How Can I Overcome My Grief and Anger About My Child's Autism?
Monday November 27, 2006
You pass a ball field and catch a glimpse of a soccer game. You see a sign for the local school's winter concert. Or -- worse -- you have to listen to a proud Dad brag of his son's Little League prowess. The most ordinary daily events can set off a cycle of frustration and anger -- and a sense of injustice.
While other parents just enjoy their kids' achievement, you wonder if your five year old will ever be diaper trained... whether your ten year old will master basic language skills... whether your teen will have what it takes to live independently.
For many parents, the grief and anger over having a child with autism doesn't fade or disappear quickly. With each new milestone, it can resurface. Drs. Robert Naseef and Cindy Ariel have a son with severe autism, and offer personal insights and advice to help parents regain a sense of joy in what life now has to offer.
What do you do when that sense of anger and injustice hits? Is there a person, place or activity that helps you through the bad moments? Share your thoughts on the blog!
Comments
Hi, Lisa,
I can’t say I’ll ever be able to truly understand the feelings of the parents of an autistic child but I’ll never forget what a wonderful time I had playing with Tommy a few years ago at G&M’s front yard. He made it a happy day for me. He may not even remember me but I cherish that memory.
Kaiser.
I have actually been having a bad time recently dealing with my grief and anger. Like many experts warn, these feelings tend to come and go.
There were times I when I was much better at taking my son’s problems in stride. But now, perhaps because he’s just turned 13, I’m ruminating about Jalen’s problems more often than I care to admit.
My son Logan, who is two years older, is a very gifted child academically, and socially. He is sensitive, insightful and in tune with others. He excells in language arts, math, science, social studies, and music. He has this wonderful spirit that everyone loves — but is never arrogant or boastful.
I know it’s doesn’t do any good, but sometimes I find myself thinking how unfair it is that Jalen struggles to do things Logan could do at two! Then of course there’s the guilt….
So what do I do? First I remind myself of the things I love about Jalen — his beautiful smile, his silly attempts at humor, his hugs.
It also helps to talk with my husband. His calm acceptance of reality inspires me.
Cynthia
I HAVE A 5 YEAR OLD BOY NAMED RICKY WITH AUTISIM. I HAVE TO SAY THAT I AGREE WITH EVERYTHING THAT CYNTHIA, THE ABOVE READER, WROTE. IT SOUNDS LIKE SHE AND I HAVE ALOT IN COMMON. OUR STORIES ARE PRETTY WELL THE SAME AND I COULDNT OF GIVEN ADVICE ANY BETTER THAN THAT.
My daughter, Sarah, was developing normally until a few weeks after the MMR vacine that is mandatory by LAW. She went from bright & inquisitive to almost a zombie. Of course our federal govt. says there is no empirical evidence to link autism to the vacine. All one needs to do is compare the symptoms of mercury poisoning to autism to see how very similar they are! Anyway she is now ( and “profoundly” autistic; still not verbal & not potty trained. The anger is sometimes close to overwhelming, some days worse than others, some days not a problem. I concentrate on how much we love our little girl and ask God to help me do something positive instead of the helpless negativity of anger. It goes away shortly, but it is always just below the surface. Did you know the veterinary industry outlawed thimerisol in ANIMAL vaccines in 1981? We STILL give it to children unless the vaccine is marked “pediatric dose - no thimerisol” Does America care more for pets than our children?
My grief and anger comes and goes every single day. One moment I am fine, singing with the radio, and the next, I see something that reminds me, or I think of the ongoing struggles to secure services, and the financial strain that is ongoing, and I feel anger and nauseated from head to toe.
The things that help me are to surround myself with positive influences. I journal my thoughts, I read inspirational things so that I have that to pull from when these moments of grief hit. And I pray for guidance and strength every single day. This may not be for everyone, but it definitely works for me.
Caring and living with my son Alek, a seven year old child with autism, involves extreme effort, consistency, discipline, and energy, as we give the most we can from ourselves in our attempt to educate and raise a happy individual, hopefully capable of growing to become one day an independent and productive human being…. Of course, the anger and fear are real and powerful feelings that always manage to resurface at different moments in our lives…. sometimes predictable…sometimes not. However, living with him has brought, and continues to bring so much joy, light, and inspiration to our lives. Sometimes, just a glimpse at my child’s smile, unconditional love, and inability to lie, are just what I need to find a sense of relief and comfort while striving to live in our world, contaminated by war, injustice, and chaos. They are pure souls, and I truly believe any person touched by then can “preview” a “glimpse” of Heaven!!!
