Wednesday, April 02, 2008
What does it mean to raise a child with autism?

A real community has developed around the issue of autism on iReport.com, and we've received more than 300 submissions on the topic! I spoke with a few parents of children with autism, and they are some of the kindest, most inspirational people I have ever encountered; people who, despite the challenges, understand that their children are capable of great things.

 

These parents have embraced their children for the unique and wonderful people they are. In the process, they have experienced a range of emotions and interactions they never even knew existed. They are truly amazing. We invite you to explore these parents' stories, and contribute to the conversation .

24 Comments
April 2, 2008
Click to view GeeGee's profile

I'm honored that God has allowed me the opportunity to mother my 5 yr old autistic child. I thank him every day for sending one of his angels down to teach me the true meaning of love and friendship.

April 2, 2008
Click to view Calebsmommy's profile

It's hard as a single mother, I have no support from my son's father..  I was depressed for a long time, because I blame myself for my son autism, even through I was doing everything right before, during and after he was born... But through prayers of family and friends I've been able to overcome my depression and focus on my son getting better.

April 2, 2008
Click to view GeeGee's profile

sister keep your head up without u and your health u can't help him.

April 2, 2008
Click to view Sylvia8's profile

I am a single mother and have two biological sons who are over 30 years. In 1992,I adopted my young son thru an independent adoption. I met his mother who told me she had no means to care for him and accepted that I adopt her child. He came to my life when he was two days old.My life seem bright and full of future hopes for my new son and I.

He was in perfect health according to the hospital. Before his first year he began having chronic asthma and many problems with his stomach. I returned to work when he was one year old. By this time, I had not observed any significant problems to worry about.

He walked at 18 months and said his first word at 18 months. He seemed to be a happy child while attending Montessori school and day care. His problems began after he finished 1st grade. In second grade, he attended a public school and began having problems with other boys in his class room. Every day he was bullied and was in trouble. The class peers hit him during school breaks and after lunch, he was also tortured in the sand box. He would come home with sand all over specially his head. One day he came home with his glasses broken and he would not say what happend. The kids used him as a punching bag, called him a bad boy and one boy who always said he wanted to kill him.

I went to his teacher but she said that no teacher supervising the playground saw anything. The bullied continue and the girls in his class began to talk to me. One day they saw four students from their class jumping on his stomach during a lunch break. The teacher told me the she felt my son had a some kind of retardation because during class time he would not listen and he seemed to be in another world. I took my son to a neurologist and at that time I found out that my son had petite seizures and that he needed medication.

Before the year was over one day my son came home and told me that he wanted to take his life. He said "I am a bad boy and I can never be a good one". That was the begining of his therapy to help him with cope with his emotional problem. I went back to school spoke to the school principal to make sure that the next year the boys who bulllied him, hit him would not be in the same class with my son. That was done but the torture continue during his breaks and lunch. My son was sent to a first grade class room during his lunch to help children with their reading. The first year that he went to public school, I lost my job and things were very difficult at home. I spend alot of time with my son getting to know him. I cried every night feeling incapable of helping him. I had no money to put him in private school and he was forced to stay in the public school. By the time we went to the fifth grade he broke down. He could not study, do home work and he could only print. His teachers expected alot from him and now he was too slow to do the work and his grades were below average. My tears and prayers were my only consolation I could not do much for him. I had no idea how to fight the system. I din't know enyone who could tell me about special education.

I temporary moved to another distric because I found a partime job. When I met my new employer who was a psycologist, she observed my son for about thirty minutes and then she said "your son is autistic". He has asperger's syndrom. She gave me some literature so that I could read about asperger's. I then began to see things that I had observed in my son as I was reading the literature. The new school district tested my son and they found him severely emotionaly disturved. He was placed in special education setting with other children who were high funtioning.Thank God! I found a true friend who has helped understand my son. Also, she has given me guides to fight for him.

