The financial toll of autism
By Jessica Dickler @CNNMoneyApril 2, 2012: 10:47 AM ET
NEW YORK (CNNMoney) — Raising an autistic child can take a tremendous financial toll, even when insurance helps cover some of the costs.
Kim and David Picciano’s three-year old son, Colton, was diagnosed with autism eight months ago and they pay roughly $1,000 out of pocket each month for all of his therapies.
“It’s not all covered… we have co-pays,” said Kim. “Right now, I’ve been fighting with insurance since August to get him occupational therapy.”
The cost of providing care for a person with autism in the U.S. is an estimated $1.4 million over their lifetime, according to a study funded by advocacy group Autism Speaks. For those with autism who are impacted with intellectual disabilities (with an IQ of 70 or less) — nearly half of the autistic population — the cost jumps to $2.3 million.
That’s in addition to the standard costs associated with raising a child, including food, education and housing.
‘Child care costs are killing us’
“The burden on families affected by autism is enormous,” said Mark Roithmayr, president of Autism Speaks. “Immediately parents are faced with bills that are not being covered so they turn to second mortgages or home equity lines of credit, then they turn to credit cards and other family members and at that point they are out of options.”
Kate Movius has spent nearly $200,000 in the eight years since her 11-year old son Aidan was first diagnosed with autism.
In 2005, she took out a $30,000 home equity line of credit so she could afford alternative treatments like vitamin therapy, on top of the occupational therapy, speech therapy and behavioral therapy she was already paying for. “You are so desperate as a parent and you just think I’m going to do everything I can,” she said.
Since then, Movius says she has reined in some of the expenses. Today, Movius estimates her family spends $9,000 to $10,000 a year on un-reimbursed medical costs, but it’s hardly enough.
“We would have him in more therapy if we could afford it.”
The rising cost of raising a child
While medical costs, such as outpatient care, home care and medicine, contribute significantly to the total expense, non-medical expenses, including special education, therapy, daycare and care and housing for adults who age out of school and can no longer live at home with their parents, account for the largest proportion of autism costs, according to the study.
Altogether, the total annual cost to the U.S. is estimated to be $137 billion, according to Autism Speaks, as more children than ever before are being diagnosed with autism spectrum disorders, or ASDs.
About one in 88 children in the United States are now affected, according to a recent tally by the Centers for Disease Control and Prevention, that’s up 23% from the CDC’s last report in 2009.
Adding to the severe financial strain, families with autistic children also earn 28% less overall compared to families whose children do not have health limitations, according to a recent report in the journal Pediatrics. For mothers, the disparity is even starker, with earnings that are 56% less than those of mothers of children with no physical or mental limitations.
Child care: What do you pay?
That’s in part because mothers of kids with autism leave the workforce, or take lower paying jobs with more flexibility to coordinate all of the services an autistic child needs.
The Affordable Care Act, passed in 2010 and currently before the U.S. Supreme Court, is meant to help more people get affordable health insurance coverage, but it is uncertain what impact that will have on the rising cost of autism, Roithmayr noted.
Still, “without it, we’ve got one million families with the potential of going bankrupt,” he said.
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We can really relate to this article. And things were completely not covered 17 years ago. However, I wouldn’t change a thing that I did to try to help him recover, or cope.
I chose to leave my career 17 years ago – temporarily, you see, because I was going to “fix” him. I’m still trying. One of my passions is to help other mom’s find a way to bring in a supplemental income along side of “fixing” their child. I can help. If you know of someone who could benefit, contact me. It’s been a huge blessing to our family.
We love our kids – no matter what, right? I mean – through all the good and the bad — how can you not love this face? 
Becki
Could Autism Be Caused By One of These 10 Chemicals?
The link between autism and 10 common environmental toxins — including flame retardant, vehicle emissions, and microwave popcorn bags — must be explored, top doctors say.
THURSDAY, April 26, 2012 — Doctors from the Mount Sinai Children’s Environmental Health Center in New York are calling for renewed efforts to examine the role of toxic chemicals in causing autism and other neurodevelopmental disorders, like ADD/ADHD.