My son is 17 people! when he was young…and I was young…I was a mess. I hated everyone with a normal child. That is a real hard place to be . I can’t stress enough these important things.
1. Surround yourself with supportive people. If people are negative to you or your child…stay away (short version!)
2. Realize your energy level. That directly affects your patience level.Don’t take your anger out on your child.
3. Get enough sleep and rest…even if your kid doesn’t. Use your respite to sleep if you can. You can get really nutty without your rest.
4. don’t ever blame yourself for your childs autism
5. Educate yourself on the subject of Autism and learn to be a strong adocate for yourself and if you do there will a surprise for you in the end of it all…you will become more assertive in your whole world. No more fretting about returning things to the store without a reciept!
6. Stay close with your partner…nuture your relationship. Try to blend ideas together and understand your different roles in this childs life.
7. Ask for what you need, if its child care to a back rub…ASK somebody!
8. You are not alone so don’t try to be stoic. Get out and socialize…it is more important now than ever.
8. If you need therapy get it..it’s like a tune up for the mind.
9. Don’t let your pain turn into hate, learn to cope and move forward…keep love in your heart
10. Keep hugging your kids and never ever give up on them!
11. They do learn and they will progress. Things do get better…I promise.
My husband and I didn’t have time to cry in our hectic daily life, and people around us didn’t have time for deep conversations about how we were handling our child’s diagnosis.
It was helpful for us to join a parenting class/support group for parents of kids with special needs (not limited to autism). At class we took time to grieve, and talked to people who listened and understood what we were going through.
I still have sad moments. Like when I read the week’s schedule for my child’s mainstream class, and saw that everyone else was learning cursive writing already (while my son is still struggling to write his name in capital letters). But most days are good days, and I hope everyone gets the help they need to get to that point, too.
I am a parent of a 12 yearold non-verbal autistic child. My advice to other parents who are struggling is this…When one recognizes this particular disorder as a way of life and knows in their heart that GOD gave you this child for a reason, acceptance becomes the norm.It has taken me two break-downs, fours years of therapy and enough heartache to last a lifetime to realize things are the way they are. I have made my peace and understand completely what I was put on this earth to do. Learn to make your peace. Learn to accept the truth and never ever give up hope. Always have faith in things working out and know that as a parent one will do whatever it takes for their child to succeed. Things do get better………….
As a grown sibling of a low functioning sister with autism and tuberous sclerosis, I watched my parents struggle with my sister’s aggressive and difficult behaviors, illnesses, and on-going hardships. My sister died when she was 11 and I was 13. I now believe her sudden death was related to tuberous sclerosis. My parents never recovered from all of the loss. My mom has had 2 major and 2 minor bouts of cancer. My dad had 4 heart attacks and 2 bouts of cancer. He died at age 64. As I stood by his side as he was passing, I felt my sister’s presence… she had come to lead him to God–this I know as true. My dad had said that she had made us better people and that she taught us to be so much more than we would have become had we not had her in our lives. There is a purpose for these children in our lives. I have gone on to become a speech-language pathologist and have worked in the field for over 30 years. Many of those years were spent working with kids on the spectrum. I thank God for teaching me the lessons I learned from my sister that has helped me help other families.
Look for the good in everything, keep hope and faith that God has a plan, and take care of your relationships and health. Surround yourself with nature and goodness. Try to maintain as normal life as possible. Enjoy and celebrate every small success… and love your child with all your heard.
Personally, I really just want to kill everyone I see. No one has a clue what this is like and I am sick of their stupid pity and their petty well wishing remarks. Then there are the little old ladies who love to point out to me that he is going to catch pneumonia w/o his shoes and socks on really loud in front of everyone like they got the Mother Theresa award for parenting and childrearing from Better Homes and Gardens or something.
I am right there with Christinna Guzman — my son is 17, too. Still “fairly severe.” Still autistic. But we are a happy family, nevertheless, despite occasional hardship. It does get better with time and with learning to connect with these kids. (Shameless plug: Check out “Making Peace With Autism,” which I wrote in 2005).
Help!! Help!! Help!! I want to know how this could happen one day I have the smartest little boy and the next I do not know what his future holds. I am so mad because no one seems to have answers, and I still do not accept it.
My son with autism is 11. When he was a toddler and we were just finding out about his disability (1st child–we didn’t realize his language skills were lacking), a friend of mine told me something that I still remember. She was a very wise woman, although young in age, and she looked me right in the eye and said “God gave you Jimmy for a reason. You are the best parents he could have. Never forget that he is yours because you and Cliff will take better care of him than anyone else”.
