Orla - posted on 10/09/2009 ( 40 moms have responded )
can anyone offer advise on what i should do
Orla - posted on 10/09/2009 ( 40 moms have responded )
can anyone offer advise on what i should do
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Sophia - posted on 09/09/2012
Find a very good daycare for children with special needs. They will give you lots of support. Please know from now on you must learn to fight for him always , as well as teach him to fight for himself. because its hard when they can't fight for themselves. I still have my why me times..... but I also have many many why not me times too.
Suzana - posted on 06/17/2010
i agree with what everyone else has said,but in saying that,dont forget about yourself in all of this,its so much too take in and your going to have days where you think"why us,why my baby" and thast normal and you shouldn't beat yourself up over that,if your having a bad day,just remember it will look a whole lot better after a good night sleep,i sitll have days like that nearly a year after lucas' diagnosis ASD,my husband died of cancer just after luke turned 1,and i still have those"why me" moments,but it does get better,the best advice i can give you is dont over think it too much and remember autism or not,your child is still a unique person with something very special too offer this world,i think sometimes if we try and fit into their worlds instead of trying to push them into ours,we woould see things much differently,also ABA therapy has been so successful with lucas,i highly recommend giving it a try-good luck and stay strong.
Laura Dean - posted on 06/15/2010
http://www.autism.com/index.asp God bless!
Erica - posted on 10/19/2009
go to www.autismspeaks.org and order the 100 kit as soon as u get a chance. It is the best thing i have ever done!
Claire - posted on 10/16/2009
They probably have said all the things that you need to know. It's quite overwhelming but take it one day at a time. Always remember that special children are given by God to special parents. He knows that you can take good care of His little angel. Be glad and ask for his guidance always.
Kecia A. - posted on 10/15/2009
Get educated about the condition. Follow your intuition. Don't be fearful; you're not alone, I have a 9 year old diagnosed at 3. Use herbs & a healthy diet but make sure you've done your homework.
Heather - posted on 10/15/2009
Hey there! So I see you just got a diagnoses! My first reaction was " You people are out of your mind", But I finlly came to terms with it. My son's father and I read evrything we could get our hands on. I think we came away more confused then we started. Every child is different with or with out ASD. Some things work for one set of parents that doesn't work for another. One thing I can say with out a doubt is do not feed into enabling your child to just be. We have pushed like crazy to get Malakai to learn letters, numbers, colrs, shapes. He was in speech therapy, he is still in OT. We fight for our son on a daily basis. We will not let ASD define who he is. There are some wonderful programs out there you just need to do a little research to see what is available to you. Our Son started taking classes at three. It cost us nothing. Be patient, Give him lots of love, and be sure to take time for your self. It can get really stress full. We make sure Malakai has chores to help with learning responsibility as well. He has come so far and yours will too! BE strong!
Pj - posted on 10/15/2009
im so sorry to here that but i must tell you you are your childs best advocate it takes lots of patience and guidance but never give up i thought my daughter would never learn to talk thearapy is key in your sons developement my daughter is now 16 and we still do all the therapy plus she has many other diagonose besides autisum but that is pretty common its very exhausting she has made many mile stones and continues to everyday im not sure where your located but a good resource iswww.aboutspecialkids.org i hope they can help you
Hayley - posted on 10/15/2009
I agree with the mums here too! My 9yr old son has asd & adhd & I remember the shock & panic I felt when I was told. I read everything I could find & asked my family to too! Now I dont think of him as having autism, his still my son, the same before I knew & the same now. He just needs more help then other children, thats how I look at it, not just looking at the condition he has.
You will learn as you go on, like you do with any children. Keeping to routines, keeping them informed, watching for triggers that could cause upset & stress, it becomes second nature. But as a mum said, every child with autism is different so its learning what works for your child.
Check out support groups too & talk to your dr about what help he can give you. Good luck hun!
Laura Dean - posted on 10/15/2009
Where do you live?
Annette - posted on 10/15/2009
Early intervention is a must...speech, ot, pt, social skills therapy all will make a huge difference in where your son will a few years from now. Check to see if there is an early intervention program at the elementary school in your county. Be a strong advocate for your son. No one will fight for his rights the way a mom does. You will come to know what is best from him. Find a counselor specializing in autism. Jenny's books are great. I also found a book titled Eating an Artichoke: A mother's perspective to Aspergers a real eye opener. Each day is a new beginning. Live each day to the fullest. Don't give up on the day before your miracle! >
Shawnee - posted on 10/15/2009
I did not read all of the posts here left for you so if this was said...
First and foremost - with the diagnosis your son now qualifies for medical assistance. Apply immediately to get your son in the system. He will get insurance, which covers everything, not just therapies. In PA, we chose Keystone Mercy. They pick up co-pays that our primary insurance does not cover. They also pick up payments when you exhaust coverage from your primary. Another "first thing" to do is contact a local foundation which offers in-home services. Since your son was diagnosed at four, he probably is higher functioning. I say this because in most cases, it is clear there is a difference in your child usually by age two. A local foundation which offers wrap around since your son is over three. They will come to your home and assess your son. Then assign therapists for what he needs. Which can include OT, PT and/or a behaviorist to attend to each specific issue your child may have.
Our son was not speaking until he turned 3 1/2 and then only slightly. But with constant home-based therapists and additional speech therapy, he now speaks in full sentences and is starting to expand his expressive language.
