Parents and family members of children with autism
Hi. My name is Rachel and I was interested in starting a thread for parents and family members of children with autism. My oldest son, age 3 1/2 has autism, and I have long used this as my "excuse" for not taking care of my own health. I've shifted my thinking and am now focused on getting healthy so that I can be a better parent and have more energy to meet the unique demands of dealing with the challenges (and joys!!!) of raising an autistic child.
So, if you are a parent, sibling, grandparent, friend, whatever, who has a special person with autism in your life and you are interested in sharing with others, please reply and join in to this thread.
A little about my goals: SW 213, CW 196, GW 140
More about me: I am a school principal with a strong background in special education. I also teacher pre-service special education teachers at the university level. I think my perspective as an educator and a parent brings a unique element to my personal and professional roles. I have 2 sons, ages 3 1/2 and 2, a very wonderful husband, great friends, and supportive family (although none nearby). I enjoy scrapbooking, reading novels, and organizing my cabinets and drawers (weird, I know).
Reason: 3/12/08 moved to H&S forum.
I applaud you for your "mind shift". You need to realize that your son is going to need you for a very long time and you need to be there for him. Getting healthy is not just for you, but for him also. I do not have an autistic child, however, I am very interested in supporting people who have children with all types of disabilities. I can't pinpoint when or how I became so sensitive to this issue, however, I do believe that as parents we all owe it to each other to help out with our children's issue. No, I do not believe that it takes a village to raise a child, but it sure as hell helps when all the villagers are supportive of one another.
If nothing else, maybe a bump will help you find others!
I am a 47-year-old mom with 2 children. I have a 6 y/o son with autism/aspergers. He is homeschooled. I have a 15 y/o daughter that is in highschool, (not autistic). I am a medical secretary, and I work out of my home.
I'm a 36 year old mom with a 5 year old diagnosed with classic autism when he just turned 3, and a 7 year old that was just recently diagnosed with "high functioning autism" (ie: aspergers's).
We are lucky to live in school district that has an early childhood education program with a specific program for autistic kids, and the kindergarten our youngest will be going to also has a specifically designed classroom for austistic kids. Our oldest is high functioning, and quite verbal and intelligent, but has classic socialization, OCD, and behavioral issues consistent with Asperger's. (I guess we were hoping for a while that he was just "quirky.") We are getting a lot of good help from the school with him too - they aren't just treating him like a problem child and taking out of the classroom, and are offering push in and pull out therapies/counseling.
Anytime you want to share, feel free to post more or PM me!
I have a son with autism. Like you, I focused all of my energy on him. I feel guilty for taking an hour or 45 minutes to workout because that is an hour that I am not engaging my kid.
At 37, I am obese (well almost BMI=29.6). I realize that so many illnesses are caused by what we eat and how much we move. Therefore, I am working through a way to become more healthy so I can care for my kid for a long time--although I am preparing him for a day when HE wants to be on his own.
Something that took a long time for me to comprehend is that my son, even though there are communication problems, social anxieties, sensory issues etc, is still a typical kid inside and needs all the things that typical kids need too- like a way to feel self-esteem and have successful social relationships. We have started doing martial arts together. I don't feel bad now, because we are both learning, coordinating, attending and enjoying a physical art together which is a positive impact on both of our health.
I say these things because I want you to know that no matter how pronounced the symptoms of autism are....your child is typical inside and there will be a day when they want the car keys and their own apartment. Therefore, try not to over-compensate for them or make excuses for them. They can learn and they can take care of themselves. They need things to do and self-esteem....they need pride and diginity.
Our children will want to be independent. I am working toward the day when my child will be able to spread his wings and fly on his own. He is only 11 so I still have a little time. Realize too, that there is no way to protect your child from the ugly side of society. The only thing you can do is prepare your kid to deal with that kind of insensitivity with resilience. Talk to your kid, even if they don't respond they understand.
Don't become a prisoner in your home! Don't be afraid to take your kid shopping or out to eat (as stressful as it is) and don't be afraid to make them eat different things even if they have sensory issues (boy it took me a long long time on that one). If they are never put in the situation to learn ...they will never learn. People around you giving you the look and judging your parenting skills...well they are ignorant of what you are dealing with....they can deal with it for 5 minutes...you have to deal with it a life time. So don't keep your kid from being in social places, grocery store, wal-mart, parks, and everywhere else typical kids go. Don't be afraid to push your kid to do more. Meltdowns come and meltdowns go...but without a push from you, your child will not grow (its the same with typical kids). It is ok if they cry. All kids cry! (I don't even want to talk about how long it took me to understand this one).