She was right. Our son’s disability is on the mild side (but mild autism is still a challenge). We live in a school district with an excellent Autistic support program. We had the ability to pay for three years of OT when Jimmy was 3-6 years old that wasn’t covered by insurance.
Do I get angry? You bet I do. But, then I look at my son, who is happy almost all the time. He smiles, he cooperates, and he tries so hard in school–harder than I ever worked in my life, and I have a Masters degree–and he still tells me every night that he is happy before he goes to sleep.
Hayden (6 yrs old)
Reagan (5 yrs old)
Savannah (3.5 yrs old)
they are my heroes…all 3 of my children have autism…everyone wants to compliment me for being so strong…it’s not about me…it’s about them…they are the children that have therapy all day long…who are frustrated because they have limited language or fumble with zippers because of fine motor delays…i can tell you that my life is hell on earth raising these very young 3 children as a single mom…but i won’t…because what i want you to know about them is they are my heroes…i honor them and love them with every fiber of my being…i have learned the true meaning of unconditional love from them!!
Tired? Yeah I get tired. Frustrated? Yup, that too. 2 of my 3 have Autism, and yet, they are my buds. My youngest is almost 10 and he is just now considered verbal! (Yippee)When I get frsutrated or angry, best thing for me to do is Stop, and LOOK at how far my boys have come and then I usually take my youngest son for a walk.(My middle child is very high functioning and wants to go out with his friens not his Mom). On the walk, I point out things, trees, sand, snow, whatever, and that gently reminds me how truely lucky I am. He loves to walk with me, and I him. He teaches me patience and the true meaning of pride and love.
Support networks are terribly important. an aide to talk your child out in the community is so important. A break, time alone with the other children, or time to yourself.
I also work in a Community based Centre for Autism and it is my blessing. I hear stories from a variety of families and it shows me that I am not alone, and it gives me new ideas from other parents who have been doing this longer than I. Parent support…priceless.It does get easier with every passing day, sure you will still mourn for the lack of party invitations and friends at the door, but thats normal. Allow yourself to FEEL. Then after acknowledging your feleings, take a deep breath and begin again, it really is ok.
My 22 year old Kevin is moderate on the scale. At this point, his daily life is predictable and normal. My most enjoyable part of the day with him is my time when I put him to bed and he tells me about his day (he lists item by item everything he did). But the look in his eyes and the smile on his face, tells me he realy is a happy child. The lost dreams and important things he can’t do are only important to me, not him. I get by with the hugs and smiles from my buddy.
When I get really tired and angry or envious of parents of normal kids, I try to put myself in my son’s shoes. Imagine what it would be like not to be able to talk or tell me why he doesn’t like to ride in the car, then I watch him while he sleeps and he looks so peaceful and happy. I wonder if he can talk in his dreams? I also have a glass of wine and that helps:-)
Reading your comments here has been helpful to me. My son is not autistic; no one is quite sure what he does have, but he is globally challenged. He is 13 and reads at a third-grade level, and his comprehension is not good at all. He’s still struggling with his times tables, and adds and subtracts on his fingers. Socially, he often seems much younger than his peers. He didn’t speak until he was four, and didn’t speak in full sentences until he was nearly 10. Even now, his speech can be difficult to understand, and he leaves words out. I blame myself for this, whatever this is, and although things have been like this since he was a year and a half old (he was fine for his first 18 months), I still haven’t accepted it. I panic at night, worrying about what will happen to him when I’m gone (he has no siblings, and my extended family is a mess). Reading what others in similar situations have to say is comforting. Sometimes I feel all alone in the world - everyone I know, their children are superstars. A-students, good at sports, cheerleaders, whipsmart, popular. I often hate them all. I don’t know anyone with a child like mine, and because whatever afflicts him is nameless (just because no one, not even the doctors, wants to say retarded, and frankly, the term doesn’t actually fit for a variety of reasons too complex to mention here), it’s very lonely.
Susan, you are a hero to me. I applaud your positive attitude, it is refreshing and I thank you. Your kids are gifts and thank goodness they have you as their Mom. I have two boys, my oldest is autistic and my husband and I never felt angry about that - I have had anger at other’s judgements but really I focus on my two boys. I too believe these children are angels sent from heaven to teach us the meaning of unconditional love - something I have learned from my son and I am thankful every day GOD chose us to care for him and our youngest. We are active Son-Risers (www.son-rise.org) and really it is all about attitude - I find the program motivating and uplifting and so our children feel that energy too.
For those of you groping with the cause of autism, get yourself a copy of “Evidence of Harm” by David Kirby. After you are convinced that the mercury in vaccines caused your child’s autism, find yourself a Defeat Autism Now (DAN) doctor and follow his/her advice.
