The Choice of Giving

Do you know the difference between Autism and FAS? It may surprise you that many children who are actually FAS (Fetal Alcohol Syndrome) are diagnosed with Autism.

Why is that you may ask? Well it has to do with labeling. For a child to be diagnosed FAS communities often view Mom as someone who did this to their child, or “that woman drank throughout her pregnancy” and you know what, that is so wrong. FAS researchers in fact will tell you that many women don’t even know their pregnant when the damage is done, as Fetal Alcohol Syndrome happens in the first few weeks and before Mom knows she’s pregnant. In fact there is no safe level of alcohol consumption. Alcohol affects everyone differently everyone metabolizes alcohol at differentl rates. Some women can and have had a glass a wine with no affects, where as another woman had done the…

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A Blog List of Popular Posts for Families Affected by Autism

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I’ve compiled a list of all informational blogs on Autism and for families of all Special Needs Children.

1. How Does Autism Affect Families?

2. How Does A Child With Fetal Alcohol Syndrome Get Diagnosed With Autism?

3. Autism In Public Schools

4. When You Suspect Your Child Has Autism

5. Why Are Autistic Children Not Included In Community Programs?

6. The Forgotten Siblings Of Special Needs Children

7. Profiting Off The Back Of The Special Needs

8. Autism ~ How Do You Tell A Parent There Is Something Wrong With Their Child?

9. What If Your Child Were Diagnosed With Autism

Upcoming Blog ~ Dietary Considerations for Autistic Children

How Does Autism Affect Families?

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Can you imagine your child who you love more than your next breath—a child who doesn’t fit in with other children. Has meltdowns in public, doesn’t talk, plays alone doing the oddest repetitive movements. Makes odd squeaky noises over and over, and instead of playing appropriately when your friends or acquaintances come to visit, climbs all over the adults latching onto their legs and hoots like an elephant.

You can’t reason with your child, and he/or she doesn’t appear to understand. And you’re at a loss as to how to how to communicate with him.

Of course it’s frustrating, but so are obtaining services for your autistic child. And if you’ve persevered and were lucky enough to get your child diagnosed, and if you were connected with a parents group in your area with autistic children. Then you’ll have valuable information for resources that the highest percentages of parents with autistic children don’t have.

Ask yourself what this does to families? Did you know the divorce rate is upwards of 85%? Ever wonder why? Take a look at the community programs and parent groups, and what you’ll find is they’re mostly driven and led by mothers.

For most mothers their children’s welfare is in the forefront of their mind, along with caring for the needs of other siblings, balancing a job, paying the bills etc. And what happens is Dad checks out–emotionally, and in many cases he’s unable to get with the program.

Take a look at what Mom’s dealing with and you’ll understand maybe Dad’s feeling left out, helpless, emotionally cut off. But who’s the one beating every bush to find therapy for their child and resources? The highest percentage of the time it’s Mom. And what she doesn’t have time to do is hand hold, or make things easier for Dad. That’s not up to her. Frankly she’s exhausted and doing everything imaginable to keep her family together.

But let’s be fair. Do all men checkout? No. In fact there are a few strong amazing men who have stepped up to the plate to advocate, pound on doors, and fight for help for their child. As well as a few strong men, who come together in harmony with their spouse to share the emotional strain that the early stages of autism takes on families.

Ever asked yourself why so many Dads of special needs children are not in the picture, or have any part of advocating for their child?

How Does a Child With FAS Get Diagnosed with Autism?

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Do you know the difference between Autism and FAS? It may surprise you that many children who are actually FAS (Fetal Alcohol Syndrome) are diagnosed with Autism.