While the causes of autism remain unknown, most researchers suspect a combination of genetic and environmental factors are responsible. Health professionals estimate that 3 percent of neurobehavioral disorders are caused directly by exposure to toxic chemicals, and that another 25 percent can be blamed on interactions between environmental and genetic factors, said an editorial published yesterday in the journal Environmental Health Perspectives.
“A great concern is that a large number of the chemicals in widest use have not undergone even minimal assessment of potential toxicity, and only about 20 percent have been screened for potential toxicity during early development,” writes Mount Sinai Children’s Environmental Health Center director Philip Landrigan.
“Knowledge of environmental causes of neurodevelopmental disorders is critically important because they are potentially preventable,” they added in a press release coinciding with the published editorial.
The Terrible 10
In December 2010, the Children’s Environmental Health Center hosted a symposium called “Exploring the Environmental Causes of Autism and Learning Disabilities.” Co-sponsored by the autism advocacy group Autism Speaks and the National Institute of Environmental Health Sciences, the workshop’s goal was to discover preventable environmental causes of autism and other neurodevelopmental disorders. The gathering also developed a list of 10 chemical/environmental suspects:
Lead
Found in paint, dust, drinking water, some canned imported food, older toys, some imported toys, lead-glazed or lead-painted pottery, and some inks.
Methylmercury
Methylmercury is not the same as ethylmercury, the form found in Thimerosal, the controversial preservative formerly used in vaccines and which some believe is linked to autism. Methylmercury is released into air and water mostly from industrial emissions. It is the form of mercury that is found in high concentrations in some fish.
PCBs
The U.S. government banned production of PCBs in 1977, but they continue to be released into the environment from hazardous waste sites and from illegal or improper dumping. PCBs are also found in some types of caulk used in building materials, including in some schools.
Organophosphate pesticides
These make up the majority of pesticides used on fruits and vegetables ingested by pregnant women and kids in the United States.
Organochlorine pesticides
Less common, organochlorines are still used. The most infamous organochlorine is DDT, which was fully banned in the United States in 1972.
Endocrine disruptors
Endocrine disruptors are chemicals that can potentially interfere with prenatal development. There are literally hundreds of endocrine disruptors, the most well-known of which is bisphenol-A, or BPA.
Automotive exhaust
Toxins of concern in motor vehicle exhaust include carbon monoxide, nitrogen dioxide, and sulphur dioxide.
Polycyclic aromatic hydrocarbons
These chemicals are found in an array of sources — from cigarette smoke and burning coal to industrial waste incineration and hazardous waste sites.
Brominated flame retardants
These fireproofing chemicals are added to pillows, vehicle seats, fabrics, and some electronics — including computers.
Perfluorinated compounds
PFCs are found in sources as varied as water-resistant clothing, some non-stick cookware, and microwave popcorn bags.
Plastics, lead, pesticides, motor vehicle exhaust… the list is long and the suspects are many.
Happy that it’s open to discussion.
Becki
Just one mom’s opinion
From this:
To this:
In just a matter of months…
Blank stares and total loss of language. Panic sets in (as seen in my blank stare behind him). The journey begins.
I’m not opposed to vaccines. I’m opposed to the vaccination schedule and the ridiculous profits from that industry.
Strong words from a strong mom.
Dare I be so bold.
It’s time to be heard.
SLOW DOWN and let the child’s immune system develop before it’s bombarded with ‘disease protection’.
Stop. Breathe. Educate yourself. Then choose your vaccines with your pediatrician.
Don’t let the state decide for you.
This has got to be a piece of the puzzle.
