How Much Should Parents Sacrifice for Their Children with Autism?
My son was diagnosed ASD over a year ago, and I’m still actively turning myself into an Austism expert. I’ve read every book, contacted every organization, taught myself the therapies, we’ve tried the diets, supplements, medications, seen many doctors. And I hired the high-priced attorney to sit in on our IEP meeting and make sure my son got the best Public School program he could get - and I’m a single mom who makes $28,000 a year. What else could I possibly spend my money on?Granted that Kathryn's tone is a bit harsh, I think she raises an interesting and important point. What IS more important in your life than your child's well-being?I’m sorry, but anything less than that doesn’t just make you an “un-super mom,” it makes you a bad mother.
What on Earth is more important in your life than your child’s well-being? Get up off your butts and educate yourselves and save your children!
There are a few possible answers to that question.
Of course, the first, quickest answer is - NOTHING could be more important, and NOTHING is too much to sacrifice for my child with autism.
But I'd ask readers to think further. What if a hypothetical parent with $28,000 a year in income and no other source of financial support pays a lawyer $10,000 to ensure her child what she feels is an ideal educational placement? And what if that parent has more than one child, a rent or mortgage to maintain, and a retirement to fund? And what if, in addition to the lawyer, the cost of private therapies, biomedical interventions and other supports runs another $15,000 per year, bringing the total to more than the parent's net income?
At what point is that parent entitled to stop accruing massive debt in favor of saving for, say, retirement and a second child's college degree? At what point is that parent allowed to take a weekend away - even if it costs a few hundred dollars? At what point is that parent's welfare - and the welfare of the parents' other children and loved ones - as important as the welfare of the child with autism?
I don't have an answer to that question. I've made my own decisions - including a choice to homeschool - based on my own personal situation and resources.
But I do believe that EVERY life is important - and that includes the life of the parents, siblings and grandparents of a child with autism. Of course, every family has a different set of resources, priorities and supports. At some point, though, every parent needs to consider the question - how much do we sacrifice for our child with autism?
Comments
That’s definitely a hard question. I would recommend 2 books that have nothing to do with Autism but may help in terms of decisions from an (1) an emotional perspective and (2) a money perspective: The fist book would be co-dependent no more by Melody Beattie. Not a great title but a great book. (2) Total Money Makeover by Dave Ramsey.
Also the mom should join an ASD or PDD-NOS support group online too to see what others are doing. I’d also recommend a sleep study and definitely the more speech therapy, etc. at a younger age the better. But, check out the sleeping issues. Good Luck
I have done a lot of things in my life that that I used to think gave me status (becoming an executive, getting a Masters degree, making money, winning awards, etc). I realize now that giving myself and all my resources to my son who has autism, has been far more difficult and yet more rewarding than anything else I could have dreamed of achieving. He gave me purpose when all I really had before, were things. Most people live an entire life with just things, a very few with purpose.
Parents response to autism in their family is as individual as each child’s level on the autism spectrum. Just as our children progress (or don’t) and react to certain therapies and teachers in an individual way, parents respond as their situations demand.
We need to be understanding and compassionate with each other instead of judgemental. We don’t want society to superficially judge our autistic children and we need to set good examples by not judging others.
We, Mommies (and Daddies), need to stick together.
I would counter with a more basic question: How much should parents sacrifice for their children? Autistic or not, all children deserve the same commitment from their parents, even if their actual needs are quite different.
(btw, I am the father of two teenage boys, one autistic one not.)
My lovely wife and I spend countless hours and most if not all of our extra resources helping our son with autism. It’s worth every ounce of it. But, I once heard Jim Ball, someone who had dedicated his life to working with children with autism say the following to a special Dad’s group in Dallas, TX: “Don’t let autism run your life.” I’m trying to add that to our equation as well. I’ve found we’ve actually become more effective for our son when we do take time out for ourselves.
