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Go to Treatment Options
Sibblings with Autism Diagnosis
I am the mother of 4 children: a son who is within months of turning 5-years-old, a 2 ½ - year-old son, and twins that are currently 10 months old. Even now, as I type their ages, I wonder how I maintain my sanity. When I tell people that I’m the mother of 4, most are shocked, some are sympathetic, and a few simply do not know what to say. Little do they know that my 2 oldest sons have different forms of autism.
My oldest son, Gage, is on the autism spectrum and struggles with a speech delay and sensory issues. I must admit that my concerns started shortly after his third birthday, when I realized that he did not talk as clearly as his peers at daycare. Unfortunately, instead of seeking advice from his pediatrician or a speech pathologist, I convinced myself that his speech would improve with age. After all, “children develop at different rates”, right? Although with time, his vocabulary increased, his articulation did not improve. As difficult as it is to admit, it was embarrassing when he spoke to strangers in public. Finally, I contacted the school system and requested a speech evaluation. I went to the appointment thinking that my child had a speech delay, but left feeling as if he would never be successful at school. This is the case because the speech pathologist informed me that Gage would not benefit from speech therapy due to a lack of focus and inability to pay attention or follow directions. I felt as if I had been punched. In desperation, I decided to email Dr. Brown, who I knew from the psychology department at UTM and ask for advice. As I started writing, I realized that the speech delay was just one concern I had for Gage. I also realized that he did not interact with other children at daycare. He played in the same area as his peers, but never actually participated in play with them. Gage was not completely potty trained at age 4, and could not hold a pencil correctly. Dr. Brown evaluated Gage, explained his diagnosis, and made recommendations to help Gage improve. Gage now attends ABA sessions, speech therapy, and occupational therapy weekly. I am proud to say that his speech, behavior, and interaction with other children have improved greatly. He is also potty trained. Although he still struggles with certain things, Gage has improved more than I imagined possible.
As I focused on getting Gage the help he needed, I realized that my 2 ½ year-old son, Grant, was changing dramatically. Grant developed normally and met all developmental milestones appropriately until shortly after his second birthday. At that time, it seemed like Grant changed overnight. He stopped making eye contact, spoke very little, and stopped socializing at daycare and home. In disbelief, I contacted his pediatrician, and to make a long story short, Grant was diagnosed with autism and referred to Tennessee Early Intervention. He is now starting to receive ABA from Dr. Brown, speech therapy, and occupational therapy weekly.
So, needless to say, I stay very busy. It has been a challenge to find the appropriate services and even more of a challenge to balance working, taking care of our family, and keeping appointments, not to mention the stress of finding out what services insurance will pay for and what it will not. But what I can say is that ABA has been a blessing. For me, the most frustrating and heartbreaking part of having children with special needs is not being able to “fix” the problem and feeling so powerless. However, using the ABA programs at home gets me actively involved with helping my children and decreases that feeling of helplessness. I believe in the benefits of ABA so much, that I drive a total of 4 hours every week to take my children to and from their ABA appointments, and would recommend it to any family.
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ABA for an Iraqi Boy with Autism 5/16/08
I received the email below at my website and with permission reproduced it below. Parents worldwide have problems getting services. This Iraqi gentleman makes the most of his situation.