Don't be closed minded to new therapies. Look into RDI...www.rdiconnect.com. It is wonderful for our family (may not be right for yours as you are probably more grounded in traditional therapies like ABA, floortime, pecs, speech therapy, OT and meds since you are associated with school systems) but there are new therapies out there --take sometime to check them out.
Last but not least, be proud of your child. They deal with autism 24X7 NO BREAK. Everyday, I thank my lucky stars that I have my child. He is so precious and he is growing so fast. Just to give you an idea of what MY life is like with autism: we go snow skiing every winter (he's better at it than I am), lake kayaking in the summer (he paddles his own kayak with me and my husband), together we do martial arts, he has several awards from swimming and diving, he has trophies from baseball team (he is a part of disabled league), he is training to ride horses in competitions, last year he went water surfing at the beach, as well we play badmitton, frisbee, and baseball in the backyard, and we cook together. Our lives are as full as the next family despite the diagnosis of moderate autism and mental retardation.
I say all of this to encourage you and anyone else who may read this to rethink what it means to be autistic.
Myself, I am a computer geek during the day. I enjoy lots of hobbies in the evenings though (I won't go over them again) perhaps I should mention I am a world of warcraft addict...my child has his own account and computer so do I, we play that together too in the winter when it is too ugly to go out and play.
SW: 137 CW: 129 GW: 111
Thank you for the replies so far everyone. Platinumbutterfly, I have not posted on autism-pdd.net, so it's just a coincidence that someone has my screen name.
My son Eric was diagnosed very early. At 14 months, I referred him for a speech evaluation and he started getting speech therapy at 15 months. The speech therapist was a coworker of mine at the time (I was a special ed administrator). When Eric was 21 months old and had made NO progress (not a single word), I began to really suspect autism. We took him to a nearby teaching hospital with a great pediatric developmental clinic and they diagnosed him. At 2, Eric began participating in half-days at a preschool early childhood special ed program designed specifically for children with autism between 2 and 5. At 3, Eric moved to full days. Early intervention and school services has made all the difference for Eric.
He is a little verbal (more verbal when singing) -- still single words in speech (except when reading - he's an excellent reader), but his greater challenges lie with his behavior issues, lack of peer interaction, and "no fear" when it comes to physcial dangers (cars, stoves, jumping off counters, etc...). He also has a few bizarre obsessions/preoccupations. The good news is that he generally seems happy and he is relatively affectionate. He started calling me "Mommy-Cat" around Christmas (which is close enough to Mommy for me to be thrilled -- we call our cats with "cat" after their names, so he must have picked up on the suffix.)
Right now we are potty training with a goal of having this done by his 4th birthday. This weekend, he did start to say "potty please" when he wanted to go. Hooray!
Congratulations! You are lucky with the potty training. We didn't accomplish this until my child was 7. And...at 11 we are still working on nighttime bedwetting.
Original Post by larienkoci:Congratulations! You are lucky with the potty training. We didn't accomplish this until my child was 7.
We are still working with our 5 year old - he's got some control over urination (he can get in the toilet on command if we remember to take him), but will not tell us, or recognize, when it's time to actually go to the potty. No control, it appears, over BMs, but is starting to show discomfort and awareness when they occur.
So far, we have just gotten run of the mill tips from websites and teachers. If there's anything that in particular worked for you, please share!
my younger brother has Aspergers syndrome, which is a form of autism. we only found out about a year or maybe 2 years ago. he's almost 16 and has been struggling with school for a long time. he's doing much better now with anti-depressant medication and his sessions with a therapist. we got him into a high school which has a very good special education program (the last high school wouldnt make much of an effort to help him). He also suffers from Disgraphia, which pretty much means he can't write, though he can read and knows what words look and sound like, but somewhere between the brain and the pencil, something gets lost and he has a hard time writing. Luckily the new school gives him a laptop for school work.
I certainly knew something was up while she always thought "Cole is just being Cole". I figured it might be that he was mentally slow due to his inability to pick up on social behavior like knowing when he was being made fun of. The fact that he was actually very intelligent though didnt mesh with the concept though. After learning of the diagnosis and reading of the condition, the other symptoms all fell into place.