A friend of mine is at the moment taking a counselling degree to enable her to counsel parents who have a child with a disability, primarily autism. As part of her degree she has been doing a great deal of reading and was given a piece of research to read which suggests that the disabled children who do best in life, are those who are brought up within a family who accept that their child has a disability make the necessary modifications that are required to their life, and then go about getting on with their lives.
My own take on this is that parents who become consumed with the fact that their child is disabled may actually be adding to their disability. (Maybe I should run for cover at this point) Yes I set about becoming as big an expert as I could where my sons and autism was concerned, but I could also see that there were so many branches to this tree that I could easily become confused. Another good friend of mine, who also heads an autism research unit here in the UK, gave me perhaps the best piece of advice that anyone could have given me just after my two were diagnosed. His advice was not to rush into any therapy or intervention. Take the time to learn about your child first and then see what you feel will be best for them. I do know some parents who have literally poured their money down the drain while trying to get the best of everything that is out there. My own intervention came pretty cheap in the shape of home education and we have seen some wonderful results with this.
As a result of home ed we now have a circle of friends who have neuro-typical children as well as friends who have autistic children. I may run an autism support group but have not forgotten that there is life outside of autism. I am something of an oddity in our house as I do not make a BIG effort to be the Mom that my two autistic sons would like me to be. I do not fit the image of what a Mom should be in their eyes and mind set – but do you know something my sons now accept me the way I am warts and all. They find my peculiarities endearing to them and have said as much. OK I am a little strange in their eyes but we have managed to merge our two worlds without the collision.
Of course parents have to take care of themselves first. Since the waiting lists for group homes is in the 1000s in many counties, and many autistic children don’t *have* siblings, there is no choice but to do that. Putting money into retirement or buying health insurance is imperative. Not that anyone making $28K will ever be able to retire….
To that end, your hypothetical is a bit incredible. A person making $28K a year has no business paying $10K to hire a lawyer to go to an **IEP meeting**, instead of an advocate who probably knows 100 times more than a *lawyer* about IDEA. Due Process, yeah. But an IEP meeting??? Truthfully, lawyers do more damage than good in IEP meetings, because most of them don’t know IDEA from Adam.
Whoever suggested online support groups has the right idea. The networking is invaluable, it’s like the homeschooling community – each parent specializes in one thing, and you share the wealth.
There is no reason to throw money into the trash can because others who can do. Just because something costs a lot doesn’t mean it is right, good, or that it is good for your kid. That includes things like commercialized DAN sponsored supplements and the like. If a parent has the money to spend on that stuff, great. If not, they should not feel guilty. There are plenty of other things you Can do.
The protocols are most times a mixture of vitamins etc. that you can do yourself – don’t let them sell you on “oh but it’s better if they come from here.” (and I’ve got a bridge I can sell you….) Nutritionists know all about that stuff.
And college? NT siblings can go out and work for their college money – that includes doing well in school and finding every scholarship they can find. They are blessed with the ability to be able to even GO to college. No one is entitled to that! And I bet they come away from college with a bigger appreciation.
I can relate to Kathryn. Since the psychologist pinned the scarlet “A” on my son’s shirt about a year and a half ago, I have immersed myself in everything “Autism.” I too have read dozens of books, watched every relevant DVD and VHS tape on the market, visited thousands of websites, and talked with countless professionals, legislative officials, and other parents to educate myself on how to provide the best support and services for my son. So my son could get the behavioral therapy he needs, I became trained by a Board Certified Behavior Analyst and along with my son’s mother, we personally do forty to fifty hours of ABA therapy per week. As for special diets, my son is on the Body Ecology Diet (BED), GF/CF/SF Diet, and a modified version of the Specific Carbohydrate Diet (SCD). He only eats hormone-free, antibiotic-free, and grain-fed meats with organic fruits and vegetables. Also, he takes numerous vitamins, minerals, supplements, and prescription medications (mostly for malabsorbtion of essential vitamins and minerals, gastrointestinal issues, and detoxification purposes). Education wise, we moved 300 miles to a small town in the middle of nowhere to get my son into the public school with the best ABA and inclusion program in our state. I have quite literally gone to war with superintendents of school districts, principals, school officials, teachers, child advocates, and therapists to get my son a rotation of personal ABA-trained shadows, supervision by BCBAs, and 50% inclusion in a typical kindergarten class. And debt? I am so deep in debt, I only put one leg in the car when I start the engine because I’m afraid the hitmen are going to blow me to Kingdom Come (you think I’m kidding?). When I’m not working twelve hours a day to keep the electricity and water on, performing discrete trials at the table, or drinking a gallon of coffee to stay awake, I spend every available second playing with my son. We go to playgrounds, zoos, museums, waterparks, the beach, and over to friend’s houses for socialization. (Luckily, I’m a healthy twenty-eight-year-old who works from home and only has one child, so these factors do play a part in how I can provide for my son.)