My son is almost sixteen and he has continue in special education but has four regular classes. He is doing great in school but at home his self help skills need attention all the time. He is always by himself and seems depress for not being being able to make friends.

His has fine motor problems, epilepsy, very bad sight,petit mal seizures,asthma, autism and some schizophrenia. Now he is receiving individual and group therapy two times a per weak, one session per month with a psychiatrist, occupational therapy once a week.

I am sixty years old and suffer from fibromialgia,arthritis and spinal problems. I have come a long way in meeting my mission and that is to give my son every opportunity there is for him to become successful. There are many things that will never be normal but my love for him has kept me going.

My son wants to go to college after high school. He feels that in college the students won't make fun of him and that his learning experience would be wonderful. Maybe we can find a scholarship so that his dreams will come true for once in his life.

April 2, 2008
Click to view AisForAutism's profile

Show you care, be aware.

 

Joanna K-V

www.AisForAutism.net

http://www.aisforautism.net/videos

April 2, 2008
Click to view Melissa2008's profile

I am a single mother of three and my son has Autisim and he struggles every day in a public school.The other kids at school tease him and bully him and I don't live close to any kind of Autistic school or a treatment center that just focuses on Autisim. He has High Functioning Autisim. He has been bullied so much that he gets in trouble in his 4th hour class almost every day,I try to explain to the school that he can't help having tantrums, because he has a hard time handleing things that upset him. They told him and I that if he kept having tantrums and they can't handle him they were going to call the cops on him at school. This is not easy and I wish more people who don't have Autisim would want to learn and understand about this disorder.All I keep hearing from the school is it's just his behaivor. He is really a great blessing to me he makes me laugh and he also makes me cry with happieness when he does things on his own with out being reminded. This is a learining process and we are all learning. The kids are even learning everyday many new things about him at home and they are starting to understand a little better.

When he was an infant I noticed that he was not acting like all of the other children he would not make any type of noice of any kind. When he was a little older and finally able to crawel he wouldn't play with any of the other kids he would be in an area all by himself. I was getting pretty concerned. So I took him to the doctor and they told me the same thing they had told everyone else, that he was slower and that he would catch up soon. Well, he has not gotten any better. He has gone down hill and I am having a hard time getting him to understand things. I have tried many things with him and not very many things have worked. There are things that have worked, don't get me wrong he does make some progress some things are just harder than others. Many of the medicines have not helped him with some of the things that he does. So far we have found something to help with the outburts and the violent behaviors, but some days it looks like they aren't even helping him out even a little bit. Some day I have faith that they will know what chemicals in the brain are keeping them trapped in there own world.

April 2, 2008
Click to view CherylHunter's profile

My son will be fourteen on April 4th.  He was diagnosed as with Severe Autism at age two.  He is typical of any fourteen year old boy for the most part, but his social interaction skills and understanding of appropriate behavior and social norms remain at a toddler stage.  He will probably need assistance in everyday existence for the rest of his life...This scares me, I want to know that he will be taken care of after I die or am too elderly to provide for him.  The financial aspects are overwhelming, but there also needs to be consideration for the type of communities available.  I hope our next president will take this situation seriously and understand the magnitude of the problem as our current generation of children with Autism become adult and elderly.  We need a plan for community living for elderly adults and their Autistic children.  Communities which allow a decent quality of life while not placing a heavy burden on society.  Discussion needs to happen now.

April 2, 2008

I would like to know why my Profile has been removed from the Superstars at ireport.