He's an amazingly endearing guy and I realize how easily this went undiagnosed through the school system. Thankfully both it and autism are getting overdue attention to best help these individuals be diagnosed. I still consider it one of those things that doesnt come up in conversation but if you talk about it someone knows someone dealing with situation the condition becomes increasingly identified.
I've gone back to re-read (and re-read, and re-read) the posts in this thread. I really feel so lucky that I was persistent with getting early intervention services for Eric. The extra added bonus was that after his first year in the autism preschool program, his special ed teacher retired (which was sad because she was phenomenal). Then, because I was a school administrator, I knew that one of the SpEd teachers I supervised was really interested in autism, had experience with autism AND was getting her Masters degree in early childhood special education. I convinced her to apply for the job and she got it. So, every day that my Eric is in school, I am confident that he has the BEST teacher he could have. In fact, I really give her and the aides credit for our sucesses with potty training so far. Last week, they changed him every morning from a pull-up to underwear as soon as the bus arrived at school. They also loaded him up with orange juice mixed with water (his favorite drink) and took him to the bathroom every 15 minutes, praising him and dancing every time he peed in the potty. He had several accidents the first 2 days, but none since then (except for poop...he's never pooped in the potty). His speech therapist has been working with him on saying "potty please" and using a PEC (picture exchange communication) symbol for him to indicate need to use the potty. I also found out that our after school babysitter has been working extra hard also and gives him one raisin every time he goes at her house. He still wears a pull up at night. Part of the reasoning behind that is that I am really worried about giving him access to the bathroom at night while my husband and I are sleeping. I'm worried about him playing in the toilet or drawing himself a bath in the middle of the night (a major safety hazard).
Some other things we struggle with: 1) going out to eat - Eric "screams" when he's happy and I don't want to disrupt others yet I feel he has a right to be there too. 2) He's also a SUPER picky eater, although he does better at school when he sees lots of other kids eating the same food (we buy him a yucky school lunch only for this reason). He loves yogurt, raisins, organic fruit "leather" (no added anything!), waffles, bread, chicken nuggets (ew), goldfish, bacon, honey nut cheerios with milk (won't drink milk seperately) and fiber one bars (weird for a 3 year old). Once in a blue moon he will eat cheese. He won't eat fresh produce, but get this...he loves low sodium V8 juice! 3) self-stimming behaviors - Eric rocks and spins a lot. We actually bought him this zebra sit, bouce, and spin toy-thing thinking it would help. The doctor said it would just reinforce his behaviors, but we have found the opposite. He spends 5 minutes on it every morning and every evening and this had GREATLY reduced the time he spends rocking and spinning on the floor or furniture
Some things we are so very excited about: 1) Eric can recite his phone number (a great safety thing) 2) Eric is a natural swimmer 3) Eric gives hugs and kisses without prompts (I cried many a night fearing he would never do this) 4) Eric can read (decode) pretty much any word he's given, although he doesn't comprehend most of it 5) Eric is generally a very happy child...this list could go on, but I'll stop there.
When he was first diagnosed, I was sad, but also very angry. I know this sounds very silly and immature (and I am over it now) but at the time I was really angry at God. I had devoted my career to working with special needs students, as a teacher then special ed administrator and now principal of a school. I thought that God was being unjust by also giving me the opportunity to parent a special needs child...where was my "get out of jail free card" based on my career choice. But then I realized that God knew I could handle this and that Eric would be a good match for me and that he would teach me to be a better parent, educator and human being.
Thank you again to all of you participating in this thread. It's so easy to feel alone in these situations and, as we all know, every child's situation is different. However, the support and understanding is very much appreciated.
Rachel
My younger brother was diagnosed with Asperger's at 21 -- yes, 21 years old. We didn't even have any clue what might be wrong until he had graduated high school. We had some very, very rough patches when he was in middle and high school and no one really knew what was going on. The worst was when he was misdiagnosed with ADD and given Ritalin. Ritalin apparently makes autistic kids psychotic and he ended up in the psych hospital. Despite having genius-level intelligence, he was awful at school and very very bad socially.
While he is definitely high-functioning and now has a diagnosis, treatment, and a job, it's so sad to think that my brilliant brother is working basically a janitorial job and may never be able to go to college.