Although both my daughters have autism, I’m too exhausted following the DAN protocol to get too depressed. Plus, watching them get better encourages me. I still get sad from time to time when I see other kids, and sometimes the progress seems so slow, but I am convinced we are doing the right thing by getting the poison out of their systems and repairing the damage caused by the mercury.
I have three kids and all are special needs but our middle girl has a mild to moderate form of autism. My oldiest son has a facial deformity… no treatment and consequently it affects his eyes ( reading) and his hearing. My youngiest daughter has obsessive compulsive disorder but is normal everything else.
I never expected my life to be this hard. I enjoy taking care of my kids but I am envious of other couples/families who get to take vacations, go to malls or other outings without having plan everything in advance or to the nth degree.
We do DAN for Sam which is costly and time consumming.
All my kids have advanced and that is blessing but with Sam ( autism) there is always some sadness and anger. She didn’t deserved this… none of these kids or families deserve this.
This week she will be 9 years old and she has no friends for her party… so cousins and her brother’s and sisters friends will have to do.
I worry about Sam’s future and when my husband and I can’t care for Sam…and how it will fall on her siblings.
I do see the blessings… but I still feel the pain that parents with normal typical children don’t understand…. it comes and go ….
Heres’ to 2007 a better year for our kids… ourselves and our families
Joan, thank you kindly for your words…they mean a lot and it is words like yours that keep my positive and focused…don’t get me wrong…there are many days i am down…having 3 kids stimming at the same time, usually at the supper table can really give me a dose of my reality…and i do still cry, for the childhoods they never got to have and for the motherhood i anticipated my entire life that i didn’t get…but it never fails, when i put each of them to bed every night, the peacefulness that comes over me is incredible…to watch the rise and fall of their chests with each breath…to hear only the silence of their rooms…to feel in my heart and know in my soul that i’m the better person by having them in my life…i keep focused on that…so the next morning i am able to get out of bed and start my day of nothing but autism all over again…tonite i will pray a prayer of peace for all of us here…
Finding out that one has a child on the autism spectrum often feels as though you’d planned for a trip of a lifetime to France. You learned the language, planned your itinerary, converted your money, made arrangements for lodging, etc. But then once you were on the ground you found out that you were given a one-way trip to Siberia. You didn’t know the language, or anything about the location, you had no useable funds or lodging, you didn’t know a soul, and you couldn’t get back home. Ever. Your whole life had changed and the unfamiliarity, fear, anger, and pain it caused was often overwhelming and terribly depressing.
That’s how it felt to me, back when.
Even though my son is high functioning and nearing the age of 20, I still feel pain when I consider what he’s gone through and what he may go through in the future. Life is so hard for our kids. It’s impossible to not worry about them.
However, if I could redo my son’s early years I would follow much of the advice I’ve read here. Many of you made excellent points, but I have to say that Christine’s list seemed to say it all. Those are the things I would do.
So, for those who’ve written who feel such bewilderment and pain I’d have to say; print that list out, tack it to the wall, and follow it to the letter! Those things will help you and yours. It’s the truth. I’m not saying it will be easy, but it’ll be better than the place you’re in now.
i’ve read most of these comments, and the key to success seems to be to have support…..what happens when you live somewhere where there is none…but can not move to where there is?
This is my first time on this site but I wanted to share some of my thoughts with you all. I am the mom of an eighteen year old ‘boy’ with autism. The reason I am writing is to give you all hope that things can be better. I know that when Brandon was young, I never would or could have believed that I would feel normal again. But today I do! And I have to say that this is the best time of my life BECAUSE of my experiences with Brandon. I am writing this note with the hope that it gives at least someone a ‘lighter moment of hope’ in your futures.
) Anyhow, one day a friend gave us a video tape of ‘twenty four ways to fix your car’. it was a gag gift for my husband. But Brandon started watching it in our bedroom. Over and over he would go in and watch it…and one day he came out to our car, had me open the hood and said, “this is the air filter, this is the wing nut, you turn it finger tight.’ and he proceeded to do it. I couldn’t BELIEVE it. I had had NO clue that he had retention like this. But this triggered me to start to make videos for Brandon. Because he related to our lawn men and their equipment, I would go out and tape them…all the while talking in the background about things that I wanted for B. In other words, I might have said something like, “Look how the men are talking to each other. See how they say ‘hi’.You can say hi to them too.” It was SO basic. But B loved his tapes and an amazing thing happened, he became socialized. I know that is a strange way to put it, but he started to become more aware of EVERYTHING. Listening to me chatting with these men taught B about conversations and social interaction. Miraculously, he also showed that he had stored, retained, and could use all the moments I had spent over the years, doing word modeling with him. After a few year, when he was in the fourth grade I ramped things up a bit and started to do what I thought would be ‘pre-reading’ and I started to spell words while I was talking on the tape. For example, I might have said “See how Pancho mows that lawn. Mows M…O…W…S. Mows.” I did every sight word, lots of noun etc etc. And when he went to school in 4th grade he had such retention that he was the class spelling champ. The ’strange’ thing is that he couldn’t and can’t read a word.That is the diffuse brain damage at work. But the bigger thing is how this showed how much POTENTIAL he had had all along.