After reading the preceding paragraph, some may say autism “consumes” my life. On the flip-side, others may label me as “codependent.” If so, in my opinion, you would be wrong. Autism nor dependence upon my son consumes my life. Love, on the other hand, does consume my life. Love for my God; love for my son; love for family members, friends, acquaintances, and everyone else in the world; and, last but not least, love for myself. (And while others may question what “love” actually is, I’ll leave that to your own interpretations.) Based on the ethics I’ve pledged for my life, which may differ from your own, I feel it is my responsibility, duty, and obligation to provide my son, as I see fit, with every opportunity for a better life. If I have to do without to provide that for him, so be it. If my son and I were starving and I only had one morsel of bread, you better believe he would get it. Is this codependence? To put my son’s well-being before my own? To feel good about the fact I can endure the suffering instead of my son? You be the judge.
Have the sacrifices in my family been worth it? When my son was diagnosed with moderate to severe Autistic Disorder at the age of four, he had no functional form of communication, was terrified to go around other people, watched movie logos flash on the TV screen thousands of times in a row, squinted with an askew glance and framed everything with his hands, had horrible auditory hypersensitivities, always carried a stim toy, and wouldn’t go into public without screaming to the top of his lungs. Now at the age of five and a half, he can vocally mand for (request) hundreds of reinforcers; tact (label) thousands of objects, actions, people, and places; has a massive receptive, intraverbal, and echoic repetoire; and has incredible imaginative play skills. Earlier this month, he began to mand for information (such as “Where’s Daddy?”). Not only is he doing well in a typical kindergarten class, but he has a girlfriend whom he plays with appropriately and sometimes tries to kiss (Mr. Casanova). According to the professionals, he’s made about three years worth of development in the past year. What made the difference? Was it some magic bean or miracle cure? Not quite. It was HARD WORK! Not just hard work on my part, but especially hard work from my son. He has worked his butt off to catch up developmentally with his typical peers. Is he “cured or “recovered” from autism? Nope. Do I want him cured or recovered from autism? Well, it’s according to your definition of cured and recovered. If being cured or recovered means he’ll lose that special “autistic” side of his personality that makes him unique and gives him a perception of reality that us mere neurotypicals couldn’t begin to fathom, then I’ll respectfully decline.
Do I believe you’re a “bad parent” if you don’t do the same for your child? I think that’s an arrogant and preposterous exhibit of all-or-nothing thinking. We all possess different circumstances, abilities, and responsibilities that can either hinder or catapult us towards our parenting goals. After all, parenting is not a one-size-fits-all deal. Often there are many roads to the same destination. And most of us will probably never exceed our own expectations. In fact, while I try my hardest to be “Super-Dad,” many times I feel like Clark Kent hiding in a rented Superman costume.
Each parent has to answer the “how much should I sacrifice for my child with autism” question for themselves. As for me, I would sacrifice everything for my child. However, if you’re doing the best you can do given your circumstances, then hold your head high and feel proud of your accomplishments. You truly are a “Super Parent.”
We are engaged, we are communicating, we are reaching out, we are all learning, we are doing the best we can and sitting in judgement of one another serves no good purpose except to divide.
Everyone is different, with different skills and abilities, different finances, differing family dynamics, different ways of understanding what all the findings are to date about autism and the spectrum.