And completely on the selfish side, I'm terrified of the chances of my own children having autism -- maybe even true autism and not Asperger's. Autism has a genetic component, and it's even more likely if both parents are in technical careers -- which my future husband and I both will be. I can see little bits of my brother in myself, even though I don't have Asperger's, and I just worry about my future children.
Edit: One of my biggest consolations is that the research and understanding of this condition is SO much better than it was even a decade ago. Maybe in five years when I have children, they will even have a vaccine. I can hope, at least!
Original Post by santonacci:Original Post by larienkoci:Congratulations! You are lucky with the potty training. We didn't accomplish this until my child was 7.
We are still working with our 5 year old - he's got some control over urination (he can get in the toilet on command if we remember to take him), but will not tell us, or recognize, when it's time to actually go to the potty. No control, it appears, over BMs, but is starting to show discomfort and awareness when they occur.
So far, we have just gotten run of the mill tips from websites and teachers. If there's anything that in particular worked for you, please share!
Rewards based training works for a lot of folks, but it didn't work for us (I think someone said that their kid gets a raisin or m&m for each successful potty venture but that kind of rewards based system failed in my house). My son gained control over urination before BM as well, I'd say by the time he was 6 the urination was pretty much a done deal but the BM took about a year longer. The only thing that worked for us was I would go into the bathroom with him, sit on the floor and read a book to him. Yep, as disgusting as it is, as a mom, I was willing to do anything! Not only that, we established a pattern where right before a bath -he had to try to go. I would prompt him a lot while I was reading..actually I may even have sounded like a cheerleader..."come on you can do it, make your tummy feel better" then at success "you did it, hooray!" He learned quickly that he couldn't get up until I was finished with the book. This taught him to sit there for awhile even if he wasn't actively doing anything. Then somewhere around age 8, we found out that he LOVED comic books. I have 100s laying around the house! So, I started giving him a comic book while he was busy. At first I had to stay with him and continue to be a cheerleader. Eventually though, somewhere along the line he started telling me to "go to your room mom" while he was busy. I admit I still tell him to go sit down on the potty right before a shower. He will go in, grab a comic book and sit down. Later, I will hear him stirring around and know it is time for a shower. I will go in now and say ok time for shower and he will get in the shower and he is 100% responsible for showering and washing his hair. I am working on giving him the responsibility to move from BM to shower alone.
As for bed wetting, I kept him in pull-ups until a few months ago. I seriously didn't know how to potty train at night. It became a struggle for me to get him to wear the pull-up so I was going in after he fell asleep and putting one on him. At some point, I just decided the heck with it he is 11 and should be able to go to the potty. I used the last pull-up and didn't buy anymore. I was set for nightly accidents and armed with a plan to buy a new bed when the ordeal was over. To my greatest surprise, we have only had 5 night time accidents in 4 months and that is only on nights where I allow him liquid an hour before bed. So, we no longer give more than 2 oz of liquid 1 hour before bed and took away the night time drink. Viola, he is keeping himself dry. Before we go to bed, we wake him to go to the potty. After that, he is good for the night. I am working on the night when he will get himself up to go on his own--that is next phase!
My younger sister was diagnosed with severe high functioning autism when she was a teenager. We had known for years that there was something different about her, but unfortunately we didn't have as many treatment options or awareness when she was a kid. I wish that we had some way of getting her more help when she was younger. My mom did manage to get her into intensive speech therapy at a young age, and it probably helped more than we'll ever know. I am only four years older, but I worried about her all the time. She had the characteristic lack of fear and I remember having nightmares that she would run into the street and I wouldn't be able to stop her. She also had a lot of anger and depression as she hit puberty.
Shimmercat - I struggle with the same dilemma. I don't really think that I want kids anyways, but I am also terrified of the genetic component. I adore my sister, but I feel like I've helped raise her and I still spend so much time worrying about her now that she is an adult. I don't think I could handle having a child with the same difficulties and go through it all again as a parent. I am paying attention to the research they are doing as well.
Hi guys. This thread has moved from The Lounge to Health and Support at the recommendation of one of the volunteer moderators, and I thinks that's a great idea.
So your comments, experiences, frustrations, joys, and silly stories are all welcome here. I'll try to post some of our funny experiences -- sometimes laughter really is the best medicine.