Just one mom’s opinion,
Becki
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Mandatory Vaccines in New Jersey: Then and Now
NJ Mandatory Vaccine Schedule Comparison
Children: Birth to 6 years – By Year (Recommended Month)
| USA 1983DTP (2) OPV (2) DTP (4) OPV (4) DTP (6) MMR (15) DTP (18) OPV (18) DTP (48) OPV (48) |
NJ 2009HepB (0) HepB (2) DTaP (2) HIB (2) IPV (2) PCV7 (2) DTaP (4) HIB (4) IPV (4) PCV7 (4) HepB (6) DTaP (6) IPV (6) Influenza* (6) Influenza* (7) DTaP (12) HIB (12) Varicella (12) PCV7 (12) MMR (18) Influenza* (18) Influenza* (30) Influenza* (42) DTaP (48) IPV (48) MMR (48) Influenza* (54) |
5 Ways to Make a Difference on Earth Day
Every day should be Earth Day, but here’s a terrific article to remind us of little things we can do to help do our part. Nothing is too little! Filter your own water, carpool, use concentrated products to reduce plastic use, make sure you are using products without harmful chemicals that wash down the drain, and educate yourself and pass it on to your children. Everything makes a difference!
This article is from Udi’s ~ one of THE best manufacturers of gluten free products. We love their bread, muffins, pizza crusts and even donuts. Tony is a huge fan! Find them in your local natural foods store or visit them online at www.udisglutenfree.com
Go green! We hear or see this phrase almost every day on television, while out shopping, or in the workplace. Today is the perfect time to add some more “green” to your life, since April 22nd is Earth Day ! Did you know that this year is the 42nd anniversary of the holiday and that it is celebrated in over 175 countries around the world? Even more reason to ditch some of your old ways and help make the planet better!
Here are five easy changes you can make to make a difference on Earth Day:
- Ditch the plastic bags!
According to The Daily Green, twelve million barrels of oil were wasted last year in the production of paper and plastic bags in the United State alone. That’s a lot of oil that we could be saving! Also, plastic bags take a very long time to decompose in landfills, adding to our country’s waste problem. This Earth Day, make the switch to reusable shopping bags for good! Not only do you help to save the planet, but some stores even offer credits for using reusable bags. And they make toting groceries so much easier. - Don’t buy bottled water!
Switch over to an aluminum or stainless steel reusable water bottle that will last you years, instead of just one day. Disposable water bottles are a huge contributor to our landfills and this problem can easily be addressed. - Recycle and upcycle!
We all know about recycling common goods like cans, paper, and glass, but have you ever considered upcycling? This Earth Day, take something you’re going to dispose of and turn it into something of greater value. For example, I reuse my Udi’s Gluten Free Blueberry Muffin containers to grow spices in during the winter. They are a perfect size for the job and it makes me smile since I’m saving myself money and saving waste from the landfill. - Plant a vegetable garden!
Celebrate Earth Day by rounding up the family and starting a vegetable garden! Not only is this a fun activity for the whole family, but it also helps the environment! Growing your own vegetables reduces energy use by eliminating the need for transporting the food and selling it in a conventional store. Also, you’re helping your family by eliminating any pesticides or toxins that can be found in mainstream vegetables. - Volunteer your time!
Earth Day is the perfect time to volunteer some of your personal energy to the community. Help with a clean up, provide education sessions to community members, or help plant trees in a park. The opportunities are truly endless! The Environmental Protection Agency’s website compiles local events from all over the country to help you find the perfect event to attend. Bring your family and friends to really make an impact on the community!
Here’s to doing our part,
Becki
How can you help mothers of children with autism?
Another great blog I found from a Twitter friend of mine ~ Worth sharing
Feeling helpless is no fun. Moms of children with Autism often feel helpless. They often feel alone because their children have difficult behaviors. Sometimes they isolate themselves because they don’t want to answer questions or feel they are the subject of a pity party. Sometimes they just don’t know where to turn. This is a common feeling for many parents who have a child diagnosed with Autism.
But those looking on can feel helpless too…
In speaking with many friends of families with children who have Autism, they often aren’t sure what to do. Do they bring it up or not? Do you jump in and help out or will that offend their friend or family member? They often feel like they want to help, but like their friend, they do not even know where to start.
So, how can we help our friends, family, neighbors, and community members who have children with Autism? There are many things fellow parents can do to help their friends in need. The key will be to always put yourself in their shoes so you can try to avoid any missteps.