The funny thing was that he still wasn’t that easy to understand so the teachers couldn’t figure out the word. And once they did, they weren’t sure what it meant. What a breakthrough moment for us all!!! 
I was SO overwhelmed by everything surrounded Brandon when he was young. He had had a stroke when he was born and was having seizures and had to have a couple of heart surgeries. On the more mundane (but daily life shattering) side, He wasn’t potty trained til he was six. His language was unintelligable til he was eight or so. (When he was in third grade or so, something connected in his brain and the stuttering just stopped. One day our ten year old daughter came in and said ‘Have you heard Brandon today? He isn’t stuttering anymore.” Incredible, hmm?) Anyhow the gist here is that B was so ‘unconnected’ to people and regular life. Instead he loved machines and gadgets and totally seemed oblivious to all of us around him. (We would go away for a weekend now and then with our girls, and when we came home, he would come running…past us to our car!! He loved machines.
Over the years, I continued to work with B. I would set ‘goals’ in my head and then put them on the tapes for him to watch. And example: One of the things that our family likes is vocabulary. One of the first words I taught B when I decided to put vocab on his tape, was the word ’self-sufficient’. (This was fairly soon after the stuttering stopped.)I figured if a boy who had stuttered could say that, he could say just about anything, and more importantly, I thought that if you have that ‘one word’, you can hang so many important ideas off of it. It was no problem for him. Later I taught him the word ‘cocophany’ and explained how it is a ‘bunch of different sounds all jumbled together’. He walked into his classroom one day and said, “Class ,class, you need to settle down (that is what his teacher would say) becuase it is A COCOPHANY in here!” He hadn’t just learned these thoughts ‘by rote’ but showed that he could use them creatively in his daily life.
Over the years I continued to make these tapes for B and he would watch them endlessly.(I have come to realize that tapes ‘filled in language’ for Brandon in a way that he doesn’t have inside. They ‘filled the void’ within his thoughts.) It was amazing how B would pick up the next growth task I would be presenting without me having to be drilling him or doing hardcore ’sit down and listen’ teaching. One of the most important videos I made was at a Truck fair. It was to show preschoolers about different jobs that men do. I went with my camera and ‘interviewed’ the men. I told them what I was doing, gave them a ‘cheat sheet’ of what would be appropriate for them to say, and then video taped them. My theme with this tape was ‘how to be a working man’. This tape was SO influential!!! It became the framework that he hung his thoughts upon.
Skip to the future and to today. Brandon now has a little lawn business that he has created here. He has a golf cart and trailer for it and he has his own lawn mowing equipment. he goes out every weekend with his habilitation girl and they do the yards. He is highly social and EVERYONE loves him!!! And he is very ‘on top’ of this whole thing. Earlier this Summer I was thrilled when he decided to put in an applicaton at our neighhborhood grocery. Every time he would be in there, he would go up to the courtesy desk and say ‘can you please tell me how my application is doing?’ Finally they told him that he needed to call the manager and gave him her number. On his own, he did and a few months later we got the word that he could start working their. He started two weeks ago and he is THRIVING!! The thing about autism to me, is that once an autistic person ‘gets the pattern down’, they can duplicate it easier then other people. So doing the repetitive job of bagging, while all the while being able to be social on a casual level is a job made in heaven for B.
I am writing this today not to brag about B. Instead, I am sharing these ideas because I think everyone needs to have a hope in their lives. For us, the thing that really made the difference and upon which everything else flowed was the personal video tapes. There is no magic to making them. Figure out what your child loves (in our case ‘was obsessed with’) and use that as your ‘backdrop’ to language. Whatver you choose has to be something that will engage your child. For instance if your child is fixated on rolling cars back and forth, that would be the setting. Then record people coming into the scene and talking with your child about the cars. While this is going on, you can be talking too with the person and your child. Make sure and get A LOT of pix of your child even if they don’t seem to be reacting in the tape. I think one of the things that makes this work is that EVERYONE loves to see themselves on TV. So watching this tape is a very empowering moment for your child. An example interchange would be
You:: ‘Hi Dad. I see you came to play with Ethan” and then let the dad respond with something like “I love to watch him play. I used to play when I was a little boy. I loved my trucks too.”