Dear Dr.Brown;
Thank you very much, I am really appreciate every single word I read from the ABA e-book, ABA course & Case History eBook. I was completely lost in this country. I am Iraqi dentist and live in United Arab Emirates. I did assessment for my son, age 3 years and 6 months, here by the only specialist in Dubai who had certificate in Autism from Birmingham in UK. She gave him diagnosis of Autism. I showed her a video which helped a lot in the assessment and she told me we will start our treatment with Resperidal. I was surprise by her treatment because she didn't start with any behavior management first to see if the child can be improve or not. I left her clinic and never went back. I visited few autism centers in UAE. They are just starting to give attention to Autism in this country and they gives the priority to the local people (UAE citizenship) and put the others on the waiting list for a years. So I have been dedicated my time searching and reading about Autism since I got the diagnosis trying to help my son. I made food intolerance test for him and the result shows that he should avoid Dairy and wheat product and some other foods also. I already start with him 3 months ago Casein Gluten free diet according to the research I saw from internet. This diet is really effective it improve his eye contact, he stop searching for hair to eat (pica), he start imitate , decrease in hyperactivity, improve in the relation with siblings. He has normal manual dexterity (eating by himself, walking, wearing his cloths with simple assistants). I engaged him in playing group (nursery for typical children ) and he is happy with that but no communication with other children. Before I read your course I start doing my best with him to start verbal communication (he has no words at all), so I start taking pictures for the different foods he eat, bath room, swing,.etc,every time I gave him a food I showed him the picture and tell him the name, after few days I start to show him the pictures especially the fruit that he likes to eat and every time he say the name I say bravo and give him that fruit as reinforcement (ex. if I showed him picture of grapes and he said grapes. I take him directly to the kitchen and give him grapes). It was very effective way and he has now 11 words so far. After I read your course I start with him ABA program. He refused riding bicycle and by using method of successive approximations (shaping);
1- I holding him and let him sit on the bike ( good boy, he will riding bicycle ) then as he stay few second sit ,I give him reinforcement ( I used mixed fruit sweet it is with out milk as he should avoid dairy ) .
2- I fixed his foots on the puddle and I stand in front of him and pulling the bike toward me by (saying come to me Hamza) his foots just pushed the puddles ,(good boy , riding bicycle. and give him reinforcement directly )
3- I stand little bit few steps away and call him (come to me), he push the puddles and once he touch me I give him the reinforcement directly, I never so him happy as he was that day (at that time I wish you Dr. brown be there so I can give you a kiss over your head, God please you).
4- After I that I increase the distant and the direction gradually .actually this improve this eye contact, follow the direction and compliant all at the same time.
Now I am working with caregiver in the nursery to make him stop the behavior excess (dangerous climbing).
I will answer all your quizzes and send it to you.
Sorry for the long email
Kindest Regards
I. H.
UAE
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A Mother's Perspective 7/15/06
A long and difficult journey, my now 4 year son and I have taken. Yet, Finally we are on the right track. The task we faced included DFS investigations of abuse from his father to 3 years striving to advocate for his need of assistance. I have always known from acid reflex to not talking at age
2 that something wasn't right.
I am still at a loss sometimes with what symptom belongs to what. Yet, my son amazingly stands up for himself, and did by refusing to go on visitation with his father. Needless to say we are still in a court custody battle over his not wanting to leave for visitation. Such a young age, not being able to talk enough to explain in detail...finally has changed. Now he is taking medications and all are aware of his reasons to have a severe adjustment disorder, his insistence on carrying his super heroes and warring those ridiculous hero costumes every where we go. (his obsession). He amazingly can recite movies of these heroes word for word....and acts them out while doing so. His speech left and came back slowly, and he has even went into a baby stage.....when under to much stress.
(all that his Father does is-is not believe, and says he doesn't need medications, there is nothing wrong) But, that battle is about over for my son too. And his Father I may add is autistic too, at least very narcissistic !
To all that have taken or are on our journey, I can only give this advise: Stay with it, advocate for his right as a little human, one that deserves love and respect for his wishes and feelings. I placed my son in a behavioral school, and through this others could see it was much more than a child not wanting to leave his mother (spoiled). Although I know the abuse has occurred while with his Father, that is not easily proven. My son is very independent, my little guy
that can now have assistance and be understood. A 4
year old boy that in many ways is all so grown up in
his realistic views of life and things. He his a marvel to know
and his intellect a WOW!
Call me a backyard rooster....but, no one can win at hurting
him or not treating him just....that is why I am a mother, my role to protect and nurture him.
We have a long way to go.... and I am expect some bad roads may lead us astray....but, we will do what is needed
and just try to let others stand in our way!
"wlwatkins" <wlwatkins@mozarks.com>
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Autism and the Christmas Holidays
12-1-05
I have had many parents of children with autism or other neuropsychological disorders tell me that the Christmas holidays are an especially difficult time for them. Of course, any holiday can be difficult for any child with the changes in routine. But Christmas is usually the most difficult holiday for parents of children with autism or other neuropsychological disorders.