First things first: Always Ask For Permission Before Jumping In. Don’t Assume Anything.
This is really critical. Think of a time when you were trying to manage something. You had a plan, you had some resources, but the implementation of your plan may not have gone as expected. You knew what to do and were trying to get there…
Jumping into a situation like this may not only be annoying, it may actually be offensive.
For those who are on the outside, asking before jumping in to help is always a good rule of thumb. This really gives the parent the opportunity to either accept or decline your help, while still remaining in control. It is important to remember that this is their family, and as a parent you can appreciate that they are the decision makers.
Second: Unless You Are Experienced Working With Someone With Autism, Offer To Help In Other Ways.
Just like our first tip, if you are not directly involved with the child, you will want to take a more passive approach to helping the parent. This is for a couple of reasons. First, the child may not know you, so getting involved may make a stressful situation worse. Second, the parent will have more knowledge about the program and skills that are being taught. In this case, you can offer to help with things that don’t involve the child with Autism. Having those other To-Do’s taken care of could be a huge relief. What mom would not kill for dishes to be done and a load of laundry to be folded when we have a million other things on our To-Do lists.
Third: Be The Best Listener You Can Be.
Sometimes parents just need to vent. It could be about their child’s behavior, their stress, family craziness, work, etc. All of these are important for you to just listen to. Remember how good it feels to talk to someone and let it all out. You weren’t looking for a solution, but just needed someone to hear you. This may be especially true for your friends who are parents of children with Autism.
When you are with your friend, just listen to what she has to say. Are there themes to what she is talking about? If you listen closely enough, you may find something you can help with while making your friend feel heard and supported. This is very effective support for parents.
Four: Laughter Can Be The Best Medicine.
As simple as it seems, it really is true… Laughter is the best medicine. Those that take the time to laugh have better blood circulation to the brain, have more air flow to the body, release tension, and just feel better.
Friends who know a parent well can be really helpful here. They know their friend’s funny bones the best and can make them laugh at just about anything. You can offer a different perspective because you are outside of the situation. Sometimes, in the most stressful of situations, we can find something that is funny. I remember a parent I worked with who was stressed out when dealing with her child who smeared feces. From the parent’s perspective, it was terrible. It happened frequently and she felt that she was constantly cleaning the mess. Her daughter would often smear in the same places, making the paint begin to fade. Ironically, she hated the color of the room so one day we had a good laugh that she might actually get the opportunity to change the color as a result of all of her cleaning. Flipping the switch can reveal a different outlook for parents under stress.
Let’s look at some other situations and talk about ways moms can help other moms.
Autism can take over a mom’s life. There is so much going on with therapy, speech, doctors, school and behavior that the mom of a child with Autism often doesn’t have much time left for anything else. Here are some things you can do for close friends and family members who have children with Autism:
- Stay in touch. Keep calling her and stopping by even if she isn’t able to reciprocate like she used to. Don’t make a big deal out of your friendship being more one-sided, with you making more of an effort to reach out than she does. A regular phone call or visit from you will be a bright spot in her week, because she’ll know that you’re important to her.
- Take her out! Help her make arrangements to go to dinner and a movie with you. She may feel like she can’t leave her child, but the reality is that there is usually someone able to care for her child for a little while. Husbands, older siblings, grandparents, neighbors from her family–or yours–will often be more than willing to help out. Even a quick run through a drive-thru for lunch can help clear her head and give her a little break. A small change of scenery can do wonders for her spirits.
- Help her out. Offer to take her kids so she can have time to herself. You may not understand the depths to which she doesn’t get a break, but trust me; moms of children with Autism are always ‘on’. There isn’t much down time in their lives. Children with Autism may require a much higher level of vigilance than most people comprehend. If you can give your friend the occasional opportunity to turn ‘off’ and relax for a little while, it could mean a lot to her and her well-being.
- Work out with her. Again, it’s so difficult for moms of children with Autism to have any time to spend on themselves. Be willing to change exercise routines to accommodate your friend. Maybe in the past you’ve both gone to the gym together, but now she doesn’t feel she can take her child to the daycare there. Take the strollers out and go for a walk or a run instead. If you can be flexible, you’ll still get exercise and time with your friend, and she will too.