You: “what do you like best about his cars, Dad?” and he could say something back like ‘I like how the yellow one is bigger then the red one. I like how they all roll.” or whatver.
I consider these tapes a very effective way of ’setting the structure for success’and believe in the power of repetition to change lives. I believe it so much that I went to school to become a certified hypnotherapist. (No I am not wacky)Hypnotherapy is about having people relax to accept the thoughts that they asked me to give them. What sets me apart from most hypnotherapists however is that I don’t believe in having a person come back to me over and over. Instead, I make them audeo tapes with the thoughts to help them reach their goal. I truly believe that through the repetition of exact language and specific thoughts, people can have their lives change. In Hypnotherapy it would be explained as ‘letting thoughts sink into your subconscious mind’.My oldest daughter, who is getting her doctorate at Vanderbilt in Autistic Research, described it as ‘creating new neural pathways’. Whatever it is, I believe there is such potential for this. I say this not only because of how Brandon’s life transformed, but because as a hypnotherapist I created a program based upon what I had done with B, to help children stop bed wetting. (I based this therapy upon a study from Stanford university and then used the same idea of repetition to create that neural pathways) The potential power of our minds is just so amazing.
In closing (finallly. I have Xmas gifts to wrap but wanted to send a short note here as a little holiday ‘offering’ but I can’t stop typing cuz I remember just how hopeless I used to feel) anyhow, in closing I would encourage you to read a book written by an autistic woman who has her PhD. It is so revealing! The book is Tempe Grandin’s DOGS IN TRANSLATION where she talks about how one of the big differences for an autistic person is that they don’t think in words but that they think in pix. TI picked this book up because I thought it would help me understand my ‘nutso dog’. But instead it transformed my concept of how Brandon functions. To me the process of Brandon thinking is kind of like seeing him in the middle of a revolving cylinder. All these pix are just flowing around and around and around him. And he couldn’t get any grasp to help him move out into the world. I believe that what we as parents need to do is ‘insert’ langauage ‘props’ into this cylinder. I imagine it kind of like a magician who is standing on the outside of the cylinder who then sticks broom handles into the tube. ISuddenly from the inside, there are ‘rungs’ to help you manuever. So if you are inside and everything is spinning around you, the tapes and words, give you a handle to slow the spinning and hopefully pass through the walls that are keeping your ’self’ locked in. Anyhow, that is how I see it now. :} I hope these thoughts have helped some of you, feel that there IS hope out there for your child. I have two books that I have laying on my fireplace that to me speak to what we all need in our lives. One is Obama’s THE AUDACITY OF HOPE. Aren’t those amazingly powerful words? The other books is called EMOTIONAL ALCHEMY. Alchemy is about changing straw into gold. I believe that we ALL, at some time in our lives, need to consciously create emotional alchemy by being ‘audacious’ enough to allow a little hope in our lives, and to believe that what we are seeing today, is not what our futures will be. My blessings to you all on this path. I will check in to see responses.
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Holiday Hugs!
Lori
This is my first time on this site but I wanted to share some of my thoughts with you all. I am the mom of an eighteen year old ‘boy’ with autism. The reason I am writing is to give you all hope that things can be better. I know that when Brandon was young, I never would or could have believed that I would feel normal again. But today I do! And I have to say that this is the best time of my life BECAUSE of my experiences with Brandon. I am writing this note with the hope that it gives at least someone a ‘lighter moment of hope’ in your futures.
) Anyhow, one day a friend gave us a video tape of ‘twenty four ways to fix your car’. it was a gag gift for my husband. But Brandon started watching it in our bedroom. Over and over he would go in and watch it…and one day he came out to our car, had me open the hood and said, “this is the air filter, this is the wing nut, you turn it finger tight.’ and he proceeded to do it. I couldn’t BELIEVE it. I had had NO clue that he had retention like this. But this triggered me to start to make videos for Brandon. Because he related to our lawn men and their equipment, I would go out and tape them…all the while talking in the background about things that I wanted for B. In other words, I might have said something like, “Look how the men are talking to each other. See how they say ‘hi’.You can say hi to them too.” It was SO basic. But B loved his tapes and an amazing thing happened, he became socialized. I know that is a strange way to put it, but he started to become more aware of EVERYTHING. Listening to me chatting with these men taught B about conversations and social interaction. Miraculously, he also showed that he had stored, retained, and could use all the moments I had spent over the years, doing word modeling with him. After a few year, when he was in the fourth grade I ramped things up a bit and started to do what I thought would be ‘pre-reading’ and I started to spell words while I was talking on the tape. For example, I might have said “See how Pancho mows that lawn. Mows M…O…W…S. Mows.” I did every sight word, lots of noun etc etc. And when he went to school in 4th grade he had such retention that he was the class spelling champ. The ’strange’ thing is that he couldn’t and can’t read a word.That is the diffuse brain damage at work. But the bigger thing is how this showed how much POTENTIAL he had had all along.