I’m more about finding a group of people who want to discuss what has worked for them in a given situation in a supportive setting. I’ve done all the research stuff too. All the stuff out there about what causes autism and what people thinks cures it. Did you know there are support groups of autistic people who truly believe that they are the next link in evolution?
I’m more concerned about living with it, embracing my son for the wonderful person he is and helping him cope in this world. Just as I am about my other son, they will just be learning it differently…to the tune of their own drummer, if you will.
I trust my son’s neurodevelopmentalist (who is an awesome doctor) to alert me when there is a “cure”. In the meantime, my youngest is a chatter box and helps with big brother’s speech lessons!!! I AM BLESSED!
Peace.
If you know of a group of supportive people on the internet please email me at canvasgrey@hotmail.com.
http://www.thecanvasgrey.wordpress.com
I don’t believe that it is the amount of money you spend on your child that makes you a good parent. I believe that it is the amount of time and effort you invest in them. And, the harsh reality is that sometimes all the money in the world has little to no effect on the child’s progress. A friend of mine has invested millions of dollars in her son’s autism treatments since his diagnosis at the age of three. Now a grown adult, his progress has only brought him to about the level of a 4 to 5 year old. Which is INCREDIBLE, but he still will never live on his own, probably never hold a job more fulfilling than licking envelopes, etc. I am not saying this is always so, but the point is money is not a guarentee for any child’s cure-though yes it CAN help. It also does not determine how good of a parent one is to their child.
Personally, my family has sacrificed so much financially… but we stop short of not being able to pay our mortgage, utilities and groceries. After all, we ALL have to survive.
What we HAVE given up are vacations, eating out, luxury purchases or the occasional new car (cars are driven until un-driveable).
Erik
I often wonder,”How much is too much”. I’ve yet to find an answer to that question. I’ve been dealing with autism for the past 11 years. The past three years have been the toughest. My son dealing with puberty and me dealing with breast cancer. For a long time, I lived and breathed autism. My husband chose to avoid the entire situation and just live his life.
However, I do agree that it’s important to take time for yourself. I’ve put my life on hold basically to deal with my son’s autism. I’ve come to realize that this is not the best way to go. I would like to take time to take care of myself, perhaps take a vacation. Somehow I can never find that time. I don’t think alot of people realize the support that us parents need. Often I find that people stay away when you have an autistic child. Rather than offer assistance, they prefer to criticize. It seems the only people who get it are those in similar situations, and that’s a shame. I pray everyday that they will find a cure for autism. Lord knows, it is long overdue.
Our family has done both…when our daughter was first diagnosed, we studied and spent $ on every kind of treatment, went to every doctor, and looking back I feel that was part of the grieving process. Our anger and fear motivate us to learn everything and find those things that work. We feel like we are doing something in behalf of our daughter and it makes US feel better. Doing all of that also helped us see what we could not change; it gave us the wisdom to know the difference. Many things helped her. Many did not, and were obviously just us working out our grief trying to come to terms with the fact that she would never have OUR life or be CURED.
Now I have a different outlook. If we had it to do over, I guess there would be a degree of searching because it served a purpose. But I would shorten the process. I missed her childhood and our older daughter’s childhood. I never got to enjoy motherhood. Many of the stresses brought upon our family were instigated by me, insisting that everyone be on this tunnel visioned “mission.” I realize now why our daughter really liked it when dad came home. He played on the floor and wrestled and enjoyed her. I was out campaigning and studying and fighting and preparing for battle with anyone who dared get in my way. And the grief and stress and agony and fear and distress was obvious to my daughter, who I am sure felt horrible at this big problem she was causing. Only she wasn’t the cause of the problem. I was. Hyperfocusing on one family member to the exclusion of others is not fair. If mom is the tree and kids are the branches, what happens if the tree is unhealthy or dies? A psychologist friend pointed out that she had seen many parents die a very young death, and the child lived happily in their group home for many years after. But the parents never got to enjoy their child.
