Archive for April, 2015

During the month of April, it is easy to find examples of the Autism Awareness campaign. Everything from the blue lights, wearing blue on April 2nd, the kickoff of the Autism fund raising runs, and the seemingly endless social media posts about the high rate of diagnosis across the nation. This is also a season that I have mixed emotions about. I love the fact that people strive to educate others about autism. I often wish that those who have no practical experience with autism would stay out of it though. Often, they cite information that is not accurate or can be misleading. Let’s face it. It is really easy to hit the “share” button on Facebook and other social media. There is another side to this that is rarely addressed however.

First, let me tell you a bit about my son’s autism. He has what is known as Infantile Autism. It is a neurological disorder that he was born with. He didn’t get it from vaccines or other means. He was simply born this way. He is 7 years old, but developmentally is a 2 year old. He has never been diagnosed with mental retardation. He simply is severely delayed in his development due to the low functioning nature of his autism. He is non-verbal, but does vocalize on a daily basis. He makes sounds similar to what a young baby does just prior to learning to speak words. On very rare occasions, he will speak a word. At those times, he is simply repeating a word and not using it with intent. Just like when a baby continually says “Da-Da” but is not actually calling for their Daddy. Pookie doesn’t run, but will walk quickly instead. He has only within the last year been able to feed himself, with mixed results, and still needs assistance in doing so. He cannot drink from a straw or cup, but has to use a sports bottle to drink from due to both his developmental delays and a sensory issue he is working to overcome. He is beginning to use sign language, but most signs are approximated since he cannot physically make the actual signs due to fine motor delays. Just recently, he began showing an ability to dress himself with minimal assistance. We still need to direct his actions in dressing and assist by making sure he is not putting things on backwards or trying to put both feet in the same pant leg. He cannot work clothes fasteners, everything has to be pull on shirts and elastic waist pants. Socks need maximum assistance, as do his orthodic braces and shoes. He is unable to bath himself or do any of his own grooming. We are still trying to toilet train him, which is difficult due to his lack of understanding of the signs the body gives of when he needs to go. Overall, he is truly like a 2 year old in a 7 year old body.

When the organizations, such as Autism Speaks, have their big autism awareness campaigns each April, I roll my eyes at most of what is said. Prior to the new DMS-V being published, there were more clear definitions of what autism was. Yes, it was referred to as a spectrum, but people were able to distinguish between the various diagnosis that fell into the autism spectrum. Now, those lines are blurred. Autism Spectrum Disorder is now a blanket diagnosis that covers a wide range of issues. It is like saying someone has cancer. Yes, all forms of cancer have common characteristics, but the way that you treat breast cancer is different than how you would treat leukemia. It is the same with autism. Not all treatments are alike. What works for some, won’t work on another. Some kids on the spectrum function in school without needing an aid working with them, while others cannot function in school without a teacher’s aid working along side of them. Many on the spectrum are successfully mainstreamed into a classroom with kids who are not on the spectrum, while others will never be able to be mainstreamed due to the severity of their disorder. This brings me back to organizations like Autism Speaks. One of the main focuses of this organization is to do research with the pharmaceutical companies to find a drug treatment that can help “cure” autism or lessen the issues from the characteristics of autism. The most common issues that are treated with drugs are ability to focus and behavioral issues. Then, of course, you have the crusade to find a drug treatment to cure autism.

Autism is a neurological disorder, not a disease. It is simply the way that the brain is wired, for lack of a better way to explain it. There is no drug or treatment that can rewire a brain. My son is unable to use a verbal communication, not because he doesn’t know the words to use, but because the connection in the brain between knowing the words and ability to use them is not there. I remember one speech therapy session when he was suddenly vocal and calling his therapist by name. He used her name with intent. The following week and through the months since then, he has never used the vocals again. For that brief moment in time, the connection in his brain was working. Then, the connection was lost and has never returned. There is no drug or medical treatment that can force that connection to be made or keep it functioning. Yes, it has been proven that drugs can assist with the behavioral aspects of autism spectrum in many cases. The idea of curing autism through medical treatment is what I take issue with. As I already said, autism is a neurological disorder, not a disease.

Another aspect of the autism awareness campaign that I take exception with is that it is fast becoming a “feel good” fluff to many people. They pat themselves on the back for sharing a post on Facebook, retweeting a post on Twitter, or some other social media format. They feel good that they have made a difference by doing so. Good for them. Now, what are they doing the rest of the year? Talk is cheap. It can also be meaningless.

For the families who are in the trenches, dealing with a family member with autism on a daily basis, what benefit has that blue light or social media post been to them? Maybe we should pat you on the head and say “Good Boy. That effort you took has had such a positive affect on our life.” <please insert rolling eyes here> Truth is, I am glad that it gives you a sense of the “feel goods” to make the effort to share the news that autism is out there. But if you want to really have an impact, here are some ideas.

