Looking for Support from Other Moms Dealing with High Functioning Autism

T.,
Hello. I too have a son with PDDNOS and ADHD. I don't know a whole bunch, but I might be able to answer a few questions, or at least try!
~A.

hi, T.
this is so weird, i originally saw your post because i also have a son loosely diagnosed, pdd-nos. hes 4 and is in an integrated program as well. but what struck me is you have 3 boys almost my 3 boys ages (i have 7, 4, and 2) and we are actally in westampton. we used to live in eatsampton and just moved this summer. is your son at jaques school? we have the same major issue, the disipline. but i feel like if justin could express himself better it wouldnt be so hard. is your son verbal? i hope to hear back from you, i think it would be great to know someone going through the same stuff, especially so close in location.

I am with you all the way. I have one of my triplets with PDD and the stuggles never seem to end and you never seem to know when they are going to hit. It is very hard now that they are eight and her siblings seem to notice that their sister is "different". Her teachers have said that her stoic expession makes it hard for other kids to approach her. Her social interaction is very immature. The obsessive behavior can just about drive me over the edge. She has at least 10 blankets on her bed that all have to be put on her bed in a certain order, she has never made eye contact. She is a auditory learner but gets hyper stimulated by the classroom noise, so we have added an auditory trainer to her IEP and it helps a lot. I can't stress enough to be very proactive with your childs IEP to get what you need. Terin gets OT, and speech plus has a special Ed teacher in her room and a pera-pro and many other things like having test read to her and extrea time. If theres anything I can do to help feel free to email me ____@____.com

I am a loving mother of a 2 year 9 month old son who has also been loosely diagnosed with high functioning autism. He has been formaly diagnosed with a sensory intergration disorder. Unfortuantly for him, he has not been able to attend OT for 3 weeks now. He has been very sick and his behaviors have been the worst we have ever seen! We actually pulled him out of daycare in the early summer because the discipline was such an issuse. He spent the summer with my sister and is now spening some time with his mam-maw(grandma). We do have him enrolled in a pre-school that he will attend a few days a week, if we can get his behaviors under control after he sees his GI next week for a third endoscope and a first-time colonoscopy. I would not change him for the world, but I wish he could process the world around him bettter. I am happy to know that I am not the only mother dealing with this. I am happily marries and this is and will be my only child.

Hi T.,
I am a mom of an 8 year old daughter also diagnosed with Pdd/Nos or autism spectrum disorder. Your story rings bells with me!
My daughter was diagnosed at age 3. She attends a school in Baltimore that specializes in children with autism and other developmental issues. We also struggle with discipline issues especially at home. If my daughter doesn't get her way she can "tantrum" up to an hour or more. Screaming, crying, rolling on the floor...she actually broke our kitchen window yesterday during one of her episodes.
Does your school offer psychological help or behavioral therapy? If not, I'm sure his counselor or Social worker can recommend a behavioral therapist in your area.
I live in Baltimore City and am enrolled in The Autism Waiver program. I'm sure that the program is nationwide. Believe me, they have been a Godsend. Even though my daughter has a behavioral therapist at her school she still has issues at home that she does not display to school. The waiver program has referred a behavioral therapist that works with us at home also. The good thing about the waiver program is that you DO NOT have to be destitute to qualify. They offer services for all children with autism. Please look them up in your area.
Feel free to contact me anytime. We are both going through this together and I would love to chat with you.
Best wishes,
D.

Discipline is hard for a child with autism. I found out the hard way. My son receives intensive therapy through Western Pysch. If your son does something wrong you tell him NO and why he shouldn't do it. When he throws a tantrum (and they do frequently) you do what is called extinction. Totally ignore the behavior and even leave the room if necessary. Its the hardest thing in the world to do, but they will eventually learn that some things aren't ok to do. If you have any other questions please feel free to ask, or you can grab a book from any major bookstore called "The Autism Sourcebook" best book I have ever bought.