Now I thoroughly enjoy autism! I no longer try to get her to have my life. And I spend more time with daughter #2 and my husband and doing things I like. And I work as a life coach helping moms like me to have a life. I no longer communicate to my child that something is WRONG with her, that she needs to be FIXED. I don’t see her as deficient in any way. She has her life and her enjoyments and hobbies and is happy. I no longer insist that she subscribe to my version of happiness or the kind of life I had wanted for her before she was born. And she has continued to progress beautifully by just being part of a family, taking part in the give and take of it all. We have not stopped learning or trying new things to help her, but we don’t focus exclusively on that. And of course her health is something that continues to be a priority. But now we have balance and far less stress. We continue to work off the debt of that spending frenzy. I don’t know if we will ever own a home. One thing I do know for sure. Parents of special needs kids have an intuition that will guide them into what is right for THEM and they should follow according to their own particular circumstances.
WOW. Were to start? First educate yourself on Autism. Medically and Educationally. You have to know what you are up against. Then do soul searching. What is important in your life? Family? Work? Money? Sure, all of these things are desirable. Life can change and you find a new set of values.
Autism is a spectrum disorder. Being parents that have a child with autism, we believe we fall on a certain spectrum of parenting a child with autism. Where will the parents fall on the parental spectrum of Autism. Low functioning parent? High functioning parent? Loving parent? Cold hearted parent? Get the picture? What is right for one parent is not right for the next? Some parents immediately institutionalize their child if diagnosed with Autism. We don’t feel that way.
Our son has severe Autism, is sixteen, and we will be here for him till death do us apart or till we can no longer meet his needs. This is how we have
always felt. We plan on doing this as long as everyone is getting their needs met. Our son communicates but doesn’t speak. He expresses wants and needs and loves hiking, riding ATVs, Swimming, riding a tandem bicycle and eating and enjoys his educators. He is very happy most of the time.
We were told he would go into an institute at 5, then 11, then 16 or sooner or later. We had a pediatrician try to arrange putting him in a Group HOME. We said no and fired the pediatrician. “Put him in a HOME,” was what the pediatrician would have done to his child. Not us. The school district at a due process proposed residential institutionalization. We said no and fought a powerful school district. (Several times). Very difficult job.
We settled for a very good private “Autism Service Center”. The center is one of the best in the nation. This last time we did not have an attorney. I don’t advise this unless you are very knowledgeable about special education law. 13 years ago I knew nothing about autism or Spec. Ed. In the past 13 years I have used a dozen attorneys, some good, some not so good, I believe a couple were bought out from under me by the district. Some were pro-bono, some of them the free agency type. We have used Advocates also. This last time my wife and I did it ourselves after our years of training from all of the above. Without the years of training we could not have done this. It is too hard for a typical family and too costly. The reason we speak so much about GOOD EDUCATION is this is what helps keep the child in YOUR home, in YOUR family along with PROGRESIVE medical treatment. A child with Progressive medical treatment looks a lot less Autistic. A child with Appropriate Education looks a lot Autistic. The child is happier, healthier, and smarter and so is the family. I have a typical 18 year old son that we advocate for to. He is so called normal. I haven’t ever made over $30,000 a year and hardly make over $25,000. There are grants for help for autism education and medical treatment and advocacy out there. It is a lot work accessing needed services. This is necessary to keep your child in your home. Our dreams used to be different. We are happy being together. We try to stay healthy and enjoy being ordinary average Americans. I consider us poor financially but rich in family values. We all have problems here and there but through the blood, sweat and tears we are making it when no one said we would. Even our families, parents, brothers and sisters had their dreams for us, and said to give up. We are living OUR DREAMS. This is only our story and is not right for everyone. We just want to give the parents out there the HOPE and know possibilities that NO ONE gave us. We have a severe can-do attitude. Don’t take NO for an answer if your heart tells you different. You can do it. That is were our success comes from.