There are no sure-fire techniques to use with your child that will insure a "Martha Stewart Christmas." Families who have children with autism or other neuropsychological disorders have used the following 10 tips to make their Christmas better. And this year I'm adding a new suggestion to the list.
Several years ago Leigh Grannon and I did a study using pictures to increase social interactions in a child with autism. Children with autism are visual learners, and I have suggested to parents that they take pictures of what is going to happen at Christmas--the tree, the gifts, the relatives--and starting several weeks before Christmas show these pictures repeatedly to the child with autism. Tell a little story to the child while he/she is looking at the picture about how to behave, what's going to happen, and what the child can do if it is too much. Include your child in the pictures if possible. A picture of the child going to his room to escape the noise and confusion when he/she gets overloaded seems to help, too.
1. Try to keep your child in his or her usual routine as much as possible.
2. Sensory over stimulation—the lights, the sounds, the smells, the relatives touching your child--are the main culprits during the holidays. Eliminating or minimizing these culprits are your best bet.
3. Some families who have children with autism or other neuropsychological disorders wait until Christmas Eve to put up their tree and decorate.
4. Some families let their children with autism or other neuropsychological disorders do all of the decorating. Children with autism or other neuropsychological disorders may line up or stack decorations rather than decorate in the traditional way, but so what.
5. Rather than try to do the Christmas shopping with children with autism or other neuropsychological disorders in a crowded, noisy mall, many families shop by catalog or online and let the child point to or circle the toys he/she wants. Websites, such as www.stars4kidz, offer a variety of toys for children with autism or other neuropsychological disorders. Just type "autism toys" in your search engine.
6. Tactile toys are often a better choice for children with autism or other neuropsychological disorders. Toys that make sounds or involve too much stimulation or are too complex may not cause an aversive reaction in the child. As mentioned above there are web sites that sell toys designed for children with autism or other neuropsychological disorders. Try ordering some of these toys and then let your child select the ones to play with as they are unwrapped.
7. Talk to relatives before they come over about the best way to behave with children with autism or other neuropsychological disorders. Have them read my article, “What Horses Tell Us About Autism,” which is available for free on the second page of my website.
8. Generally, kids with autism or other neuropsychological disorders do better in the morning than in the late afternoon or evening when they are tired. It may be better to schedule Christmas events at these times.
9. The parents of children with autism or other neuropsychological disorders need to relax themselves. Often the child with autism picks up on the parents’ stress and that is enough to ruin Christmas.
10. And last but not least, realize that you are probably not going to have a perfect food, perfect decorations, and perfect gifts. Christmas with children with autism or other neuropsychological disorders may not be traditional, but it can still have real meaning. (Sometimes I wonder if children with autism or other neuropsychological disorders know that Christmas has become too commercial.)
I wish you and your child the happiest of holidays.
Gary Brown, Ph.D
Psychologist/HSP
(Thanks to the mothers of children with autism or other neuropsychological disorders who helped me with this post.)
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A Mother's Perspective: Am I Doing Enough?
Lori Phan
4-10-05
It's been three years since my son, now five years old, was diagnosed with autism. It's been
a long three years. Alot has happened. Alot has changed. I've changed, for sure. So has my
son. Long-gone are those non-verbal days of constant crying. Long-gone are the days of non-
stop climbing, tearing the house to pieces, and staying up every night until 3:00 a.m.
My son is talking now. He can tell me that he wants cereal, that he's ready for bed, and that
his favorite Snoopy DVD is scratched. He's toilet-trained now, and he's compliant. He has a
normal sleep schedule, and I can't even remember the last time I caught him sitting on top of
the fireplace mantle.
And his days of being a runner have dwindled, he is now no longer trying to escape out the
front door or climb out a window every day. Maybe I can think about taking the alarms off the
doors and cutting off the fishing line securing the window locks. Well, probably not. He's
matured, but he's still unpredictable.
Through it all, the hardest thing to survive hasn't been the diagnosis, the searches for
funding, the extensive time spent in therapies, or even dealing with autism itself. The hardest
part of this all has come down to four words, one little question, Am I doing enough????