Be a friend. Kids on the spectrum are often bullied in school or are ignored. Being their friend can have a he impact on them. A common trait of autism is that the person is socially awkward, A friend an help to bridge that area but in helping them to become more comfortable in social settings and in their own sense of well-being. Imagine if you knew that you were different and others mocked you or ignored you for it. Now imagine if you had a friend during that time. Wouldn’t you life be improved by having that friend? A friend doesn’t have to be a protector from bullies or a trainer in how to be social, just being a friend who can look past the autism traits and see the person within is a true gift. Isn’t it a gift to us all when we have a friend who enjoys being with us in spite of any personality quirks we may have? The siblings of a special needs child can also face challenges where having friends are concerned. Imagine being the sibling of a child who has a lot of social quirks. As mean spirited as people can be a t times, it is a sad truth that the siblings are also targeted by bullies. It is not easy to be the sibling of a special needs child. Our own daughter, who is a couple years older than our son, often takes on the “Little Momma” role with him. Because of his disabilities, she takes on the role of protector and helper, watching out for him if we are not in the room. We have literally had to seek out opportunities for her to simply be with peers without him around to insure that she has her time with peers and to simply be herself. She takes it very personally when someone says something mean spirited about her brother. The bully attitude hurts her, even if not directed at her.

Be a friend to the parents. As a parent of a child with autism, I can tell you that a friend can be a God-send. As a friend, you don’t have to have all the answers, but just be willing to listen when the parent needs someone to talk to. Don’t be afraid to pick up the phone just to say “Hello” or drop a card or note in the mail to them. When you are the parent of a special needs child, you often feel alone. Your life is focused upon the necessities around our child, therapy and doctor appointments, schooling, and in-home therapies on top of all the other typical things like tending to your home and family, that you really don’t have a lot of life outside of that. To have a friend who isn’t afraid to call can make a difference in a profound way. Sadly, it is often that the friend has to take the first step and call. We have often been tuned out by others, so we often choose to “not be a bother” to others and stick to ourselves.

Consider giving the parents time to themselves by babysitting. Let the parents have a date night to just reconnect as a couple. The divorce rate in marriages where a special needs child is a part of the family is really high. The parents are so busy taking care of the family that they forget to take time as a couple.

Don’t show favoritism with children. It is so easy when the child with autism is nonverbal for people to talk around them or focus on the child who does not have autism. Just because the child has special needs does not mean that they are ignorant of what goes on around them. A child who cannot speak can still see when you ignore them while giving all you attention to their siblings. It hurts them and is cruel. By nature, many with autism are solitary. We, as parents, struggle to bring our child out into the world around them. Don’t make our job harder by treating our child in a way that isolates them further from those around them. Though developmentally delayed and nonverbal, our son still feels the pain of rejection when it happens. Especially when it comes from someone he cares about. After such an experience, I have often had him curl up in my lap and be literally sobbing in grief over the rejection. By the same token, don’t ignore the siblings of a special needs child. Young children can feel neglected due to all the focus on the special needs child. They may not understand why their sibling gets to go to therapies that look like fun to them, yet they don’t. These siblings needs to feel special in their own right as well.

Don’t be patronizing. While I am a strong believer in the power of prayer, I honestly cringe inside when someone tells me that they are praying for me. Are they really? Or do people say that just to make themselves and you feel good? Don’t say that you are praying for me if you don’t mean it. Try to remember that when you pray to the Lord for the me to continue to find strength to deal with the challenges that autism bring daily in to the home & family, that one answer in giving me that strength might be as simple as you picking up our phone to call me. It is easy to pray about someone. It is harder to remember that we are to be the hands and feet of the Lord, doing what we can to help ease the way.

Don’t simply share or retweet, learn for yourself what autism is all about. Educate yourself. It doesn’t matter if you have a child with autism in your family or not. Learn for yourself what the truth and reality is. There are many things shared on social media that are based upon false information. Don’t become a part of the problem by sharing that information.

If you are ever tempted to share your opinions on how I could do a better job as a parent in raising and getting treatments for my child, put your hand over your mouth and keep it shut. Unless I am asking for your opinion, I don’t need to hear it from you. Some of the most cutting and cruel things that I have ever heard have come in the form of unsolicited advice from strangers. I have had a total stranger come up to me in a store and tell me that I should have my son “fixed” by a doctor so he won’t be able to breed more damaged kids when he is older. Yes, people do go there and get that ridiculous.

Don’t remind me that children with autism are all geniuses. That is not fact and can be unwittingly hurtful to the parent. Only a small percentage of child with autism are in the genius category. Yes, many are very smart or have a talent in one area or another. Remember though that for some families, the child with autism can also be challenged with severe mental disabilities as well.