 

shari.atukorala@yahoo.com

April 2, 2008
Click to view BeautifulBen's profile

I've been reading some of the blogs about the parents who noticed differences in their children pretty early. I noticed my son's fixations even before I returned to work when he was 6 weeks old. I went to daycare early with him every day to watch him with the other children when he started to toddle and he would have nothing to do with them. When I held him to my chest, he would curl his little body inward, tuck his little arms underneath his body and tense up when I tried to get him to put his arms around my neck. His first word spoken was "Thankyou" but that quickly dissapeared and he was silent. Several doctors told me what alot of you parents heard about him taking his time. I did'nt hear "mama" until he was 2. Benjamin never showed any real interest in toys, so when he did show interest in something, I used it as a tool to get a word by putting it out of his reach and telling him what word I wanted him to say before he could have it. He would get very upset or lose interest in the object, but I stayed persistent and it took a few weeks for him to spit that word out, but he did it!. One thing I contribute to my son's success he's had so far is that he sleeps in the bed with me because at first, he was so sickly. This is when I talk to him, sing to him and tell him how much I love him. All the lights off. No visual or verbal distractions. Just my voice. Sometimes mono tone, sometimes animated, every night then

I remind him to close his eyes and go to sleep and before I know it, he's out. He started his education in a Headstart program that had no experience with Autistic children and rather than deal with him, they would let him wonder the classroom and do his craft projects for him. I watched this go on because they had an observation room where I spent ALOT of time. Pre-k has been bumpy. I thought he would benefit from being in school for the full day and that was not the case. His behavior was so bad I cut him back to a half day which helped him in so many ways. He has just recently been able to communicate to me that he does'nt like his friends (classmates) and I think it has to do with the noise level. I've read alot of blogs lately from children and young adults with Autism and they are all pretty consistent with their feelings toward school. They don't like it. My son already tells me everyday he does'nt want to go and sometimes get's upset when I do take him. He used to ride the bus a very short distance to school and loved it, but then he did'nt want to ride anymore. He used to love to go to school and even wanted to go when he was pretty sick, but that has changed as well. For me, my opinion, if I deem it necessary, I will pull him from the public school system and home school. I like the school he attends and the teachers are great, but I have to do what's right by him. When he attended full day, he started to regress and stem alot and having terrible outbursts in class and at home. I will not put him through that again.

April 3, 2008
Click to view plemonsareus's profile

In the midst of all that is autism I would urge everyone to keep a journal on your child's progress and jot down anything and everything that is an improvement or a blessing.  These kids will surprise you over and over.  And somehow seeing it on paper gives you a way to be thankful. 

 

My son is on the mild-moderate on the autism CARRS scale, in special education services since the age of 2, speach was slow, more like pulling teeth, but beautiful.  Even at 4 he had a large vocabulary but hardly used much.  I longed for the time when he would come to me and holler "Hey mom, look what I did!"  I've got sweet video of both my kids having a puppet show in a card board box at age 6.  To show it on this site, I'd have to get it transfered to disc. Check out my site. 

 

I have had Sam in CDC special ed classrooms all his life, His schools used the pecs symbols and the TEACCH program when he was younger and now he uses a simple written schedule. I've learned so much from his teachers and now I've been so fortunate to be able to homeschool him.  His older sister is graduating from school this year and driving, which has given me a ton of freedom.  I almost think being autistic may be easier than aspergers.  Because it has helped my son stay in the CDC room where he could get individual attention, stay away from bullies, and have his goals met,  whereas asperger kids are often put in regular classrooms and expected to keep up.  It's not always meant to be, inclusion by force or "No child left behind" which is pretty much exactly that.

April 3, 2008
Click to view plemonsareus's profile

my heart goes out to the single moms with autism to deal with.  search for autism support groups, or just disabilities in general and try to make friends that you can see and have your child around weekly if possible.

 

  I felt like a single mom much of the time and still do, but without the financial burden, it's just that his dad is very busy with work all the time.  The younger years were the hardest, but don't give up hope. 

 

I used to send notes home with  my son's classmates like homeroom mom, just to get to meet them.  It's surprizing how hard it is to meet parents of special needs kids.  But I would find a few here and there, but I'm thrilled to say that now my son has had friends (aspergers boys) for 7 years now and our little foursome is tight we depend on each other and call almost daily.