The funny thing was that he still wasn’t that easy to understand so the teachers couldn’t figure out the word. And once they did, they weren’t sure what it meant. What a breakthrough moment for us all!!! 
I was SO overwhelmed by everything surrounded Brandon when he was young. He had had a stroke when he was born and was having seizures and had to have a couple of heart surgeries. On the more mundane (but daily life shattering) side, He wasn’t potty trained til he was six. His language was unintelligable til he was eight or so. (When he was in third grade or so, something connected in his brain and the stuttering just stopped. One day our ten year old daughter came in and said ‘Have you heard Brandon today? He isn’t stuttering anymore.” Incredible, hmm?) Anyhow the gist here is that B was so ‘unconnected’ to people and regular life. Instead he loved machines and gadgets and totally seemed oblivious to all of us around him. (We would go away for a weekend now and then with our girls, and when we came home, he would come running…past us to our car!! He loved machines.
Over the years, I continued to work with B. I would set ‘goals’ in my head and then put them on the tapes for him to watch. And example: One of the things that our family likes is vocabulary. One of the first words I taught B when I decided to put vocab on his tape, was the word ’self-sufficient’. (This was fairly soon after the stuttering stopped.)I figured if a boy who had stuttered could say that, he could say just about anything, and more importantly, I thought that if you have that ‘one word’, you can hang so many important ideas off of it. It was no problem for him. Later I taught him the word ‘cocophany’ and explained how it is a ‘bunch of different sounds all jumbled together’. He walked into his classroom one day and said, “Class ,class, you need to settle down (that is what his teacher would say) becuase it is A COCOPHANY in here!” He hadn’t just learned these thoughts ‘by rote’ but showed that he could use them creatively in his daily life.
Over the years I continued to make these tapes for B and he would watch them endlessly.(I have come to realize that tapes ‘filled in language’ for Brandon in a way that he doesn’t have inside. They ‘filled the void’ within his thoughts.) It was amazing how B would pick up the next growth task I would be presenting without me having to be drilling him or doing hardcore ’sit down and listen’ teaching. One of the most important videos I made was at a Truck fair. It was to show preschoolers about different jobs that men do. I went with my camera and ‘interviewed’ the men. I told them what I was doing, gave them a ‘cheat sheet’ of what would be appropriate for them to say, and then video taped them. My theme with this tape was ‘how to be a working man’. This tape was SO influential!!! It became the framework that he hung his thoughts upon.
Skip to the future and to today. Brandon now has a little lawn business that he has created here. He has a golf cart and trailer for it and he has his own lawn mowing equipment. he goes out every weekend with his habilitation girl and they do the yards. He is highly social and EVERYONE loves him!!! And he is very ‘on top’ of this whole thing. Earlier this Summer I was thrilled when he decided to put in an applicaton at our neighhborhood grocery. Every time he would be in there, he would go up to the courtesy desk and say ‘can you please tell me how my application is doing?’ Finally they told him that he needed to call the manager and gave him her number. On his own, he did and a few months later we got the word that he could start working their. He started two weeks ago and he is THRIVING!! The thing about autism to me, is that once an autistic person ‘gets the pattern down’, they can duplicate it easier then other people. So doing the repetitive job of bagging, while all the while being able to be social on a casual level is a job made in heaven for B.
I am writing this today not to brag about B. Instead, I am sharing these ideas because I think everyone needs to have a hope in their lives. For us, the thing that really made the difference and upon which everything else flowed was the personal video tapes. There is no magic to making them. Figure out what your child loves (in our case ‘was obsessed with’) and use that as your ‘backdrop’ to language. Whatver you choose has to be something that will engage your child. For instance if your child is fixated on rolling cars back and forth, that would be the setting. Then record people coming into the scene and talking with your child about the cars. While this is going on, you can be talking too with the person and your child. Make sure and get A LOT of pix of your child even if they don’t seem to be reacting in the tape. I think one of the things that makes this work is that EVERYONE loves to see themselves on TV. So watching this tape is a very empowering moment for your child. An example interchange would be
You:: ‘Hi Dad. I see you came to play with Ethan” and then let the dad respond with something like “I love to watch him play. I used to play when I was a little boy. I loved my trucks too.”