Don’t call my son, Rainman. If you really knew the story about the person the movie was written about, you would know that he had a brain injury and was not autistic.

Get to know the parents of a child with autism. I am more than the Momma of a child with autism. I am a wife and mother of 5 children. I am a grandma. I have hopes and dreams that have nothing to do with autism. I have hobbies and interests just like women who don’t have a special needs child. Autism may be a part of my life, but it isn’t the whole of my life.

There is so much more that people can do throughout the year to help families with the challenges of autism. These are only but a few to get you thinking. The best thing that you can do to help if you do not know of a family with autism challenges is to search out in your local area for organizations that directly help families facing autism. Are there any organizations which help train service dogs for those with autism? Typically, a trained service dog can cost between $15,000 to $24,000, depending on how much of the cost the family has to pay. Find an organization that helps families afford a service dog and donate to them. Offer you time to help with a fund-raising event for a family trying to get a service dog.

Don’t be afraid to bring a meal to a family, especially if there is illness in the family. You don’t even have to cook the meal. It could be a s simple as going to a place, such as a pizza parlor, prepaying and arranging for pizza to be delivered to the home.

Offer to help run an errand while you are running your own errands. Picking up a few groceries and dropping them off can lift some of the burden very easily.

If you are part of (or your own children are taking part in) a youth group or organization such as scouts or 4-H, ask if you can take the siblings of the special needs child with you. Often, parents of special needs children do not have the ability to take there other children to activities such as the youth organizations. It can simply be an issue of transportation due to the needs of the child with autism. By offering to give a ride to the siblings as you go with your own children, this opens up a door that may well have been closed before.

Whatever you can do is a blessings. One lady at a church we attend when we are able to, has been sending us a card when we are unable to attend. That little card and note means the world to me. It allows us to feel connected to the church in spite of not being able to attend. The church is 90 miles from our home and often times, we are unable to go simply because we don’t have the money to cover the fuel expense. To get that card in the mail, we know that we are not forgotten. That we matter enough to them that they took the time to write the note and send it. It is a balm to the soul.

You don’t have to make grand gestures to be a blessing to a family facing autism or any other special needs challenges. You just have to be authentic. Do something from the heart. More often than not, just a gift of your time is all that it takes to bless someone.

In this month of autism awareness, challenge yourself to do something that really matters. Step outside of the comfort zone and give of yourself to a family you know. Don’t simply share random stuff about autism on social media. Choose to be someone who can ease a little of the stress. Find one thing that you can do, with honest compassion and intent, to be a blessing.

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It is homeschool convention season here in the US.  As the current school term winds down, families are planning their purchases for next term.  This also means that curriculum catalogs are starting to arrive in the mail.  I always have enjoyed looking through them to see what new products are available.

Yesterday, the post brought a catalog from Memoria Press.  This is a curriculum based on the classical education taught to earlier generations.  What makes this one a little unique is the emphasis on teaching children Latin from a young age.

As I read through the catalog, I came across something that excited me.  They included in the catalog their Special Needs Curriculum.  According to the website, these lessons are designed for ages 2-21, which pretty much covers the entire school career of a person with significant learning disabilities due to their special needs.  A writer of the curriculum, Cheryl Swope, and her husband home-schooled their 19-year-old adopted special-needs boy/girl twins (autism, learning disabilities, and mental illness) from the twins’ infancy with classical Christian education. She holds a lifetime K-12 state teaching certificate in the areas of Learning Disabilities and Behavior Disorders. She has worked with special-needs children, youth, and adults for over thirty years, … but nothing compares to the humbling education she receives walking alongside her own children daily through their struggles and achievements. (Taken from the article: Words of Wisdom: Cheryl Swope on Teaching Special Needs Children Classically)

The curriculum starts out with a program that is designed for 2-3 year olds.  For parents of special needs children, this age refers to their cognitive/developmental age rather than their chronological age.  For families without a special needs child, you can use the age information as the chronological age.  The following is a chart of the age ranges & programs available.

Simply Classical Curriculum, Level A, ages 2-3 years

Simply Classical Curriculum, Level B, ages 3-4 years

Simply Classical Curriculum, Level C, ages 4-5 years

Simply Classical Curriculum, Level 1, ages 5-6 years

Simply Classical Curriculum is a full program and it also has plenty of supplemental materials if needed.  The lesson plans for the Levels A-C include a space to record therapy homework/activities which makes it easier for those having to follow an IEP program.

The program can be completely tailored to the child’s specific needs.  You can take it as slowly as necessary to ensure that your child is retaining the information and skills being taught.

I am seriously looking at this as a foundational curriculum for Pookie.  The Letter of the Week curriculum that I previously talked about can be used as supplemental work.  After years of searching for a homeschool program designed for children with significant developmental delays, this curriculum may be a great find.  It is definitely worth looking at.

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