Hi

Let me introduce myself my name is C. I am a single mom living in Cumberland RI who has a daughter who is turning 13 in a week who was diagnosed with PDD-NOS at the age of 2yrs old. We have been up and down on the roller coaster ride called Autisim. The best advise I can give is make sure your school is attending to the other needs which included speech, occupatioal therapy. In RI we recieve Katy Beckett(Medicad) for these services out side of the school which is not available in all states. Behaviors at home can be harder some days. I am in the process of changing my daughters placement outside of the public school as I feel they are not covering her needs at this time. Last but not least read, read, read. There is a ton of great information and groups out there waiting to help you. Autistic children can test your limits but they are the most loving and beautiful children in the world.

Hope this helped.

My son has PDD-NOS and is in an intergrated preschool as well. We should talk sometime maybe I've thought of things you haven't or vise versa.
I understand what your going through.
A. C.

My son is 2.75 years old and definately on the spectrum, but moving up. We have been receiving state services for 4 months. He has lots of sensory issues and his OT has been great in helping us work through them. Perserverence is the key. The first time he sees something he doesn't like, there is a total freak out, but every couple days we keep introducing it in very small ways. Over the past few months, he has come to do/tolerate things that I never thought possible. OT is really hard for him, so it is always followed with some down time. Last week we worked with wet sand and he is still needing some space. We are now beginning the process of working on his attention span in preparation for the transition to preschool. I can't speak much to the program, but we are using a timer & forcing him to stay focused on an activity until the timer goes off. If you want to know more, feel free to contact me. With regard to discipline, I find that my biggest problem is figuring out when the tantrum is autism or just a two year old. Honestly, I was thrilled when he first started demanding things from me because he was talking! - so, I gave in to everything. I also was happy with the tantrums because it was so much more normal than the vacant staring that used to fill his days. I have found that labelling the emotion and finding an outlet has helped. When he starts to tantrum, I get down on his level and I tell him, "you're angry" and, "how can I help you be happy". Sometimes he just gets angrier, sometimes when I label the emotion he just stops?, and sometimes he will tell me that he wants a hug, or a blanket, etc. I hope this helps.

Hi T.,
I have an 8 year old daughter with PDD-NOS, Sensory Integration Dysfunction and ADHD. It has been a tremendous learning curve for all of us, and it continues to change all the time. Just when we feel like we have a grasp on something, it changes.

Disipline is a hard one. What exactly are the issues? Is he having meltdowns?
I would love to chat about this and help if I can.

Blessings,
T.

HI MY NAME IS T. AND MY SON ZAKARY HAS HIGH FUNCTION AUTISM. EVERYDAY IS A CHALLENGE FOR ME. HE HAS SOME BEHAVIORS THAT MAKE IT HARD TO DEAL WITH. FOR EXAMPLE WHEN WE ARE OUT IN PUBLIC HE THROWS TERRIBLE TEMPER TANTRUMS. PEOPLE ALWAYS STARE AND I GET SO EMBARRESED. HE HAS BEEN ON TWO DIFFERENT MEDICATIONS AND NOTHING SEEMS TO WORK. ZAKARY IS FOUR AND I HOPE ONE DAY HE CAN OVER COME HIS PROBLEMS AND LIVE A NORMAL LIVE.

Hi! This is actually from my sister-in-law. Her son was diagnosed with high functioning autism, and I forwarded your request on to her. Here is her response:

Hi there! I have an 8 year old son named Mitchell. We were told that he fell in the Austism spectrum, when he was 3 �. However, like you, we never got a true diagnosis as to
where on the spectrum or what exactly he had. About six months ago, we were given the diagnosis of Aspergers. (AS). AS falls on the high functioning end of the spectrum. Mitchell is also considered to be a mild case so he
doesn�t exhibit all of the more common symptoms of AS. At least, a lot of them are not noticeable until you spend a lot of time with him.

We are very fortunate to live in a very good school district that supports ASDs. Mitchell is doing very well in school with a lot of support from the professionals and teachers. My best advice for going to school is to work closely with the school. Seek out those that will help your child and work
with them. If there is a sense of team work between home and school, and your son sees this, he will do better.

