My son attended a classroom with other autistic children and did wonderfully.

We are now living in North Dakota which has  incredibly supportive school systems. My son is in a regular classroom and has an aid who shadows him throughout the day. She reinforces positive behavior, keeps him focused, and calms him down when he get overstimulated. He is now attending all of his classes but gym.

With 1 in 88 children diagnosed with autism every year, autism has become a global epidemic. The cost of caring for autistic children in the U.S. is estimated at $137 billion a year, according to WebMD. The sooner a child is diagnosed and receives help, the better his chance to be able to function normally in society.

Federal funding for research into the cause of autism needs to be increased, and states must make education of autistic children a priority. We as a society can pay a little more now for research and prevention, or we can pay much, much more later for the lifetime support of our special-needs citizens

Autism is Not Caused by Lack of Discipline

  Yahoo! asked readers and contributors to write short personal stories on caring for an autistic child in honor of National Autism Awareness Month. Here is one perspective.

Raising a child with autism is just a bit different from raising a "typical" child: The emotions you feel are more extreme. The bad times when you deal with meltdowns are awful, but the good times when your child achieves an important milestone feel incredible.

One disheartening aspect of parenting an autistic child is the blame heaped on the "permissive" parents. My son's own father disregards the psychiatric diagnosis of autism. He, like other uninformed people, feels my son's behavior is due to "lax" parenting -- my son just needs a good butt whipping. Never mind that the worst thing you can do is hit a child who is already fearful of the world. Thankfully my son and I were able to move away, and my son is showing great improvement in his behavior.

Autism Medication and My Son: Vyvanse, Clonidine, and Risperidone

It is hard to make the choice to put your child on daily medicines. Although I often feel guilty about my choice, I can see no other alternative.
I tried the gluten free diet and removed food containing red dye from his diet. For his sleep problem, I tried melatonin. None of these natural remedies worked and I was at my wit's end.

The following medicines were the last - and more successful medicines -prescribed for my son.

My son was put on the ADHD medicine Vyvanse, another stimulant used for treating the ADHD that so often occurs with autism. The Vyvanse replaced the Concerta which caused my son to constantly clear his throat, an unwanted side effect,. I discussed this and two other medicines in a previous post: Autism Medication and My Son: Intuniv and Concerta.


My son was plagued by nightmares.

Vyvanse, I love you!

The Vyvanse works well for my son's ADHD. My son is now able to focus at school and is no longer constantly bouncing off the walls during the day.
Ironically, before my son was on a stimulant medicine, he would not leave my side. It is one thing to have a hyper child, it is another to have a hyper child who is constantly hanging and pulling on you and won't go outside to work off some of his energy.

Just like Concerta, Vyvanse had no effect on my son's rages.

An unwanted side effect is appetite suppression. At  8 years old and 46 inches tall, my son weighed 39 pounds. My son will not be hungry for most of the day but will eat in the evening when the Vyvanse wears off.

Clonodine for his sleep problems, hallelujah!

My son has had difficulty sleeping since he was about two. He did not want to go to sleep and would lie in his bed for hours.  It drove me to tears many times because  at the time I was in college and needed to do homework and be rested for my hospital clinicals. To make matters worse, he  never slept late in the morning.

My son was also plagued by nightmares. He awoke every single night screaming "mommy, mommy, mommy." He couldn't tell me what his nightmares were about, but he would go  back to sleep as long as I was near him. I started to let him sleep in my bed so I wouldn't be so exhausted in the morning.

My son and I moved to North Dakota when he was 7. My son was referred to a psychiatrist because of the sleeping and anger issues. The doctor prescribed clonidine as a sleeping aid. Clonidine's primary use is as a blood pressure medicine, but it is also prescribed for ADHD and insomnia.

The night of the first dose I was skeptical that my son would go to sleep. But within 45 minutes of taking the medicine my son said he was tired and wanted to go to bed. I was almost delirious with relief. At long last I had a few hours of quiet time  in the evenings.

Risperidone (brand name Risperdal) for anger!

I thought that my son's anger would subside once he started to get more rest, but the extra sleep didn't help at all and he still awoke at night because of nightmares.

The psychiatrist and I discussed risperidone, an antipsychotic drug. Risperidone's main use is for the treatment of schizophrenia and bipolar disorder, but it is also used to treat anger and aggression in autistic children.