You: “what do you like best about his cars, Dad?” and he could say something back like ‘I like how the yellow one is bigger then the red one. I like how they all roll.” or whatver.
I consider these tapes a very effective way of ’setting the structure for success’and believe in the power of repetition to change lives. I believe it so much that I went to school to become a certified hypnotherapist. (No I am not wacky)Hypnotherapy is about having people relax to accept the thoughts that they asked me to give them. What sets me apart from most hypnotherapists however is that I don’t believe in having a person come back to me over and over. Instead, I make them audeo tapes with the thoughts to help them reach their goal. I truly believe that through the repetition of exact language and specific thoughts, people can have their lives change. In Hypnotherapy it would be explained as ‘letting thoughts sink into your subconscious mind’.My oldest daughter, who is getting her doctorate at Vanderbilt in Autistic Research, described it as ‘creating new neural pathways’. Whatever it is, I believe there is such potential for this. I say this not only because of how Brandon’s life transformed, but because as a hypnotherapist I created a program based upon what I had done with B, to help children stop bed wetting. (I based this therapy upon a study from Stanford university and then used the same idea of repetition to create that neural pathways) The potential power of our minds is just so amazing.
In closing (finallly. I have Xmas gifts to wrap but wanted to send a short note here as a little holiday ‘offering’ but I can’t stop typing cuz I remember just how hopeless I used to feel) anyhow, in closing I would encourage you to read a book written by an autistic woman who has her PhD. It is so revealing! The book is Tempe Grandin’s DOGS IN TRANSLATION where she talks about how one of the big differences for an autistic person is that they don’t think in words but that they think in pix. TI picked this book up because I thought it would help me understand my ‘nutso dog’. But instead it transformed my concept of how Brandon functions. To me the process of Brandon thinking is kind of like seeing him in the middle of a revolving cylinder. All these pix are just flowing around and around and around him. And he couldn’t get any grasp to help him move out into the world. I believe that what we as parents need to do is ‘insert’ langauage ‘props’ into this cylinder. I imagine it kind of like a magician who is standing on the outside of the cylinder who then sticks broom handles into the tube. ISuddenly from the inside, there are ‘rungs’ to help you manuever. So if you are inside and everything is spinning around you, the tapes and words, give you a handle to slow the spinning and hopefully pass through the walls that are keeping your ’self’ locked in. Anyhow, that is how I see it now. :} I hope these thoughts have helped some of you, feel that there IS hope out there for your child. I have two books that I have laying on my fireplace that to me speak to what we all need in our lives. One is Obama’s THE AUDACITY OF HOPE. Aren’t those amazingly powerful words? The other books is called EMOTIONAL ALCHEMY. Alchemy is about changing straw into gold. I believe that we ALL, at some time in our lives, need to consciously create emotional alchemy by being ‘audacious’ enough to allow a little hope in our lives, and to believe that what we are seeing today, is not what our futures will be. My blessings to you all on this path. I will check in to see responses.
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Holiday Hugs!
Lori
How does anyone feel about calling the police when a 10 year old child is out of control and physically abusive?
I am sad tonight. The truth is I’m delighted with my 9 year old autistic son. I homeschooled him for three years and he responded beautifully. I had to put him in school because I got sick and he hasn’t really progressed since.
After a year and a half, I’m homeschooling again.
I’m so angry. My son is talking and doing very well. I had him potty trained by his fourth birthday. He started talking again at around five and is now becoming fully verbal at 9.
Just since I’ve started homeschooling him again using a multisensory approach combined with movement, he’s already beginning to enjoy learning again.
Some of things people say are so ignorant. They just don’t get it that they’re talking about my Prince William!
Some of the teachers are so bad and run away by trying to push off the child into another setting or onto another teacher.
Many of the homeschooling groups are exclusive and avoid you like the plague if you have a special needs child.
Sad. Feels better to get it off my chest.
Good news, I AM a good teacher, use a multisensory approach and am pleased as punch with my son and his progress.
Tomorrow’s a bright shiny new day.
“Are you weary, are you heavy hearted? Tell it to Jesus, tell it to Jesus!” I don’t know what I would do without the Lord. He gives me certainty in knowing that there is a reason for my beautiful autistic son, and sometimes just as important, that there is a reason that I have him. When I get a little down, I thank God for all of my son’s great attributes, and that helps me so much!!!