Announcing BBB Autism Buddies!
Are you looking for one to one support from another parent who has been there already?
Are you grieving over your child's diagnosis, and are unsure of what to do next?
Do you feel that none of your friends or family understand your situation?
Are you anxious to know if things will get better?
...and while all this is going on, do you feel you are you tied to your house, unable to work outside the home and/or visit friends
Are you willing to share your own knowledge and lend an ear to someone seeking support?
Hi, my name is Diana. I have 3
children. My two sons have autism. Alex is 7.5 and Todd is 5.5. My daughter is 9
and a wonderful big sister to her special brothers.
Alex and Todd have both been involved with the IBI program here in Ontario. Alex had a year of service and Todd is going into his third year. Alex is in grade 2 at our local school, integrated in a regular class. He has an aide but it has still been challenging for everyone to make that included situation work, but it is going fairly well. Todd will be starting school in March at the same school. It will be exciting and scary at the same time.
Todd is non-verbal and uses a voice output device to communicate as well as PECS when needed. Alex has some language, is echolalic. We are still dealing with toileting issues with both boys.
My boys are really sweet and good natured kids, and that is what gets us through the days. It is challenging having more than one child with autism, but we manage to truck along. We are looking forward to getting a service dog this year for Todd. We feel that will take some of our stresses and fears away.
I love being on the computer and supporting other parents. I hope I can be of help to someone just starting out. It is fresh in my mind what it feels like, and we have been dealing with this for over 4 years now.
I have a 13 year old son diagnosed with PDD-NOS. He received a wrong diagnosis at the age of 2. He was counting and reading at the age of 3. He received the PDD-NOS diagnosis just before his fifth birthday. He is in a regular classroom with his peers with the supports he needs to handle the stress of the classroom and keep him on task.
I have been involved in my local autism chapter since around 1992. I am currently president of the chapter. I have sat on my local school board's SEAC for many years (I think around 7). I continue to represent Autism Society of Ontario on SEAC (Special Education Advisory Committee).
I am mom to an almost 5 yr old boy who was dx PDD-NOS with mild MR at 3 yrs old. He was recently dx Asperger's Syndrome, which we feel is a more accurate dx for him. He is very bright, social, and loving. he has a sister who is 19 months old, and exhibiting sensory issues and obsessive type behaviors. She reminds me a lot of her brother at the same age, which worries me . She is going through Early Intervention because of a surgery she had that puts her at a higher risk for developmental delays, and we are just getting an evaluation by an OT for her.
My son's dx came just a few weeks before my daughters' traumatic birth, so I kind of shoved the whole thing aside when she was born. It took me about a year to really start dealing with it, and finding out information, but now I feel like an expert. My son is mainstreamed in a Head Start class with a full inclusion aide, gets speech, OT, APE, and play therapy, plus transportation and a home behavioral program. His program is very tailored to his needs, and a very good program.
We have been using a local advocate, and I feel now I am almost at the point where I am beyond needing her help. I have become pretty good at navigating the system, and I would love to give support to someone with a newly dx child, or anyone else in need of support.
Hello! My husband and I have six children, and they all fit on
the autism spectrum somewhere. It's an interesting life! My message here is long, so sit back and enjoy. LOL!
My oldest has ADD, but other than that he is a typical 12-year-old. He struggles with organization and turning in homework on time. Swimming seems to be helping him feel better.
My second son is 10, and has been diagnosed with mild Asperger Syndrome. (I don't agree with the diagnosis. I think true autism would fit better.) I knew he had problems by the age of 3, but we didn't get a good diagnosis until he was 7. It was a frustrating time. He went through the public school special education preschool program, which was wonderful! He is currently in a regular 4th grade classroom with some pull-out help and accommodations. He is a great reader! He still has trouble with stereotypical behaviors and social issues, but otherwise he does just fine.