These four little words have haunted me since the very moment I received the diagnosis. In
three years, not a day has passed that I have not asked myself this question. And everyday, I
have felt a twinge of guilt and have fought back tears as I look at my beautiful child and think, "No, I'm letting my child down. I should be doing more." More speech. More ABA. More sensory
diet. More floortime. More teaching my child. I could have done moreSbut I didn't. This thought
and a wave of guilt have haunted me everyday.
Deep down, though, I know the truth is not so much that I didn't, but that I couldn't. The truth
is that I did what I could, all that I could, and I couldn't handle doing any more than that.
Mentally, emotionally, physically, and financially, I could only do so much. I could only give so
much without breaking. And I know that would have been the end result if I had pushed
beyond the limit I was already working at.
Making peace with this knowledge, with the uneasy answer and guilt that still accompany that
one haunting question, has been one of the most difficult trials in dealing with autism. And
yet, I know that the ultimate truth is that I'm doing all I can.
So here's that big question again, "Am I doing enough?" And here's my answer: YES. I know
I'm doing enough because I have advocated for my child, because I've secured the services
that are financially attainable, because I've researched, thought about, and implemented
programs for autism. I know that I've done enough because I've spent endless hours talking
to teachers, therapists, and doctors. I know I've done enough because I know there's not
much more I can do right now without breaking myself. And I know one more thing, that I do
not know who will be there to help my son if I, myself, am broken.
I've finally made peace with the knowledge that sometimes I CAN do more, and sometimes I
CAN'T. Sometimes it's enough to just get through the day safe and sane. When the days are
so long, I feel I can't handle any more stress, it's OK to play with my son instead of working
in more trials; it's OK to watch a movie rather than obsess over therapies and funding. It's OK
to have those times when I slow my life down and live instead of survive, laugh instead of cry,
play instead of work.
There are times to push, to add more, to do more. There are times to slow down, relax, and
take care of myself. There are times to work hard, and there are times to play. There are
times to obsess over autism, and there are times to stop thinking about it just for a little
while. There are times when I have to do more for my child, and there are times when I have
to rest. Understanding this and finding this balance is crucial. It's the only way to effectively
and continuously battle autism.
I still struggle with that haunting question and guilt when I feel I should be doing more. But I
try to let it go and relax when I need to relax. And know what? My son is doing OK. He is
gearing up for mainstream regular education kindergarten. And he's talking. And he's
compliant. My son is OK, even though he has autism and even though there were times when
more could have been done but I just couldn't do it then.
Sometimes, to speed things up you have to slow things down. And that's how it is with
battling autism. The trick is to slow things down when you need to rest and to know it's OK
to do that. To take care of your child, you have to take care of yourself. This isn't a luxury, it's
a necessity. So slow it down sometimes. You'll have plenty of battles tomorrow. Take a rest.
Play, live, and laugh, even if it's only for one day.
Keep the Faith,
Lori
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2-25-05
A mother's perspective
Dian
I remember when my oldest daughter, ivy, was first diagnosed with autism,
over 6 years ago, at the age of 2. the only positive thing i can say about it,.....maybe.... is
that, at last, we knew what the problem was. then again, even this was not anything
positive because, now, there definitely was a BIGGER problem, a problem too big for me to
handle, i was sure of that! i'm sure you understand.
now, there were so many additional things to worry about because of her diagnosis. how can
we help her; can we help her; what should we do next; who can we trust to help her; how
can we protect her from situations that she doesn't (and maybe never will) understand; why
did this happen; why us; will our other children suffer this same fate; will my husband and i
survive this; will our families welcome us, or be full of excuses; etc, etc. etc... again, i'm sure
you understand. the list went on and on and on...