Why is that you may ask? Well it has to do with labeling. For a child to be diagnosed FAS communities often view Mom as someone who did this to their child, or “that woman drank throughout her pregnancy” and you know what, that is so wrong. FAS researchers in fact will tell you that many women don’t even know their pregnant when the damage is done, as Fetal Alcohol Syndrome happens in the first few weeks and before Mom knows she’s pregnant. In fact there is no safe level of alcohol consumption. Alcohol affects everyone differently everyone metabolizes alcohol at differentl rates. Some women can and have had a glass a wine with no affects, where as another woman had done the same during pregnancy and her baby is born with severe FAS. So to label a woman as irresponsible, a drunk who damaged her child, is not only reprehensible, but not factual, and that fear of being labeled will keep some parents from have their child correctly diagnosed, and some will refuse to have their child diagnosed for this fear of becoming an outcast.

But why would a professional intentionally misdiagnose? Well unfortunately it has to do with money, position, status in your community and your skin color. That’s why the highest percentage of FAS diagnosed children are from poor families, native population, or ethnic background. White women, white children are rarely diagnosed with FAS; instead Doctors will diagnose them as Autistic. Autism and FAS have similar symptoms and behavior. But that’s it. There is in fact a huge difference in both these conditions. Autism damage is repairable that’s why autistic children in the right credible therapy program make incredible progress. The damage to a child’s brain with Fetal Alcohol Syndrome is irreversible. But there is still incredible therapy for children with FAS that really works. And without the right therapy, children with FAS face a troubled future.

How many of you would know the difference between FAS and Autism?

Autism in Public Schools

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So what does this look like?

Well for one, this can one of the worst nightmares of your life, or can flow quite smoothly. And depends on a number of scenarios, your school administrator (principal), your school district, unions, and how proactive your parents group is in your area.

Instead of focusing on what doesn’t work, and the current nightmarish situations in many schools, focus on school districts that are successfully doing pro-active programming. Keep in mind precedents have been set so use them to set up a unique program in your own district–your own school.

In a public school to have successful program it begins with administrators (principals) who know how to think outside the box and see the genuine benefits to all students. And remember too, what’s laid out below the school district is not footing the bill; parents are coughing up the money from their own pocket.

Your child’s in an authentic autism program, run by a qualified consultant with a proven track record, not some pseudo therapy or copycat therapy where parents have dished out their life savings with little to no results. I’m talking about credible therapy where your child has made milestones in their progress. You’ve established with your school district this genuine therapy, hopefully with a group of parents who are doing the same. What happens next is this:

1. Your qualified consultant is allowed into the school to put together program/curriculum/training for the EA working with your child and the teacher. And remember the parent is footing this bill, not the school. (I will keep harping on this as many parents get quite upset by this uniqueness believing it will somehow take from their child, that its unfair and money is taken from the school district to benefit just your child).

2. The Educational Assistant hired in the school to work with your child, must be part of the home team with a required number of hours to ensure consistency between school and home.

3. Your consultant sets goals, creates programs for academics, socialization, peer interaction, language and behavior. She establishes strategies, and changes what doesn’t work. These kids work hard, but these kids make real progress with the right therapy. And remember this Educational Assistant (EA) who this parent has trained with money from their pocket, is also helping other children in the class who fall between the cracks. Why? Because of all the unique training this parent has paid for.

4. At all times the parent is in the loop. Knows their child’s progress. As the EA is keeping data/records shared with the consultant, school, and parent.

Does this not sound like a win win situation for everyone?

 

When you suspect your child has Autism.

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Although this information is focused on Autism, it applies to other special needs. For the purpose of this blog, I’m focusing on autism.

When you suspect your child has autism. What happens to parents is a sense of being “overwhelmed”; add in lack of knowledge and “what do we do first.” For the purposes of this post, I decided to offer a simple checklist from a parent’s perspective–a parent who has stumbled through those beginning steps.