One of the funniest (but also frustrating) things about my sister is her inability to generalize. I don't even know how to express this, but she has to learn every rule individually. She cannot learn a general rule and then apply it to different situations.
Once she ate the entire crust off of a pie we had in the refrigerator (she was a teenager at this point, not a toddler). Naturally, the rest of us were a little frustrated and we had to have a long conversation explaining why it isn't polite or considerate to do something like that. A couple weeks later, she ate all the crust off of a pizza! When we reminded her about the pie lesson, she couldn't understand why we thought the two situations were even remotely similar. Agh! Her brain just works differently.
As a little kid, she hated wearing clothes. To the point that if you left her alone for a few minutes in public, you would look over and just see a trail of clothing and you knew she was somewhere in the store, naked, and probably trying to talk to strangers. She had lots of impulse control issues.
What has been great about having a sibling with autism is that it constantly reminds me to allow people more space just to be themselves. We live in a world that isn't very accepting of people whose brains work a little differently, and I just wish we would allow people to be a little different without punishing them. What also kills me is the stigma. My sister actually had a counselor tell her that autism was a "California hippie diagnosis" and that it wasn't real. He told her she had PTSD, even though she has been the way she is since she was a toddler. I wanted to strangle him. Granted, this was years ago and it seems like things are getting a little better.
Okay, long post. But I do like the idea of also sharing silly stories along with frustrations.
I'm a mom of a 22 year old son with Autism NOS. He was diagnosed in Kindergarten and has received services through out his life. He graduated High School right on time. He is wonderful with Greek Mythology. He has little to no perception of time and money, although he knows he can spend it, cant count it. His biggest struggle has been social. He struggled his whole life trying to figure out the whole interaction stuff. He often would resort to humor that worked until he reached junior high. He is a very compassionate young man. He love young children and the elderly but struggles with his peers.
He currently hold a job at a convience store stocking coolers. He participate in Self Advocacy and Peer Groups. He absolutely knows what he wants from life but hasnt a clue what to do to get there. He is on medication for anxiety that caused him to put on a bit of weight. Now he's trying to lose it and its a challenge. He thinks if he drinks water then he's doing ok, never mind the snacking and other junk.
Overall my experience with him has been very educational. It led me into a career of Support and Advocacy. In the past I worked with the birth to three program where children were evaluated for learning disabilities. It was the next to the toughest job that I could ever love. I am now starting to work with adults with disabilities in a national program. I took a four year break after the first program thinking I needed it. Now I am ready to get back to the work I love. Helping those who have challenges, help themselves.
I rant on because I want you all to know that this is a blessing not a curse. Our children are our lives. They take us places others couldnt imagine.
I leave you with a poem that really says it all.....
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland
Rachelcc, thank you for sharing your insights as a sibling. When Eric was only 7 months old, well before his diagnosis, I joyfully became pregnant again. While I have no regrets about having Eric's brother at all (never have and never will), I sometimes ponder what it will be like for him to have a brother with autism. They will be 2 years apart in school and are 16 months apart in age. I am really happy that we have the two boys so close in age. Having a similar-aged peer to learn social skills with at home and in the community has really been helpful to both of their developments. When little brother gets older (school age) I will be particularly attuned to making sure he has supports that he may need.
Funny/weird story about Eric...when he was little, he had no interest in a "lovey" like a blanket or teddy bear. However, beginning at about age 10 months he had a strange fixation with a bottle of Elmer's glue. We let one dry out completely and he carried it everywhere he went. While we wouldn't let him sleep with it in his crib, he would have a huge tantrum unless it was on the dresser in his room where he could see it in the glow of the nightlight.
Story about generalization issues...as a SpEd teacher, I once worked with a child with high-functioning autism who tended to OVERgeneralize. In a classroom activity on fire safety, we were teaching about fire/rescue, and 911, etc... During a closure activity, he was asked "what do you do if your neighbor's house is on fire?" He responded "call 911." We asked a similar question for other scenarios involving fire and 911. Later that day when students were being picked up from school by parents, he looked out the classroom window and saw a parent smoking a cigarette by her car (a big no-no on school grounds) he immediately shouted fire and ran to the classroom phone and dialed 911. Ahhhhhhhhhhh. He never said anything to the operator other than fire, but then one of the aides got to the phone to explain. Unfortunately, however, policy requires that the fire department still come out to investigate when a 911 call about fire is made.