What did we do? did we find the magical solution? did we, at last, have elusive truths for
sale? let me tell you. first, your attitude toward life changes, then, your personality changes.
perhaps, you thought you were mature, but in a situation like this, you are forced to face the
truth...the awful, disturbing truth that the plans you have made will have to wait, that the
world you live in doesn't have a clue. ...you must change, if you want the best for your child
because no one is going to sit down with you and tell you your child's rights, and everything
else that is available. reality check - - - they will tell you nothing, unless you ask, insist, and
sometimes fight. i was never a combative person, but when it came to my child (who is totally
dependent upon me) , i easily overcame that, and learned what i needed to know, fought
with the systems i needed to fight with, and slept good, at nite, knowing that i was doing my
best and moving forward. i could have easily fallen into the trap of pitying myself by hanging
out in internet chat rooms thinking of who to blame for my child's problems - what caused it?
what is a quick and easy solution to the problem? why will the system not help my child?
Now, fast forward 6 years. Ivy is, now, 8 years old, and attending public school with no pull-
outs. she is a happy, healthy, affectionate girl who loves school, who has friends telephone
and spend the night, who wants to look cool. she is no longer the autistic daughter, she once
was. true, she is still autistic (and always will be), but most people would never know that,
unless they were told. yes, she still is in therapy (both ABA and language), but i never could
have imagined her future, as being, so bright. i'm thrilled to say that our story is one "to be
continued".
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9-27-04
A Mother's Perspective
Dian
I was walking with ivy down the hill of our driveway to get the
newspaper when she decided to run ahead (about 30' ahead) of me.
suddenly, she stopped, turned around, and asked me where i was
going.
i told her that i was still following her (i had never stopped).
this reassured her, so she, then, turned around and kept running toward
the mail tube.
i picked her up at school one day (less than a year ago) when i was
wearing new sunglasses. she cautiously walked up to the passenger
side window and asked me if i was dian. she was very obviously
afraid to get into the vehicle because she was so confused, until
she heard my voice.
also, she tells me that she always wants me to live near her when
she grows up, so that i can help her (go places, decorate her home,
plant her flower garden, shop, watch her children, etc...). i'm positive
that she has never heard richard or i ever talk about anything like
that, but she seems to realize her situation.
anyway, i don't know if she sees fragments, or if it is just a
processing problem. things such as these are very sad (to me), but
i'm glad that, at least, she is cautious and thinks about things.
and..., after my sadness, i am heartened by remembering the huge
improvements she has made in the past, and the ones i'm confident that she will
continue to make in the future.
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5-21-04
A Mother's Perspective
Lori
left my son's daycare in tears today. It hit me out of the blue,
like a spring shower dampening an afternoon in May. It happens to us
all, I guess, the strength that carried us through the most
difficult autism days abandoning us without notice when things are
well.
It's a form of grief, maybe: A deep realization that others see our
children as different even though for us, that's just our kid. What
is different to them is normal to us. They look at our children and
see what's different; we just see our beautiful babies who are just
learning to talk and are facing autism with a strength and
self-assurance that we, the parents, may never know.
My son was so cute today, wearing his Wiggles shirt, his favorite
sandals, and the safari straw hat he got at the carnival. I watched
him this morning and fell in love again. His beautiful smile, his
precious laugh.
His recovery from autism has become my life. I've made so many
decisions, and questioned each one time and again. Finally, I am at
peace with my decision to keep him out of special education, to give
him the most "typical" experience I can by placing him in
structured, private daycare so he can be with typical peers. I've
tried to shelter him from the label of autism and special education
in the hopes that when people see my son, they will see my son, and
not a word or a condition or a disability.
So far, this has worked well. Many people who don't know about the
autism have seen him as "just a typical 4-year-old boy." But I'd
forgotten about his peers. I realized today that somehow, they know.
No one told them. They are preschoolers; they don't know about
autism. But they see my son as somehow different. I saw it today
through their simple acts of kindness, through their eagerness to
help him learn to swing by himself.
And so, my tears came today. The silent kind of tears. I felt so
alone, invaded once again by the feeling that my son and I are
battling this by ourselves.
No one saw those tears today, no one suspected a mother's pain as
she watched her son learning to swing alongside children who had
already mastered the skill. And they would not have understood if
they had not stood there, in that very spot, watching their own
beautiful child wearing that silly safari hat, facing another day of
autism and still smiling. In that one moment, I was proud, in love,
shattered, grateful, alone.