1. Contact your local Independent Autism Society in your area, not a government agency. Ask for a contact name of a local parents group. This local parents group should have several knowledgeable parents who have already navigated the system before you. And these are the people you want to talk to because what they’ve learned the hard way, and will steer you down the right road making your already stressful life much easier. These parents cannot take on your load and do for you, no one can. What they can and will do is provide you with the tools/correct information you need, which will include:

a)     Who to contact to get your child diagnosed. Costs, different options, where to go for diagnosis. Private clinic or government-funded (depending on your location). Who to avoid and why?

b)    Credible therapists, consultants and autism programming. What options do you have? And please remember with any autistic child involved in a credible therapy, there will be documented progress. If an autistic child has made little to no progress, there is something wrong with the child’s therapy.

c)      Tax Credits – very important. ***Depending on your area. Once your child has been diagnosed. You should be entitled to a certain tax credit. Your local parents group will be up to date on this for your area. You’ll need this money to start a therapy program.

d)    Government Funding/ Grants – How much is it? And is there any available in your area? How do you access it?

e)     How do you run a therapy program? Who to hire? Who to stay away from.

f)      What about inclusion of alternative therapy? Diet? Holistic Approach?

g)     Autism in the Public School System: How do you include your child’s therapy in school?

h)    How does your local school district support your child’s unique needs?

And last I thought I’ll leave you with this warning: Slap on your thick skin cream. Because you’ll be flooded by people, strangers, family, friends, who’ll offer, sell, or know of someone providing some miracle cure to your autistic child. When you say NO. Some will lash out with “you’re a horrible parent for denying your child this chance.” It’s happened to just about every parent with an autistic child.  Brush it off and let it go, and remember you know what is best for your child.

Sometimes we forget as we struggle with our busy schedules that not every parents load is the same. And every one of us is different. Some parents won’t recognize the signs of autism, and many have questioned their family doctor only to be told, “he’s a boy, or he/she’s just a little delayed, or your child will grow out of it.”  How many parents do you know who ran into this same obstacle with the medical community that delayed their child’s opportunity for early intervention?

I will continue this series on Autism, with – Autism in Public Schools

Why are Autistic Children not included in Community Programs?

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Annual Autism Awareness Giveaway Hop  April 11th to 17th  Hosted by: Lindsay Just Another Book Addict: http://justanotherbookaddict.blogspot.com/

 Heather @ Fire and Ice:
Pixie @ Page Turners:
Kathy @ I Am A Reader, Not A Writer: http://iamareadernotawriter.blogspot.com/

April is Autism Awareness Month.  To help spread the word about Autism we are hosting a giveaway hop. As part of this giveaway I will be offering one copy of The Forgotten Child as an eBook in your Choice of Format for international, and One Print copy for US residents only. In order to enter this giveaway please leave a comment with a way for me to contact you.

Each participating blog is hosting a giveaway.

Why are Autistic Children not included in Community Programs?

Could you imagine doors closed to your child? When you don’t have a child with autism, it’s hard to imagine. For parents who have a special needs child, I’m sure everyone experienced the closed door.

Autistic children are not typical. They’re struggling to fit in. They have obstacles to overcome other children don’t. What comes easy to the typical child, school, sports, having a conversation, shopping with mom, doesn’t for an autistic child. Everything they do—they must learn to do. From having a conversation, playing sports, life skills, social skills, simply put how to play with other children. And they work ten times/a hundred times harder than you and I.

It’s only natural for parents to want their autistic child to be included.

How many community organizations have an open door policy to children with Autism? I’m talking about your local sports teams, after school programs, local swim club, 4H Club, football team, hockey team, girl guides, scouts just to name a few. Take an honest look in your community and see how many autistic children are part of these teams, and clubs.

With the staggering numbers of autism, which doesn’t begin to include all the other special needs children, how many of these children do you see enrolled in one of the local programs? Would it surprise you to hear none or very few? But let’s be generous you may find one or two where the parent has fought with the local gaming board or organization for their child’s right to be included. Or schmoozed and done everything including standing on their head to make it happen.