- Listen to her. Don’t pretend that everything is normal when it isn’t. Encourage her to open up and tell you what’s really going on in her life. She most likely is overwhelmed and doesn’t see an end in site. She is probably worried about her child’s future. You don’t need to fix things… just lend her your ear.
- Educate yourself. The more you understand Autism, the more you’ll be able to help your friend. Know what resources are available for her. She may be so busy she doesn’t have time to find out herself! Volunteer to go to school meetings with her as an advocate. You know her and her child well, and just having you there can be helpful. Our site, www.ThrivingWithAutism.com, is a great resource for anyone interested in gaining a better understanding of Autism.
With the rates of Autism on the rise, it is highly likely that you have been in the community and come into contact with someone diagnosed with Autism. You may have even seen a parent struggling with a child having a tantrum in the grocery store and wondering why they are not disciplining their child better.
What you may not have realized is that the child was not having a “typical” tantrum where they are not getting something that they want, like their favorite cereal, for example. It is different. It could be because there are too many people, it is too loud, too bright, or the routine of going down the aisle is not the same way it has been the 50 other times they have visited. It is a full-blown tantrum that must be managed by the parent, who may be exhausted and embarrassed.
The point is… it is not a “typical” tantrum you see from a toddler. It is more significant and caused by “something”. Please remember that the parents are not at fault, and they are doing their best to get through the day.
When you see a mom having problems, there are things you can do to help.
- Offer to help. If you see a mom at the mall and her son with Autism is having a difficult time, her toddler is trying to run away, and her infant is screaming in the baby carrier, offer to help. You can sing to the baby, corral the toddler, and give her time to help her child with Autism. (Remember to ask permission first.)
- Educate your children. With familiarity comes tolerance. My children have the unfortunate experience of living in a school district where kids with any kind of special needs are shipped off (ok, bused) to a ‘special’ school. As a result, when they first encounter a child in a wheelchair, or with Down Syndrome, or anything at all atypical, their first reaction is to point and stare.As a Special Education teacher, this drives me crazy! I really wish every child went to their neighborhood school. Help your own children to know that children with Autism may act a bit differently than they do, but they are a lot of fun, too! They will have things that interest them. Help your children to find some common ground and discussion points with children with Autism in your community. Above all, help your children have opportunities to have interactions with kids from all walks of life. It will help build their understanding and compassion for all kids, not just ones who look and act like they do.
So there you go! That’s a nice list of the many things moms can do to help other moms who have children with Autism. When you think about it, these things are really pretty easy to do.
When you think one more time about it, they have nothing to do with having a child with Autism and everything to do with really being nice to one another. Reach out and lend a hand! Everyone will benefit.
For more Autism support and information, please contact Andrea Richardson at www.thrivingwithautism.com or read this article at http://www.shopaholicmommy.com/family-life-2/how-can-you-help-mothers-of-children-with-autism/
Becki
50 things you SHOULD say to autism parents
Part 2: 50 things you SHOULD say to autism parents. Again, thanks to Christine Passey at Autism Island. Be sure to check out her blog at www.autism-island.com.
“50 things you SHOULD say to autism parents.
- How can I help?
- That must be really difficult.
- I think she is beautiful.
- How can I help stop bullying?
- Please don’t feel embarrassed, we completely understand.
- I know you are working around her routine, special diet, sensory needs, therapy, etc. so what works for you?
- You’re a great parent.
- Have I ever hurt your feelings talking about autism? I’m sorry. Please help me understand.
- “Hi _________ (child’s name) how are you?” – Talk to the person with autism, not around them.
- No need to apologize, I understand.
- Can I help you with your other kids while you help your son?
- Can you teach me some ways to work with her?
- Wow, I can see why that might be a small thing for the typical kid, but for your son that is huge. Congrats!
- I admire how much work you’ve done with him.
- Follow your mother’s intuition.
- Can I join your Autism Speaks walk team?