I don't know that I can explain to myself, much less to others, why
I cried today. But as I left preschool and drove to work, I thought
of the many mothers of autistic children I know and the tears I know
they've cried. I realized that I'm not alone, that someone does
understand and has stood there overwhelmed, in tears, while watching
their precious child facing the typical world. Today I realized that
I'm not alone in this battle. None of us are.
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A Mother's Perspective
Dian
My sister and I have always been close, so naturally, when we found out that we were both
expecting our first children within days of each other, life could not have been better. Our
pregnancies both progressed rapidly, and without incident, until December, when our baby
girls were born. My daughter was born first; then my sister had her daughter, nine days
later. Since we live close together, we were able to get together weekly to let the girls get
accustomed to each other, while my sister and I compared notes on their latest
achievements. My baby was the first to hold her own bottle and sit unassisted, while her
baby was the first to crawl and to walk, My baby was the first to point to all of her body parts,
but her baby was the first to talk. They were running neck and neck in achieving their
developmental milestones throughout the first year and into the second.
Later, my husband and I had our second child, a girl, when my first child was 19 months old.
My pregnancy again had progressed normally, and I had looked forward to the birth. In the
last few months of my pregnancy, however, I was extremely tired and not up to interacting
with my oldest daughter as much as I did before I was pregnant. At any rate, after my
second child was born, I immediately felt much better and had my normal energy level back.
It was then, however, that I first began to realize that something was different about my
oldest daughter. She had begun keeping to herself much more and did not seem to care if
she was getting attention from us or not. We had, also, noticed that she seemed to be falling
more than she used to. Ivy was always very coordinated, but now sometimes when she
would run, she seemed to just fall down for no apparent reason (her legs just buckled). It
was all very strange. At first, we thought that maybe she was just perplexed about the new
baby in the house, but when these behaviors persisted, I knew that something was wrong.
In addition to the above changes in her behavior, she had, also, virtually stopped talking. I
took her to her pediatrician and voiced my concerns, but he was not compelled to accept my
concerns because she was such a healthy baby. I knew there was a problem though, so I
more or less forced him to make her an appointment with a pediatric neurologist at Vanderbilt
in order to have her checked out.
When we arrived at Vanderbilt, they ran an EEG, MRI, and conducted observational
techniques before diagnosing her with PDD/autism. She had just turned two years old and
was immediately placed on an SSRI, Zoloft, that really helped increase her awareness of the
environment, again. The next thing that we did was enroll her in Applied Behavioral Analysis
(ABA) therapy which did wonders in getting her compliance level increased, so she could
successfully be enrolled in Speech/Language Therapy and Occupational Therapy (which
worked to improve her coordination, self-help skills, and pincher grasp). Also, we decided to
enroll her in full time day care with typically developing peers to improve her socialization
skills. All of the above behavioral intervention techniques are scientifically proven to be
helpful for autistic children. In fact, the earlier that a child can be diagnosed and treated, the
better their outcome will be.
Conversely, the problems that we encountered in getting her services included a pediatrician
who was extremely hesitant to ask for extensive testing on her behalf; grandparents who
refused to believe that she would not simply outgrow it, or that we simply were not "teaching/raising" her correctly; a web full of so called "cures" that were either hoaxes, or had
not been scientifically proven to be beneficial; a web full of chat rooms/groups that are all talk
and no action "pity party" environments rather than positive, uplifting, supportive
environments that are needed; and the added problem that autism spectrum disorders have
such a wide range of symptoms and varying degrees of severity. Given these roadblocks, I
can understand why some parents are so late getting their child diagnosed and into therapy,
and why some parents simply choose to give up and to think that the situation is hopeless.
This could not be further from the truth. My oldest daughter has progressed more than I
could have ever imagined. She is now 6 years old and in a regular kindergarten class. She is,
also, still in therapy, but her therapists are working to correct much higher-level problems
than they were when she first began. I can now visualize her with a promising future. There
are, however, many other children her age, whose parents have dropped the various
therapies, and their children have suffered dire consequences because of this. Sadly, these
children will probably always be completely dependent upon their parents for the remainder of
their lives. Getting a child properly diagnosed and treated is a lot of work both for the child
and for the parents, but when you consider the alternative, it is a small price to pay.
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