My third son is an interesting mix. He has mild autism, moderate/severe ADHD and digestive issues. Sometimes his brain seems to be at war with itself...his autistic side craves routine, yet the ADHD side gets bored of "the same old thing." Somehow he still manages to be a wonderfully intelligent child. He has an IEP at school and is on daily medications to help him deal with life. He has an angel of a teacher right now, but that wasn't always the case. It has been a struggle to
raise him so far, and I am sure our troubles aren't over yet. Still, he can be a charming, wonderful person...if you know how to handle him. Pretty complicated for an 8-year-old, isn't he?
My 6-year-old daughter has not been diagnosed, but she will be this summer. She has speech delays, sensory difficulties and social issues. Even so, because she is such a "good little girl," she hasn't needed that much help. She just hasn't had
that bad of a time...yet. We expect that to change in the next year or so. She is a wonderful sister.
Our 4-year-old son has been diagnosed with mild/moderate autism. He is currently enrolled in special education preschool classroom where he gets OT, speech, self-help and cognitive therapies. He is doing so well, they expect him to go to a
regular Kindergarten class in September. He is an artist and thoroughly enjoys music.
Our youngest daughter is just about 3 years old. She has several chronic health issues, so we find ourselves being a little more paranoid about her. We have noticed some autistic behaviors in her lately, which adds to our worry. She has developed some sensory issues, and her play has become more obsessive in nature. She just isn't as cheerful as she used to be. It is hard to watch sometimes. We don't want her to go through anything else...she has struggled so much already!
Still, if she does have some problems, I guess this is a good family for her to be in. We've all "been there and done that."
Our family uses a homemade PECS system with great success. We have a big Velcro board on our front room wall for schedules and activities. We have also tried the Wilbarger protocol with our 3rd son, and it really did help. We have experience with medications, therapies and evaluations relating to autism. We also deal with asthma, GERD/reflux, hereditary pancreatitis and other health issues.
I would love to talk with others. If any of my children's stories sound familiar, write me...I like to be of help if I can!
Hi! My name is Michelle and I live in NJ. I have 3 boys - 2 who are on the autistic spectrum. But I will explain about Brian because I have been through so much with him.
Brian was diagnosed with PDD/autism when he was 22 months old. We knew
something wasn't right -- our oldest son had been talking so much by this age and
Brian would not listen (We thought it was his hearing at first) he would scream and
rage and bite.
When we heard the word Autism - we were in shock. I didn't believe it. The doctor had to be wrong. I was a wreck. We went to our first and last autism meeting the day he was diagnosed. I wanted to jump in and figure out what we were in for. I couldn't believe that the people in the support group were laughing and bragging about their kids -- didn't they realize that Life would never be right again???
We got Brian into a full day program where they also had the early intervention. They taught him how to sit, how to sing songs, how to eat with a spoon and how to get along with other kids. At home he was a nightmare LOL - biting, screaming and hyper as could be.
When he turned three, the child study team were very negative about him and his progress and put him in an ABA program. They didn't have much hope for him at the time and were very condescending towards us and towards him. Life was bad.
Then we moved to a different part of NJ. All of a sudden -- there was hope.
The child study team was on our side (We were shocked) They put him in another ABA based program and he started to flourish (between 3-5) His speech started coming along nicely and his behavior issues were addressed by a behavioral therapist. Each issue was given time and thought and they told me what to do at home and they worked on it in school. Brian kept moving up from one class to the next and at the age of 6 was mainstreamed with an aide into regular Kindergarten. That was last year. He has done so well since then -- now he is in reg. 1st grade with an aide and getting super grades. We added medicine last year (Prozac for anxiety and social issues) and Clonadine for the hyperactivity. No one believes that this is the same child as 4 years ago. He has grown so much physically as well as emotionally - we are amazed everyday by him. He is the light of our life.
I have grown emotionally as well. Brian made me a different person too. I don't take things for granted as much anymore. I have learned not to
take the "little" things in life too seriously anymore and I have developed a Quirky sense of humor that matches everyone else in my family. LOL.
Remember I said I went to that meeting and thought that those people were crazy to be laughing and telling odd stories about their kids? How could they ever laugh again when life was pretty much over? Well, I am one of those people now. I tell the crazy stories and laugh and brag about my kids constantly. Its funny how life changes you.