Most of these clubs cater only to the typical child. And it’s up to the discretion of the leader running each club whether a special needs child is allowed to participate. And the number will be capped. Even though the parent is required to pay for an aid, and supply the aid to accompany that child. This is yet another battle exhausted parents must face. So it’s with little wonder many don’t push. How much energy do you think parents have left after dealing with therapy, school politics, life skills, and everyday basic functions for their autistic child? Let’s be fair not everyone’s made the same, and who can blame a parent for saying, “I don’t have the energy to battle this local club too.” And remember these local leaders are from your community so to defend your child’s right to be included you may alienate the leader, which can close other doors in the community to you. For many parents once denied is enough.

Why would community groups not go out of their way to welcome autistic children? Quite often it’s the comfort level of the leaders. Their afraid of someone who’s different and they don’t have the skills needed to help the child. It would change the dynamics of the club and maybe how the leader envisions that sport or club has to be. What if the child has a meltdown does something different—embarrassing? They won’t be able to participate at the same level as the other children. They’ll hold the other kids back. How will the other kids react? An autistic child can make other children uncomfortable. But that starts at home, I teach my children to always include other special needs children, to find out how to work with that child, how to include them.

As many parents with a special needs child will tell you, this is just one more obstacle their child must face. Autistic children want to be included. They just don’t know how to cross the barrier. They pick up on everyone’s anxiety, discomfort. To say the other children would be uncomfortable is unfair. Because the greatest gift and greatest success an autistic child has, is learning from their peers. And what about the other children, what kind of skills do you think their learning by including an autistic child. How do you feel about the closed-door policy? Isn’t it time children are taught skills needed to work with an autistic child?

The Forgotten Siblings of Special Needs Children

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The Forgotten Siblings of Special Needs Children

You’d think this is a no brainer. Nevertheless, when there is a special needs child you do everything financially and emotionally to help your child. But what happens when you have other children?

I listened to a speech not long ago at a local toastmaster. A young twelve-year-old boy arrived with a family friend and took the invite to try an impromptu speech. He spoke about his brother who had autism and that even though he too had dreams to join some sport or participate in a community club that cost money, he was not allowed. Not because his parents didn’t love him, but because they couldn’t afford the extra cost. And what he said had me sit up a little straighter, “My brother comes first, we must sacrifice for him so he can get the help he needs.”

When you have a special needs child, a child with autism, the cost for therapy alone is astronomical. It’s also imperative your child does therapy. However, ask yourself this, is it better to sacrifice any hope that special needs child has at his or her own independence because you can’t afford it? Your other children have dreams to participate in some activity that costs money, why do you have to choose?

Many parents are faced with this decision. And without early intervention and the right credible therapy special needs children face a bleak outcome. Adulthood in a group home, an institution or being cared for by their aging parents or sibling.

The average person is not a millionaire. Far from it. And the high numbers of special needs children means parents will spend everything they have to help their child. This is where siblings can be left out and feeling they are the sacrifice. They ask Mom and Dad if they can join hockey, football, a recreation program, or music lessons, but are told “no” because we can’t afford it. The sibling grows resentful because they have to go without. How do you balance both so your special needs child gets the help they need and the other siblings are able to participate in activities they choose?

Think about it because the answer’s not as easy as you may think. It requires creativity and community support.

1. Therapy for the special needs child should include the whole family. Make it fun. Steer away from one on one therapy, where your other children are excluded or have to be quiet in the house when therapy is going on. Many special needs children do not want to be separated from their siblings. There are creative options that benefit everyone–creative options that work.

2. Many parents have sold their homes, everything of value. Increase lines of credits, credit cards, which yes brings on a whole new set of problems. “But it’s only money,” as one parent said. “And your children are more important than that luxury car or house. Things are just things.” Yes these are quotes from I know, parents that have done this.

One of things I firmly believe and advocate for is every community should offer activities, sports, community clubs for free to the siblings of special needs children, as well as to the special needs child, especially where the family is financially burdened. And it should be done in a way the family and children are not labelled or ostracized as charity cases.