I know it can be frustrating not to get an exact diagnosis. I have definitely been in those shoes. There were many nights that I prayed that it would be something simple like ADD. I was told from the beginning that a true diagnosis wouldn�t come until he was around 7 because before then,
children are developing so rapidly that they simply can�t tell what is going on exactly. When we got the autism diagnosis last year, at first I was relieved just to be able to give it a name. However, later I was devastated. Suddenly, everything that I had hoped and dreamed of from when
Mitchell was born, came to an end. I was faced with so many questions: Will he live a normal life? Will he ever make friends? Will others ever be able to understand?

Being a parent of a child in the spectrum is exhausting. I am constantly questioning myself. Am I doing enough? Am I doing the right thing? Am I supportive enough? Am I standing up for him enough? Protecting him too much? Sometimes I want to scream and I cry and wish I had a �normal� child.
Most days though, I accept the challenge and everything is fine. Mitchell is a very smart, funny, creative and loving boy. I couldn�t imagine him any different. Sometimes I even think I am lucky to have him the way he is because it has opened my eyes to so much.

Some of the hard parts of having a child in the spectrum is having to deal with everyone else. The people who think you let your kid get away with everything because they have a tantrum or misbehave. The stares from strangers or complaints from family members. I have seen it and heard it
all. Sometimes I talk back and let them know why he is behaving this way and why it isn�t as easy as giving him a timeout. Sometimes I just leave, take him with me and end up feeling like a horrible parent. I have some
family and friends who are very supportive and others who think that the autism spectrum is a crock and just some new way to give bratty kids an excuse.

Some advice I can give you would be to do a lot of reading. Take on the symptoms you know about and read, read, read. Forget (for now) about the actual diagnosis. One of the BEST books we read was The Explosive Child by Dr Tom Greene. It truly changed our lives and helped Mitchell
tremendously! Also, your son may be Sensory Sensitive. This causes children in the spectrum to react to outside stimuli that normally wouldn�t bother us. If your son is like this, figuring that out and treating it will make a HUGE difference in his behavior. A great book is called The Out of Sync Child by Carol Kranowitz. If you read it and it sounds like
your son, you can take him to an occupational therapist for a Sensory Evaluation. If they diagnosis him with sensory integration dysfunction, then they will set him up for occupational therapy or give you exercises to do at home. This is called a Sensory Diet. It is basically just activities and routines that your child does that will help him cope and reduce his aggravation, over activity, anger etc. My son can get very silly and this is very helpful.

Autism Speaks is a great resource. They have a great website.

I could go on and on but you are probably already verwhelmed! Here is my email address ____@____.com
feel free to write if you have more questions or need any info etc.

Take care and good luck! Beckie

my name is A. Goldstein im a educational consultant for discovery toys.Disovery toyshas wonderful and educational toys for children with sensory issues and toys geared for autism. If interested in a catalogue or you can check out the website at
www.discoverytoyslink.com/AliciaGoldstein
discoverytoy is now having their winter sale 62%
the autism kit is now on sale it comes with 10 toys

We have a 9 yo son who was diagnosed ASD when he was 25 months old. One thing we've come across is called behavior modification. You need to find a TSS worker...they're kind of like Super Nanny. Someone will come into your home, go shopping with you, help with bed time or whatever you feel is the most difficult situation you have. They'll spend about 6 weeks with you and teach you how to best handle your most difficult situations. Good luck to you. I know how difficult things can be...I wish your family the best!

B.

How did you get your child into an integrated preschool? I have been trying sooo hard to do so, but the school dept. in Providence RI has only been showing me isolated autism preschool programs and has expressed that I must try them in order to recieve their financial assistance.....

I know I am really late responding to you.... but I am currently doing my thesis on The Autism Spectrum and Treatment options. There is a really great website, www.kylestreehouse.org, it has all the treatments listed in categories along with the pro's and con's and links to their specific websites. It is a really great resource!

I work with special needs children. I think the best thing for dealing with day to day activities within your home is to work closely as a team. What I mean by that is try as much as possible to be involved in what is going on at school and try to do the same at home. Your son may even qualify for wrap around services, where a thearapist is able to come into your home and work with him. Check into all the resources you can and be an advocate!
I know it can be tough, but stay strong!