The thing that changed me the most was meeting a bunch of people on the BBB board and forming forever friendships with so many of the members. Meeting a handful of them was so exciting and we had such a bond -- like we were friends forever. The Board is a great way to meet friends with common issues whether they are bad, good or funny. If you ever need to talk -- please page me or email me - I know what you are going through and would love to talk if you need to.
Hang in there everyone!
there, my name is Deborah. A little history of our personal victories and losses
I believe is in order. My husband and I have 2 darling children. Our 7 year old
daughter is what is known as NT in the autism community (NT means neuro-typical
or typical development). Our son was diagnosed 5 days before his 3rd birthday in
August 2000. He was classified as high functioning all though that is in
no way any kind of an official diagnosis, it's used to give parents some kind of
gauge of where to start I think and also to get them through the initial phase
the present time JR (short for Junior not John Ross if you never watched Dallas
then I am getting really old!!! LOL) receives
a total of 40 hours a week in ABA therapy. Ten hours is in a specialized (just
for our autistic gems) classroom and the balance at home with trips into the
community (when weather permits BTW we live in PA). He was also getting outside
speech but his speech therapist took another job that I think will be of more
benefit to our kids. There is a new autism school opening up in the Hershey PA
area where he will be. So JR will be without speech for several weeks (months). We
have recently (about 6 weeks ago) started JR on vitamin and magnesium therapy.
The improvements have been so dramatic it was a shock to watch at first. These
vitamins do what they say they do. He's calmer, more focused, less irritable,
acquiring more speech.
We believe that JR
suffers from "regressive" autism and we also believe it was
triggered by vaccinations. We have two websites that may be of interest.
Our Homepage link is: http://the_delps.tripod.com/ and
our Group Page link is: http://groups.yahoo.com/group/autism_and_vaccinations.
The homepage has many links to many different sites some support others
educational. Feel free to browse it but give yourself some time there is a lot
there. The group pertains to education more than anything else. Education on
vaccines and their dangers. We believe this is an issue that needs to be
addressed at the moment (but hope someday to be able to do away with that group)
and that the medical community (for reasons I will keep to myself for now) is
not doing its job of informing consumers (parents) of the ugly side effects
(autism being only one of them) of these vaccines.
enough of my soapbox. Sorry vaccines and awareness are two of my pet projects
LOL. At any rate feel free to contact me with any questions that you may have.
Always here to help.
I am the mother of 5 children, one of which is severely autistic and
one that is currently being assessed for autism. Our family is actually
a blended family, my husband has two children from his previous marriage:
a daughter (who lives with her birth mother), and a son, who lives with us.
He is autistic. I have two girls from my previous relationship as well,
and we have two children together. Our 20 month old is the one being
assessed currently for an illness in the autistic spectrum. Our 7 year
old is completely non verbal and using PECS for main communication
tools, he has a hard time with them. He is not toilet trained but we
are actively trying to change that. He is a very pleasant child that has
somewhat overcome the withdrawal aspect of autism and occasionally looks
for a hug or cuddle from ones he knows best, he is our proof that
autistic persons are capable of love and need it in return.
I have learned so much from this little guy, I'd miss him if he was
"normal", he sees our world so differently and enables us to see it
differently as well.
Our 20 month old displays many autistic behaviors: speech delay,
fine\gross motor delays, temper tantrums (beyond age appropriate),
rocking, withdrawal, lack of eye contact occasional, lack of interest,
obsessions, antisocial behavior, and more. She is delayed from 4 to
6 months in development, thus she is being assessed. The biggest and
only fear I have about this diagnosis is "losing her". She is so close
to us right now, I fear that would disappear. The rest I could handle
as I already live it everyday. I was not in my stepson's life until he
was 4 years old. Since then, we have a great bond, he and I .I would really
love to be able to talk to others like me, it feels good to know there
are others out there that truly understand.
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Please note: If you are
experiencing any of the signs of burnout, please ask your doctor to refer you to
a professional for counseling.
Short Attention Span
Upper Back Pain
Sense of Powerlessness
Stiff Neck or Shoulders
Sense of Worthlessness
Shutting off from friends