The risperidone has worked very well. My son is no longer as angry and violent when he gets upset. He still has a temper, but the uncontrollable rages are gone! He also plays much better with other children and he very rarely wakes up in the middle of the night.

An unwanted side affect of risperidone is weight gain and gynemastia (man boobs). No signs of any breast growth, but my son has gone from looking like a famine victim and is at a healthy  - but still slender - weight.

My feelings about medicating my son

I used to be one of those people who felt drugs are being overprescribed to children. I was smug and thought  my parenting technique was all that was needed to raise happy, healthy children. It may have worked for my two older kids, but I got the smug kicked right out of me.

I do not like medicating my son, but I know that without the medicines, life would be awful - for both my son and me. We are both so much happier, relaxed and loving now.  I hope some day my son can stop taking these medicines, and from what I have read that may be likely.

Life is good. :)

Do You Hate Goldfish, Mom?

"Do you hate Goldfish, Mom. Do you? Do you hate them? Crush them!"  This is my son's response after I had  said "no, thank you" when he  offered me a Goldfish cracker. Now he wants to know why... If I don't want to eat one,  he thinks I must hate them.

At eight-years-old, my son is trying to figure out emotions such as love and hate. In his mind, if someone shows any negativity towards something or someone, then hate must be involved.

If I tell him to stop smacking our German shepherd, I will hear "Do you hate me, Mom? Hit me, kill me, Mom." The same thing happens when I correct  the dog: "Do you hate him, Mom? Hit him, kick him."

It exasperating to have to explain that no, I do not hate whatever, nor do I want to hurt it, kill it or throw it in the garbage. It also confounds me that he equates rejection or discipline with  anger - anger so profound that whatever is being rejected must be destroyed.

This is the most frustrating part of my son's autism right now. I wish I could peek into his brain and read his thoughts. Where does the violence come from? Why can't he understand that the world is not black and white?  Emotions do not come down to just  love or hate. There is a whole world of grays I wish he could see.

Until then I must patiently explain that no, I do not hate Goldfish. I just do not care to eat one right now.

Autism Medication and My Son: Intuniv and Concerta

Like many other children with  high-functioning autism, my son also has Attention Deficit Hyperactivity Disorder (ADHD), and requires medication.

Vyvanse Capsules
Image by Champlax CC-BY-SA-3.0

Intuniv

The summer before my son entered kindergarten, it became apparent that in order to succeed in a regular school setting, my son would need medication. In daycare he was unable to sit still and he couldn't focus on tasks unless he was doing an activity he liked such as playing with cars or blocks.

The doctor recommended that we start my son on the lowest dose of the blood pressure medicine Intuniv. In clinical trials, many autistic children  showed improvement in attentiveness. After a few weeks on the Intuniv, my son did show a little improvement in his ability to focus.

My son started kindergarten in a mainstream classroom a few months later and immediately the teacher had problems getting my son to focus. After repeated attempts by the teacher to get my son to participate in activities, he would have a meltdown and I would be summoned to school to get him. North Carolina does put much emphasis on funding its schools, and the poor teacher had no assistance from qualified special-ed teachers. She had her hands full with the other 24 children in the classroom.

Concerta

After another call to the doctor, my son's Intuniv  dose was increased, but it had little effect. Three months into the school year, the Intuniv was stopped and my son was prescribed Concerta, a stimulant used  for ADHD.  The change in my son was dramatic - he became very quiet and was able to focus and sit still for long periods of time. It did make me sad to see my son so solemn and quiet - but it was also a relief to have a break from the boy who could not sit still unless he was stimming with his toys.

Concerta side effects

Concerta did have two unwanted side effects - appetite loss and throat clearing. My son was born skinny and has stayed skinny. He would eat first thing in the morning, but after the Concerta took effect, he would not be interested in eating until the evening. He initially lost a pound or two, but by letting him eat whenever he wanted, he stabilized and lost no more weight - but he also never gained any in the year he was on Concerta.

The throat clearing started within a month of starting the Concerta. I hoped it was temporary, but it continued the entire time he was on the medication.