my son’s autism has been the most rewarding THING that has ever happened to me and my family also. I am so thankful for him and his unique qualities. Yes he has severe autism. He has saved my life. His puberty was real hard. There is light at the the end of it though. My son and our family survived his puberty. He is now 16 yrs old, stadge 5 puberty and he has leveled out finally. Marc’s statement above is how I feel. Rana’s statement is so true also. “Don’t be so quick to judge others”. Walk a mile in our shoes. Wesley says “to take out time for yourself. This is so true also”. Christopher’s statements above seem like mine. For the most part my son’s autism has been a turn in life that has helped me. Maybe even saved my life. It can be consuming and is consuming. I take to the challenge. Maggie, you hang in there. When my son was 11 i was wondering if we were going to make it. At the end of the day (when there is a end of theday, Sometimes they blend together) when you do lay your head down you know and can rest assurred you gave all you could and a person can be at piece with that. God Bless you. A unmotivated parent would have given up! Autism gives a parent fire. After the anger, grief, Sorrow, pity and many other feelings, strong advocates and powerful parents are born. Kerry, i feel your statements too. I enjoy my son’s autism too. That is what makes him so special. Yes I am poor financially. You can’t take the money to the grave. My son does not speak for the most part and we have to clean shit off the floor sometimes and he is a very messy eater and does not like to wear clothes, except shorts if I’m lucky. When i get a smile or hug i melt. I thank GOD every day for my son. Keep up the good work soldiers.
Hi, I also have a son with autism he will be 34 this Dec. I was a single mother and very low income, I was able to keep my son home with me till he was 26 and would have kept yet with me forever if i could have he is my pride and joy god gave him to me to make me a stronger person, the best you can do is give them your love and support take a day and teach them as you would any child you will be amazed at what you can learn from them!!!1
Hello, to those of you who have an autistic child, ours is 25. Shes severly autistic and profound. We love her so much, but thru the years, its gotten worse. She bites her hands and arms, and hits the top of her head. she cant speak and still wears diapers. shes 4ft and 10inches tall, and small for her age. Life can be very hectic with her, but she can love on me and her dad. which shes a daddys girl anyway. God is who we trust to help us with our sanity. There hasnt been anything we can do for her. diet, programs, tools of any kind. She just exists. We wouldnt trade her for the world. I also have a dissabled 27 year old son. Hes mildly mentally handicapped. He can dress himself, and works a two day a week job, and goes to tech school for the dissabled, our daughter is in the day care side of the same building. we also have two other daughters, older and younger, and both have children. the youngest has two, and her 2 year old little boy, is dissabled. Hes not been labeled, but I believe he has autism. just from watching him. My grandchildren helps me to keep humble. I couldnt see our family without any of them. God is faithful.
I am the older sibling of a brother who is profoundly deaf which is an invisible disablity at first and a communication disability like autism. Our parents where determined that he would learn to lipread and talk rather than use sign language and deaf culture. This oral training requires enormous family sacrifice to teach communication skills. Our dad had a demanding job so our mother provided most of the care and training. Deaf children do not sleep and wander the house at night. Our mother ruined her health caring for him. I was a child who could hear so I was a victim. As a child I had no choice in how many family resources were devoted to my brother. Parents would say to me,Why don’t you go watch TV? Can’t you see we have our hands full with your brother?” He learned to lipread & talk. He has a masters degree, a hearing family, and has a paycheck better than mine. He continued to live close to our parents while I moved away. But after our father died & our mother became elderly & disabled, He decided to move to a foreign country for several years. All that sacrifice for my brother went wrong somehow. I cared for our mother until she died seven years ago today. I became codependent & have an unhappy life. Mother’s will divided the inheritance 50/50, when that was not right. I had mother with me for years. I had the executor responsibility. Brother lived with parents until age 25, I was independent by age 21. Brother had expensive private schooling (& transportation) from preschool through high school, where my education was free & I walked to school. I never want to see him again in my life. He is not able to consider other people’s feelings–only his own. That self centeredness is a greater disability than the deafness.
Hello. I think you are eactly thinking like Sukrat. I really loved the post.