April 4, 2008
Click to view CuringAutism's profile

Raising 2 sons now ages 13 and 11 with Autism and a twin relatively healthy daughter age 11 as a single mom, I face challenges on a daily basis including:

 

Challenges

1) Emotional – From an emotional standpoint, getting the news that your child has Autism, or any chronic medical condition could be equated to facing death. The ‘death’ I endured was that of a dream of healthy children along with the ‘death’ of my vision of a happy, ‘normal’, healthy family.  Although my children have made tremendous improvements over the last 10 years, I initially encountered shock facing the overwhelming reality of my situation with 2 boys both being placed on the Autistic Spectrum.  My sadness deepened as my bright, socially perceptive daughter, exhibited behavior that indicated she was troubled by the stress in the house and she too needed extra support and counseling.  In time I came to the realization that only unstoppable persistence, inner strength, unconditional love, an undying quest for knowledge, insurmountable patience, and outside support including a synergy of the best medical care in the world could potentially heal these seemly overwhelming issues with which my children and I were confronted. 

2) Physical – Over the course of 12 years the physical challenges I face include constant lifting, intense sleep deprivation for 9 years (due to night time wake-ups from chronic seizure disorders, croup attacks, asthma and allergy attacks), and assisting my kids with basic needs due to global developmental delays. Obviously the day-to-day strain confronted by parents of children with special needs, especially moms of Autistic kids, can be very draining! Lifting and carrying  kids is simply part of everyday life from early on due to developmental delays that prevent small children from crawling, walking, running, climbing or playing safely or age appropriately for many years or maybe ever.  Constant vigilance is critical to insure the safety of the child and anyone else with whom there is contact.

3) Spiritual – When Bad Thing Happen to Good People, by Harold Kushner is one of my favorite books that summarize for me the challenges to my thought process that occurred as I faced the concept of ‘Autism’ with my family.  Why did this terrible illness strike my children?  Why me?  What did my kids ever do to deserve this disease?  Why couldn’t they just been born healthy ‘regular’ kids?  Why am I here on earth at all?  Can I make it through, not just taking care of one child with ‘special needs’, but two or three?  Do I have the strength to do this job as a single mom?  Why don’t people understand what I’m going through? How can I show people a way to treat my kids with respect?  Will my kids ever say, “I Love You, Mom”? Will my kids always be in diapers?  Will I ever have a life of my own again?  Will they ever have independence…write their name, speak in full sentences, ride a bike, make friends, drive a car, go to college, live on their own, feel self confidence and the freedom of knowing they are productive, capable members of society?  These spiritual questions have continued to run through my mind for years while raising my beautiful, compassionate, loving, “special needs” kids on my own full-time as a single mom!

 

 

 

Gifts

1)       Persistence –This overwhelming and terrifying process of fighting for my children’s health has required constant optimism and perseverance. One of my lifelong best friends, Amy (who coincidentally has a daughter, Rachel, with special needs) always tells me, “That which doesn’t kill you makes you stronger!”  Facing the complex and extensive issues surrounding neurological, psychiatric and other medical issues has taught me that incredible strength can be obtained through overcoming adversity against tough odds.  My father, Psychiatrist in the Chicago suburbs for over 40 years, coaches me with the “Power of Positive Thinking” and P.M.A. (Positive Mental Attitude), to inspire insurmountable hope and optimism into me and my children for the brightest future possible.  My mom, teacher, Special Ed expert, and Guidance Counselor to 6th, 7th and 8th graders for over 30 sat through every meeting we had with the schools ensuring my boys would be provided the maximum available time with services, one-on-one aids, adaptive technology, and altered curriculum to make their experience at school a success for them, as she instilled in me the values of complete integrity and a tremendously consistent work ethic.  My sisters and brothers, along with many extended family members, friends, neighbors and community members offer constant support, encouragement and love all along the path of my family’s journey for a cure.  My beloved Grandmother (age 89) is a constant source of light with her wealth of knowledge, news articles, and resources for furthering our learning on all subjects related to our family’s healing and helping others in need.