- He is so smart.
- You know your child better than anyone, including: doctors, therapist, teachers, aides, etc.
- What’s the best way for my child to play with yours? I’m sure they will be great friends once they get to know each other.
- How should I explain autism to my kids?
- Let me be a shoulder to cry on. You’re a good mom, especially on your hardest days!
- Don’t say anything. Sometimes a hug is all we need.
- How can I help your daughter feel more comfortable?
- She is uniquely wonderful!
- I understand parenting a child with autism can be completely different from parenting the typical child.
- She has made so much progress.
- His IEP is really working. I’m glad I’ve been sticking to it.
- I know it is hard for you to find a sitter, so how about we come over to your house after bedtime for some adult time.
- I don’t care if your kid turns the lights on and off a billion times, is obsessed with our washing machine, or ________ (insert random behavior here), he is welcome here any day.
- Who cares if she has a pacifier/blanket/stuffed animal/etc. It makes her feel more comfortable. That’s all that matters.
- Hey, I think clothes are annoying too.
- We know he is a good boy, this is an overwhelming situation.
- Let’s get your son a buddy/aide so he can participate too.
- “Normal” is overrated.
- I’m glad your family goes out in public! You need to live your life to the fullest too.
- Tell me about autism.
- Does your son have any diet restrictions?
- What therapy and treatments have worked for your son?
- I was thinking of you. I don’t know much about autism and all you go through, but I know a good diet coke (or glass of wine) helps! – Here, enjoy!
- How well does the school accommodate your daughter?
- It’s not your fault.
- I think __________ (insert child’s obsession here) is pretty cool too.
- Do you need a babysitter? Because I’d love to help.
- Let me hold that/watch them for you while you run after him.
- I know that every child with autism is different, tell me about yours.
- I’ve heard kids with autism are the hardest to potty train.
- What should I do to prepare for your visit? Is there anything I should put away or details I should know?
- I know you just want someone to talk to. So I will listen without trying to solve your problems.
- Really? Insurance companies don’t cover autism? I’m going to write my legislator tonight to change that!
- I want to talk to you about autism and I want to make sure I’m sensitive to your feelings. If I say anything that upsets you please let me know so I can understand your perspective.
Again, special thanks to my facebook friends who helped me come up with this list: Stephanie R., Amanda P., Andrea C., Calleen K., Mary R., Melissa J., Debbie J., Heidi S., Melyssa S., Tanya H., Jessica C., Liz S., Margie W., Dani L., Ashley B., Rochelle O., Monica S., Andrea G., Katrena L., and Karla P., Mirella P., Shelley H., Katrena L.. Thank you everyone, couldn’t have done it without you! (Everyone who helped with 50 things you should not say to autism parents is also included in this since that list helped create this one.) ”
Hope this helps,
Becki
50 things you SHOULD NOT say to autism parents
Saw this on another blog and it’s just too good NOT to share. Thank you to Christine Passey of “Welcome to Autism Island” for sharing this insightful post. I think there’s a lot of good advise here. Check out her blog at www.autism-island.com
“50 things you SHOULD NOT say to autism parents.
I wrote this post for two different people: autism parents, and the people we interact with.
- Autism is over diagnosed.
- I’ve seen Rainman and Temple Grandin, I totally get it.
- He must be really sad to run away so much.
- Stop being so sensitive, they were only joking when they called her a (insert nasty hurtful name here).
- He just needs to apply himself more.
- My kid does that too.
- Why do you let him carry that ______ around everywhere?
- I can’t believe you let your child run around naked.
- You need to make her eat more variety. It’s not that hard.
- At least she can _____. (Talk, walk, smile, etc.)
- It must be so nice to get special treatment everywhere.
- Are you sure he has autism? He seems fine to me.
- God knew you could handle this.
- How dare your child not look at me when I’m talking to them!
- He can talk, he just doesn’t want to.
- If you knew she might meltdown why did you come here?
- Teaching him is like training a dog. How hard could it be?
- She can’t have autism; she looked me in the eye.