In one community when a parent swallowed their pride and asked for some assistance for community activities from the local community charity that offered this funding they were given free passes to the local swimming pool. But the swimming pool was required to keep the pass card, this was the policy. So when the parent arrived with the children and asked for the punch card The Lady behind the desk announced loud enough for the entire line of patrons waiting to pay, “oh yours in the one provided by that charity for those who can’t afford to pay. It’s a different color, no wonder I couldn’t find it?” Now how do you think that parent and siblings felt? I’m pretty sure they never went back.

 

 

 

 

 

Profiting off the back of the special needs.

Profiting off the back of the Special Needs.

I don’t know of any greater crime. And one that’s more prevalent today.

How much attention and regulation is given to such a serious problem? You’d be surprised to hear none in many areas.

With the increase in autism levels to epidemic proportions, and with government funding for therapy available in some areas of the country—what’s happened is a big surge in autism experts. In one area of the country the government came out with a highly coveted qualified service providers list—this list is provided to all parents with a newly diagnosed child. To be paid with government funding, the service provider must hold a master’s degree.  That’s great you think. But the specifics of the master’s degree are not defined. You could have a master’s degree in animal husbandry and find your way on this list.

Ask yourself how a person with a master’s degree in animal husbandry has any qualifications to work with an autistic child, or design a program to help them? Now take the overtired parent who’s scrambling, going through a grieving process, their stress level is high and their coping skills may be low from exhaustion from caring for their autistic child.

These parents then struggle to find someone who’ll help them. They take this coveted list given to them by their appointed social worker–and remember social workers are not allowed to recommend. The parent begins calling, and finds wait lists, no availability, until they get to page ten and “hurray” they find someone with an opening who’ll take them on immediately.

This said professional meets with them has them sign a contract for a ridiculous rate, begins a series of programs from a book. The exact same program they’ve put together for all other autistic children they’re working with. But the exhausted parent doesn’t know this. The professional train’s therapists to implement this therapy program and all are invading your house, your space, and its hundreds of man hours in the beginning just to get started. The billing exceeds the funding provided by the government, so new parent is paying thousands of dollars out of pocket, and maybe struggling at the same time to pay other bills. But then the programs may not make any sense and your child is making minimal progress if any. Your expert/consultant/professional then comes back to you and says your child’s not making progress because you’re not implementing the program correctly. So in your frustration you start making calls, finding other parents, talking with them about your hired professional and the programs, and you find out he or she has done this to every parent they’ve worked with. Maybe even taken a huge retainer and kept it without providing service. Because they know the chances the parent will take legal action against them are slim.

Many parents have been this route and some have stopped doing any kind of therapy–because they’ve been shafted. Filled now with bitterness to a system that doesn’t protect their children, and the parents who are searching for help they know exist.

Before hiring any professional to work with your child understand this. A true qualified professional will gladly provide names of other parents they’ve worked with. And do your due diligence. Call them, talk to them about their child’s progress, about this particular professional, how they are to work with, their experience, background, success rates. The right therapy works and a child will have remarkable progress with the right program. Most seasoned parents will invite you into their home to watch their child’s therapy, go and take a look. Because therapy is individual and must be tailored for each child–it may not be right for your child and your family.

One of the reasons this problem exists is qualified therapists, programs and consultants are few and far between, and most have closed wait lists. But the persistent parent can overcome this barrier with help from other parents who’ve already successfully worked the system.

Some key things to keep in mind before choosing a therapy and hiring anyone.

1)      What are the professional/consultant/therapists qualifications?

2)      Who have they worked with?

3)      Success rate and get names.

4)      Get names of other parents from the professional and call them.

5)      Never take a list from a government worker and start making calls.

6)      Contact your local parents group first. Get their references and recommendations for therapies, consultants, professionals and most important–meet with a seasoned parent. I can’t stress this enough. And most seasoned parents will come to you.