2)       Perspective – As Oprah, one of my greatest mentors has taught me, “What I Know For Sure” is children and generally all people suffering from special needs or any stressful issues or situations in their lives can provide a unique perspective to others not having to deal with these problems on a daily basis.  I have developed incredible insight into what I am on earth to do with my life, immense gratitude for simply being alive to share my experience, strength and hope with others, appreciation  for the unconditional love that surrounds me, happiness in the simple abundance I enjoy, joy in the precious gifts of lifelong honest friendships,  thankfulness for my wonderfully loyal family, tremendous compassion and empathy toward others, a wealth of knowledge on many subjects, the gifts of miraculous children, hope for a bright future, and so much ability to help others in need from my personal experience of walking in so many shoes.

3)       Unconditional Love -- For optimal healing I have found it critical to maintain the ability to be a nonjudgmental, consistently unconditionally loving, totally accepting person.  My special, gifted kids have the ability to share themselves completely openly, honestly, freely, and lovingly without the “normal” barriers of being self-conscious or insecure.  Hugs, holding, frequent baths, splashing and simply allowing space to ‘run free’ have been crucial for them. 

 

 

 

 

 

Advice

A -- Autism and other related neurological and psychiatric disorders are all treatable, healable and may even be curable with the persistent pursuit of knowledge, unending patience, chronic unconditional unyielding love, and the creation of a synergy of positive influences, as Laura Day writes in her inspiring book, The Circle.

U -- Ultimately OPENMINEDNESS is the key to finding the right combination of therapies, vitamins, diet, exercise, medications, doctors, teachers, positive people (while eliminating negative people), friends, family and activities to enhance growth.  For me keeping an open mind has also proved important in terms of maintaining a good relationship with their father, who is with them whenever possible, and adds both emotional and financial support to their lives.

T – Together we can to what we could never do alone!  By joining support groups, working through our schools systems and communities, and communicating constantly via phone, fax, voice mail, Internet, Web sites, books, and seminars, we can keep the flow of information going between and among our special needs communities and our medical research staff, who are working 24 hours a day in hundreds of countries worldwide to help improve the lives of our children everyday.  Our goals are the same!  SYNERGY WILL EXPEDITE THE PROCESS!!! SYNERGY means 1+1 = 3. Working together for the same goal will allow for better results to be accomplished more efficiently, faster and optimally for all involved. 

I – I need time to myself!  Taking breaks from Autism or the “sickness” that infects the family with special needs issues is extremely important.  For the main caretaker to maintain good health and sanity, plans with friends, going to dinner and a movie, spa time, working out, reading a book, taking weekend vacations, and even finding a good therapist, can make all the difference in providing the entire family with a happy, loving, stable environment much of the time. 

S – Self-Esteem is critical to the growth and development of any child, but especially important to a kid who begins life with disadvantages.  Finding any hobby, interest, educational achievement, physical accomplishment or spiritual development should always be nurtured, totally encouraged, and rewarded -- no matter how small or seemingly insignificant.  Each positive stepping stone leads a child down the road for future self-esteem on which to build a foundation of a healthy and more “normal” future.  With even one simple skill a person can gain the feeling of accomplishment, paving the way to happiness in any other aspect of life.  

M – Mom’s generally in our society bare the burden of caring for the kids with special needs and adult children with disabilities today.  As a single mom the most important advice I can give to others is to learn from the ‘voices of experience’ from famous world leaders and thinkers, and try to emulate them on a daily basis.  I live my life with my children by spending as much ‘quality time’ or one-on-one time with them as possible, keeping in mind that the world does not and may never accept nor understand them the way that I do.  Our family tries to live by example for optimal healing of mind, body, and spirit with integrity, hard work, balance, lots of laughter, multi-tasking, constant continuing education, proper diet, exercise, fresh air, vitamins, the minimal amount of medication necessary as prescribed by doctors, a synergy of positive influences, appreciation for nature, time together for games, the arts, music, prayer, meditation, and lots of water for drinking, bathing and swimming!