- I have a miracle cure for autism to tell you about.
- Disneyland would be much easier for you if you left him home with your mother.
- It’s good your baby is a girl so she won’t have autism like her brothers.
- There is nothing wrong with her. She is just quirky.
- You just need to force her to sit through it, she’ll learn.
- I gave up on him and stopped trying.
- Have you tried what Jenny McCarthy did?
- I can’t believe she isn’t potty trained already.
- Why aren’t they doing ______ yet? Have you been working with them?
- Isn’t she too old for a binkie?
- He is so spoiled.
- He can’t have autism, he is so smart.
- If you had enough faith in god, his autism would go away.
- She’s a girl, she can’t have autism.
- Did you know ______ causes autism? (Pollution, food, shots, microwaves, inbreeding, mean moms, drug addicted moms, power plants, loud talking, too much TV, etc.)
- Kids usually grow out of autism.
- They don’t need therapy because you’re such a good therapist.
- Good thing you’re done having kids. You wouldn’t want another one with autism.
- How dare you drug your child!
- But you’re so normal, how do you have a child with autism?
- Does the mean she is really good at ______? (Math, art, music, etc.)
- He just needs to be medicated.
- He doesn’t have autism, he has discipline problems.
- Could you please take your son out? He’s disturbing everyone.
- The way your house is in lock down is absurd.
- You should mortgage your home to try ________ therapy.
- They are in a normal classroom? Is that ok?
- You made up the autism diagnosis for attention.
- Make her come give me a hug.
- I can’t believe you won’t come to this crazy, busy, loud, sensory overload event. They would like it I promise.
- Everyone has some form of autism.
- Can’t you just control him?”
World Autism Day – April 2, 2012
How are YOU lighting it up blue?
Shine a light for Autism on Monday, April 2nd… any way you can.
Blue light bulbs are available at Home Depots across the country.
Wear blue to show your support.
1 in 88 children thank you…
Mine included.
Becki
** see more beautiful blue images from those participating from all across the globe on www.lightitupblue.org
Hey, Mom – What’s Wrong With Tony?
Another archive…
I believe this was written around 1998 by my oldest son, Michael, for a school project.
Quite insightful for an 8 year old.
“Hey, Mom – What’s Wrong With Tony?
My brother Tony and I are best friends. We share a bedroom where I read to him at night. Tony doesn’t like to sleep alone. He needs to snuggle and feel safe. My brother Tony is autistic.
When I was little, I used to ask my Mom why Tony wouldn’t play with me. I used to ask her why he wouldn’t talk to me. Now that I’m bigger, I understand.
He can do all the things I can, sometimes even better! All my friends think he’s funny. When we play football, Tony sometimes runs off the field with our ball. But that’s okay. Tony makes people laugh. We all call him “The Toneman”.
Sometimes, Tony can get very upset. It’s hard to calm him down. I don’t really know why he plugs his ears when we start a video, or why he needs to watch the credits over and over and over again. But that doesn’t matter because he can sing all the songs and even act like all the characters!
I used to ask my Mom why Tony couldn’t talk to me. She told me that all children are different and that Tony is still listening, he just answers in his head instead of with his voice.
My brother Tony can remember how to spell any word that he sees. I have to practice and practice! He also gets 100% on all his math tests and I’ve never seen him study! He is a wonderful painter, but can sort of make a mess when he’s creating something.
I can’t paint very well yet, but I’m really good at basketball. I guess we all have different talents. My Mom says that everyone has gifts hidden in their souls. Tony seems to really know his soul a lot.
Even though my brother Tony is autistic, I love him very much. And even though he doesn’t always answer my questions, I know he is listening. I know that because he gives me really big hugs. He’s my best friend.”
Siblings… always protective, genuinely inquisitive, patient beyond measure…and truly angels on earth.