7)      Get the names of qualified people from parents to work with your child. There will be options.

8)      Ask the parents which consultants/therapists to stay away from and why. There will be a reason.

9)      Don’t blindly take the first one, check their rates. Some will refuse to work unless you pay upfront. And costs can be exorbitant and come with conditions. Example, when you fly the professional in because there is no one qualified in your area, they will only stay at a five star resort and you’re footing the bill.

I look forward to all comments. The only thing I ask. If you are professional working with autistic children or have a therapy for autistic children to sell, please do not provide a link to your site in your comment or promote yourself. I am checking.  There were a few comments on my last post that did this and I didn’t post the comments.

I’ll leave you with this question. How many of you know of a parent or parents who have paid their life savings to some professional who promised miracle cures for their autistic child, and their child made no progress?

Autism~How do you tell a parent there is something wrong with their child?

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I was asked this question not long ago by a teacher at a public school. How do you tell a parent their child has autism? And my reply, “Carefully”.

What most people don’t realize is how difficult it is for a parent to hear that word, Autism, even the suggestion they display all the symptoms. A parent doesn’t want it to be that. What a parent wants to hear it’s just “this” and all you need to do is a simple change of diet or even a pill and all will be well.

But it’s not that simple. In fact there is a grieving process that occurs for parents when they first find out something’s wrong with their child, and again when they are handed that diagnosis.

For school personnel, professionals and members of society please understand it’s not as simple as sitting a parent or parents down and telling them, “We suspect your child has autism you need to investigate and get your child diagnosed,” and then leaving them to figure out what to do first.  Imagine this, “you’re in the middle of the ocean treading water, someone in a boat comes by and stops in front of you and yells out, “you’re drowning,” then speeds away without even tossing you a life-preserver.

If you’re wondering what I’m getting at. When a parent first hears their child may have autism, their response is going to be anger, shock, sorrow, fear, any number of emotions. What’s worse is leaving them to figure out on their own what to do. One of the most important pieces of information I’d hope anyone would remember is pass them a name of parent who has a child with autism who has successfully navigated the system. There are many parent groups, and their motto is never turn your back on a new parent. So by putting them in contact with another parent you’ve just thrown them that life-preserver. You’re giving that parent hope and a chance for a successful outcome for their child. Even though you may work with autistic children, it’s not the same as being a parent.

Why would I suggest a parent instead of a doctor or other professional? Ask any parent who’s been down that road, and they’ll share with you any number of horror stories of dealing with umpteen doctors only to be referred to yet another, because they don’t know or they can’t diagnose, and the state or provincial agency that does do diagnosis, has a procedure in place. This procedure can be different with every jurisdiction which could be meeting with certain professionals, such as speech and language pathologist, occupational therapists, pediatricians, an entire team which may have at least a two-year wait list and political agendas in place.

A parent who has been there can help a new parent by providing them the correct information that will hopefully make it easier.

Knowledge is power. And it’s important to empower parents. Some of the key points a parent or parents group can provide to a new parent are:

  1. Funding sources.
  2. Diagnosis, how to go about. What and who to avoid. Who you do want to call.
  3. Therapy. Providing a list of credible therapists with a proven track record.
  4. Who to avoid (yes again), who has scammed other parents or fleeced them of their life savings with promises of miracle cures. (And most likely every parent with a diagnosed autistic child has been a victim of this in one way or another.)
  5. If they are associated with the government in any way, run the other direction. Ask a parent they’ll tell you why.
  6. In some places when your child is diagnosed with autism you are assigned a social worker, because governments view this as a social problem, not a medical condition.

This list can seem daunting. But it’s not that bad. If you’re given the right information you can successfully navigate the system in your child’s best interest. And remember it’s important to give the parent the tools to do for themselves, not do for them.

If you are a parent with a child with autism what other information would you provide to a new parent who needs to know what to do first?