No help for his anger

The Concerta had no effect on his anger or meltdowns. He was always prone to self-destructive behavior such as head-banging and slapping himself, and he frequently went into rages at home over minor annoyances. Toys were thrown, stomped on and otherwise destroyed. Furniture in his room was marred and tipped over.  If he ran into a wall he would rage at the "stupid wall" that was trying to hurt him.

Although my son could now sit still at school, he ultimately failed kindergarten.

My next post will discuss Vyvanse, clonidine, and risperidone.

10 Snappy Comebacks to Silly Statements: Help for Parents of Autistic Kids

10 Snappy Comebacks to Statements Made About Autistic Children

Updated on August 19, 2016

Grin and bear it!

Some times you just have to grit your teeth and smile!

Parenting an autistic child can be extremely stressful. But a lot of people make it worse because they still don’t “get” autism and say things that will make you feel like smacking them alongside their head.

I have written a list snappy comebacks I am tempted to use in response to these people but haven’t…. yet.

Someday I may just snap and I am going to figuratively smack these people across the face with snappy comebacks to their silly statements.

1. He doesn’t LOOK autistic…

Snappy comeback #1: It's the way we dress him that hides it.

Snappy comeback #2: You don't look ignorant, but here we are...

2. If it were MY child, he wouldn’t act like that.

Snappy comeback: "I didn't realize you had a degree in child psychiatry"

3. He doesn’t act like that when he’s with me.

Snappy comeback: Wonderful! How about you take him for a week or two and see what happens?

4. Autism wasn’t around when I was a kid.

Snappy comeback: Neither were velociraptors but that doesn’t mean neither existed,

5. Autism is being over-diagnosed right now.

Snappy comeback: That’s a relief. My child’s doctors, teachers, child-care providers, and behavioral and speech therapists are probably just looking for an easy answer to a behavioral problem.

Autism and discipline

One very disheartening aspect of parenting an autistic child is the blame heaped on you by other people accusing you of being too permissive. Please, if you haven't walked in my shoes, don't judge me.

6. He just needs more structure.

Snappy comeback: Slap your forehead and say "Well, bless your heart….Why didn't I think of that."

7. What is HIS problem?

Snappy comeback: His problem is people sticking their noses into other's business.

8. If that were MY child acting like that, I would spank his butt.

Snappy comeback #1: I’ll look the person up and down and say, “I’m sure you would.”

Snappy comeback #2: I may try that since the cattle prods didn’t work.

9. My friend’s child was cured of autism by following a special diet.

Snappy comeback: And to think scientists haven’t been able to replicate this in studies. It must be a conspiracy by the pharmaceutical industry!

10. Just ignore his behavior and it will go away. Meltdowns are just a way of getting attention.

Snappy comeback: If I ignore you, will you just go away?

Okay. I probably will not say these things because I try to never hurt someone’s feelings. Sometimes people say these things because they are trying to be helpful, because they have not dealt with an autistic child, or because they are just a judgmental poophead. I will give them the benefit of the doubt - the first time.

Have wonderful day.

The humorous side of Aspergers

A must read for parent and caregivers of autistic children.

Ten Things Every Child with Autism Wishes You Knew: Updated and Expanded Edition

 Buy Now

If you have a child who is newly diagnosed as autistic, or just need a book to help family members understand your child, 10 Things Every Child With Autism Wishes You Knew.

This book not only helped me with understanding my son, it also gave me strategies for helping him.

I highly recommend it for educators and friends as well!

More examples of outrageous comments about autism

• 15 Most Unsupportive Remarks Moms of Kids With Autism Hear From Loved Ones | The Stir
  Failing to see eye-to-eye with loved ones -- especially when it comes to how you parent -- can be frustrating and upsetting. But moms with kids who ha...

About Autism: What to Do if you Think Your Child May be Autistic

If you suspect your child is autistic, you may not know what to do. I have compiled a list of what I did when I first thought my son was autistic.

add →photo

My son at age four.

Source: Author's photo

Trust your instincts

I knew something was “off” with my son when he was about 8 months old. At first, I chalked it up to his being a boy – after all, he had two older sisters and boys are different creatures than girls. Later the guilt set in: I returned to work too soon, I wasn’t being a good mom, I was being too strict or not strict enough.

But by age two and with my son having a significant language delay, I could no longer shrug it off to "bad parenting." I had to seek answers for my son and myself.

Don’t let your self doubt delay help for your child.

Speak up!