Becki
Dedicated to Working Mom’s
I wrote this on a whim in 1994 and just found it while rummaging through some old papers. My how time has flown! My oldest was 4 yrs old, Tony was just 1 yr old, my youngest not even born yet… and I was a very young mother… I remember this so vividly and I’m so glad I wrote about what life was like with two small boys. Autism hadn’t shown it’s face yet — we had NO idea what was ahead of us. This was just a ‘day in the life of’ any working mom with small children. (Can I just say that we’ve come a long way with our nutritional choices since I wrote this? )
“Here is a run-down of a working Mom’s day:
At approximately 5:15am, little fingers are poking my eyes to say, “UP MAMA!” The day has officially begun. Pop in a video and slam a bowl of raisin bran. Make a small breakfast for the boys (usually a pop-tart and juice). Drink an herbal tea for health reasons, packed with caffeine.Wash hair, do face, get dressed, make beds, and catch the weather on the tube so I know how to dress the boys for the day. Make boy’s bed and chose appropriate clothes. Time is now 6:45am. Teach the boys good grooming habits by brushing each one’s teeth, washing face, wet “bed-head”, and comb into a nice, click wave and say “Who’s so handsome?” while smiling in the mirror. “ME AM!” is the answer. This way, they are in a nice, happy mood for the day. Time is now 7:00am. Put on jackets, grab briefcase, toys, juice, more pop-tarts, and anything else they decide is “necessary” to take to school that day. Off we go! Climb in the van and buckle up…. take a breather.
Drive to daycare (opposite direction from work, of course) and sing happy songs all the way. Try not to yell or swear at traffic, as the boys are taking mental notes that may effect them for the rest of their little lives. Unload at “school” and make sure each boy is happy and content with their separation (this could take anywhere from 2 minutes to an hour). Don’t forget to haul the car seats out of the van and leave in the daycare director’s office to Daddy can get them when he comes to pick up the boys at the end of the day. Drive to work – not forgetting to wave at the “Lollipop’s” window where Michael and all his little girlfriends are waving frantically. Drive is approximately 20 minutes.
Call Dave from car (this was fairly new in 1994 and I’m sure the phone was “plugged in”), try to relax, crank the tunes, try not to upset traffic. Finally arrive at work – collapse! Time is now 8:00am. Hectic day “begins”.
But not before my morning diet coke. Work happens for about 8.5 hours. Corporate B.S. … blah…blah..blah.. Dave calls about 5-6 times “just to say HI” … blah…blah…blah… Try to improve myself, but my mind still wanders and I’m thinking about little faces and wrestling matches between the boys. I miss the noise.
Work day is over! Time is now 5:00pm. YEAH!!! Drive home, clean up the toys from the rushed morning routine, attempt to cook dinner, return calls, change clothes, quietly await the arrival of my little “angels”. Loud noises from outside the door. THEY’RE HERE!!! Big hugs, long explanations of the day, wash dirty little faces and hands, break up wrestling matches, etc… Eat dinner. Take baths. Get jammies on. Outside activities if time permits. Time is now 8pm (hopefully not later). Family effort at picking up one last time, story time for both boys (at least 4 books) snuggles, kisses…. time to collapse in bed.
Say “HI” to Dave and have a jam packed conversation to catch up on the day’s activities (if he isn’t already snoring by this time). Lay in bed and think of everything that needs to be done. Catch the news and weather, if I can stay up that late. Doze.
…Hear tiny footsteps running from the hall. Tony is racing for our room, slams open the door, and “sneaks” into our bed, hiding under the covers. Mom can’t break his heart, so I put my arm around him and he falls into dreamland. (His older brother shortly follows)….. Alarm rings… ugh! It’s 3 or 4am.. Dave is getting up for work. … Try to fall back asleep… tiny little “alarm clocks” are poking me. It’s time to wake up because it’s 5:15am and a new day begins….”
Yikes.
I remember that so clearly. It was long before I found my perfect fit working from home. I tell ya, revisiting this, my heart goes out to all Moms — working outside or inside the home. It’s not an easy job! But the rewards are immense. Just remember this when times are tough:
It will hurt.
It will take time.
It will require willpower.
You will need to make good decisions.
It requires sacrifice.
There will be set backs.
But I promise you, when you look back,
It will all be worth it.
Becki
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