April 15, 2008
Click to view dinoMom's profile

TOO MUCH FOCUS IN GENERAL ON LITTLE KIDS AND A CURE--NOT ENOUGH ON HOW TO ADJUST AS THEY GET PAST PRESCHOOL ...

They should get rid of the IQ tests for autistic children. I recently went through that with my son, and pretty much had to sign the consent to cooperate with them and my husband. The schools can do this without my consent, anyway, if they can couch it in terms of somehow benefiting the child. i have always been willing to let them adapt the environment or curriculum to my child, or place him, as long as there are typically developing children around as "buddies", or to play with him. He does need to be exposed to role models, whenever reasonable. Why they needed a marginalizing IQ test to prove that they weren't to blame for his lack of progress, I will never understand. I do NOT believe that they are to blame, anyway-maybe he will get the math taught in a more applied manner (which I know is a change in expectations, but gosh, whatever helps...). My son came home saying "sorry" for days. He has been bursting into tears randomly, and has completely quit using the toilet, as well as echoing from his classroom three years ago where things were more encouraging. My heart is breaking, for him. He is definitely not too stupid to know what just happened to him, even if he has great difficulty with math and writing. He reads the emotional response of others quite well. I don't understand why these decisions on  placement have to done only on a yearly basis, IF where he is actually is not appropriate, and why parents cannot be fully informed about what their available placement options are. Maybe the IEP goals just needed adjustment. I managed to find out that they  would place him in another autism classroom next year, but I am terrified of not knowing, once again, what questions I am supposed to be asking. Sure, he gets the standard therapies. I am grateful for that, but I am still worried ... that I did not act in the right way as his advocate. We cannot afford  a lawyer. What I find so incredibly distressing is the blaming comments that have been made towards me over the years by a few people who worked with him in school. Sometimes, things will only get so much better, no matter how hard people try, and it does no good to attack Mom. I've only experience a timy amount of what women in my mother's generation went through, though. It is a sick feeling.

April 19, 2008
Click to view Ryn's profile
Ryn

Sometimes you feel as if you are the only family out there living with autism.

The Autism Awareness Day on CNN and all of the ireports have truly been a blessing. We have the greatest kids and the worlds best families .

Thanks to everyone who sent in a report!

And THANK-YOU  CNN!!

April 22, 2008
Click to view lazaro's profile

I've been thinking lately about Cubans coming to the US by boat crossing the Straight of Florida.I see how every month hundreds of Cubans land in our shores easily ,and I came to the following conclusion. As we have an embargo for almost 50 years against Cuba, it will be so easy for terrorists to fly to Cuba ,and as Cuba is a very poor country, they can easily find ways to get explosives, or terrorists can easily pay a huge amount of money to some of those Cuban guys who sail down to Cuba,and bring them right to our shores with Cuban papers or whatever.They can be easily trained to do so.And the policy that we keep against Cuba may backfire on us in a very dangerous way,and I don't think the Cuban government would have any involment at all.They have always tried to make friendship with the US,but we have failed to aprove it .I think that the Wet Foot ,Dry Foot policy is putting us in a lot of danger,as well as the Cuban Adjustment Act.Cubans who come today are not the same as the Cubans who came in the 60's,they are coming for economic reasons ,not political.America is in an international  situation that we can not afford to have any enemy at any of our borders. Hope you understand,and make some of our senators see that it is time to put an end to all of these.We can Not listen to the Cuban exiles,they can bring a lot of problems,and they have a lot of hate for the past.Thank you very much!

July 10, 2008
Click to view freestuff's profile

I am so confused. With today's technolege, we went to the moon. But we still cannot heal so many human health problems.

-

http://cell-phones.equidation.com

December 4, 2009
Click to view caiwei's profile
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