Tell the pediatrician, the nurses, local mental health providers, everyone. You want documentation of all the symptoms you are concerned with in as many places as possible. This will help when your child is eventually tested.

Keep a journal of all your concerns

Is your child not babbling or smiling yet? Write it down. Is he/she obsessive about certain objects, or does he/she react strangely to external stimuli? Write it down. Include the age of your child when this happens – you will need this information when filling out paperwork later. Memory is fallible.

Has your child been diagnosed with autism?

Seek help

The earlier the intervention, the better! Many states have early childhood intervention programs. Contact your local county health department, or ask your your child’s pediatrician for a referral. Many programs are free to low income households. If your child is school age, request testing. A diagnosis is essential to creating an IEP (individualized education plan) which will structure your child’s education to his/her needs and abilities.

Don't give up if your young child isn't correctly diagnosed. When my son was first tested at age 2, the psychiatrist said he was not autistic. He was finally diagnosed as autistic at age four by a different doctor.

Because I had documented all his behaviors and had reported all his odd behaviors to his pediatrician, the new psychiatrist had more to base her diagnosis on then simple observation and testing.

Let your child stim

Stimming is common in autistic children. Wikipedia defines stimming as: Self-stimulatory behavior, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.

Yes, some stimming behavior is distracting but It is believed that stimming is soothing to an autistic child in a loud and unstructured world. If she taps obsessively, let her tap. If he loves to line up cars or other objects, let him. Let the hands flap and the legs move!

Stimming explained

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Keep your child’s day structured

Transitions are disturbing to many autistic children. Having a set schedule helps them anticipate and accept change.

If there is going to be a change in the routine, tell your child in advance.My son is much more accepting of change if he mull it over in his head for a while.

Read, read, read!

There is no such thing as too much information. As no two children with autism are exactly the same, reading blogs, seeking out autism websites, and reading books on autism can help you relate to your child and find new strategies in parenting.

Be patient

This may be hard to do, especially during an emotional meltdown. But remember your child is not bad! Meltdowns are common and may be frequent in the younger child.

Realize that it usually results from frustration due to the inability to communicate his/her needs. Let it happen, while protecting your child and possessions. If a meltdown is too violent, wrapping the child in a blanket (do not cover the head!) can prevent harm and may actually soothe the child.

Develop a thick skin

Friends, family and strangers will judge you and your child. You will deal with those who feel your child is a brat, those who feel you are too permissive, and those who do not think your child is autistic at all. It hurts, but life goes on.

Try to educate family members, but if it doesn't work, avoid the topic. DO NOT let their ignorance influence your parenting strategies. Only YOU know what is best for your child.

Make time for yourself

Join a support group, go for a walk, just get out by yourself. Parenting an autistic child is stressful and challenging. You need time to relax and not be “on call” all the time.

There is so much more that can be said. If you have thoughts, questions, or strategies, feel free to comment below. Good luck, and enjoy your special child.

My son has always shown artistic ability.

Source: Author's photo

Advocate for autism education

My son has high-functioning autism. He attended a mainstream kindergarten class in North Carolina and failed. My son and I then moved briefly to Indiana and discovered a more supportive school system. My son attended a classroom with other autistic children and did wonderfully.

We are now living in my hometown in North Dakota which has an incredibly supportive school system. My son is in a regular classroom and has an aid who shadows him throughout the day. She reinforces positive behavior, keeps him focused, and calms him down when he get overstimulated. He is now attending all of his classes but gym.

With 1 in 88 children diagnosed with autism every year, autism has become a global epidemic. The cost of caring for autistic children in the U.S. is estimated at $137 billion a year, according to WebMD. The sooner a child is diagnosed and receives help, the better his chance to be able to function normally in society.

Federal funding for research into the cause of autism needs to be increased, and states must make education of autistic children a priority. We as a society can pay a little more now for research and prevention, or we can pay much, much more later for the lifetime support of our special-needs citizens

Venting after a Meltdown

I knew it was going to be bad when Liam got off the bus. He threw his bookbag and stomped to the house. One thing lead to another until I had to wrap him. It was like a scene from the exorcist:  screaming, cursing, crying. I don’t know what I’ll do when he gets bigger. I’m not as young and strong as I used to be. I didn’t realize how emotional this makes me. I want to run off and cry. When will this stop?