Having a kid on the spectrum can be extremely difficult. I still have feelings of loss like being in mourning for years. I know he will never be the kid I had hopes and dreams for while carrying him. But I also know that I am extremely lucky to have him! He is so funny and affectionate and so super smart! He amazes us every day with just how much he knows and what he can do. Also, having Ryan has made us generally more appreciative for everything we do have and we care less for that what we do not.
If you ever need anything or anyone to talk to, please do not hesitate to send me a line!
Letitia - posted on 10/15/2009
the first thing you should do is get him into therapy such as speech occupational and physio. talk to the other parents at a support group and keep in regular contact with your doctor especially if you feel things are getting too much.
my four yr old daughter has asd she was diagnosed at 2 i had no idea what autism was and how to help her.
my paediatrician referred us to Autism Association and they helped us get hannah in to speech physio and ot, we go to group therapy once a fortnight and whilst the kids are doing therapy they have a parents support group talking to these parents was great cause i realised i wasnt alone.
also if u live in australia (not sure about other countries ) you can get $6000 funding a year to help pay for all of their therapy needs and resources for you to use at home. in addition to respite care in your home similar to a sitter so you can have time to have a coffee go out to dinner etc. they also offer so house cleaning lawn mowing, fitting of handrails and other disabled needs your child may need.
our local hospital supplies nappies as long as you can prove prove your child has a disabilty and isnt toilet trained. these can be supplied for the rest of thier life you just need to apply once a year.
i have learned to take any available help that anyone can offer to myself hannah and my family
Eileen - posted on 10/14/2009
I took my now 5 yr old to a behavior ped. they will suggest wrap around services you will get a stranger in ur house, yeah thats a lil hard at 1st but u soon appreciate it. Apply for disability, I did bc I had to give up my job to take care of him & get all the right care for him, which makes alot of appointments, & its hard to keep a job, needing so much time off. If you have other children, educate them & try some therapy for them, I have 2 older children & its hard on them too. Look for a school, my son goes to a autism school, well its a class room with in reg school, we live in the country & there r 6 students in his class, about the same in teachers & therapist, they get alot of one on one. Just remember they cant help it & just love them as much as they will alow, my son loves affection so we hold each other as he calls it alot, but he is pretty hard to deal w/ ,patience is a must, joining here is a step in the right directions. There are alot of different methods that work for some children , each case is different. You can change his diet is a option that I havent tried but know that it works for a lot of people. At walmart you can buy a coupon divider it fits in a purse, make tabs for ins cards, copy of birth certificate & ssi card, each dr, keep any stickers from pharmacy bag if he's on any, your wrap around info like address & number, shot record, school, appoint cards, make sure to get a business card from everyone that has anything to do w/ him, dates of any surgery & spell of everything. It makes all appointment a breeze on paper work, our drs & such always compliment how organized that is. Praise him alot.Dont compare him mentally to others his age, it will just depress you. Most children love that squishy ball some have spikes, walmart & dollar store carry them, its a good calming toy for them. he will have a special talent in some area that he gives 100% to, help them explore it no matter how small it may be. Just make him happy, take me time, like an hour a day, remove yourself from him, u'll b a better mom for it. Educate your family & friends, what u learn share, it makes it easier for everyone knowing what to expect & they will be ur advocates. Good luck.
Laura - posted on 10/14/2009
After years of knowing things we different, we were relieved to finally get a diagnosis. Our son has PDD NOS Aspergers with Severe anxiety, finally diagnosed at aget 7 when early intervention would have been better. I hear this is best, the ealier the better.
Read Ellen Nothbaum's book 10 things every child with Autism wishes you knew! It is easy reading and tells you how your little guy is feeling, etc. As the author says, and i have to keep reminding myself of this: The only thing predicable with children on the spectrum is unpredicatbility! So be flexible.
Focus on what he can do as opposed to what he can't. Be patient and get support for yourself early, it's a trying time. But together we can make a difference.
Trish - posted on 10/14/2009
learn as much as you can, but each child is different.........you will usually know best, and will have already adapted your parenting style to fit his needs. School will be very hard - it is for nearly every autistic child - you have to make tough decisions about school choices, statements etc. I home school my 8yr old autistic son, he is coming on leaps and bounds and is so much more relaxed, and less agitated - ffel free to befriend me personally, if you wish to chat!
Mercedes - posted on 10/13/2009
Become as informed as possible!! I know how you feel..You have certain hopes and dreams for you son and you sort of think they have gone by the wayside but NOT TRUE!!. My son is now 13 and was diagnosed w/PDD (pervasive developmental disorder) and the first thing I did after giving myself 1 day to cry and mourn my hopes and dreams for him is go to the library and read up on Autism. Second thing I did was get a good medical team together who had experience with children like mine but were not jaded (childrens specialized hospital her in NJ was key). Third thing I did was get information from the board of eduction to start an early intervention plan and start looking at schools that I felt would best suit my son both in districit and out of district.
I know it seems overwhelming but take it 1 step at a time , and most importantly, ENJOY YOUR SON. You will soon learn more about him than you would think possible right now. BE POSITIVE, and know that you are not alone...we are here for you
Connie - posted on 10/13/2009
Get him in a program with your local schools. Early intervention is important. I have a 15 yr old daughter with it. Get him all the therapy you can too. (speech and/or occupational )
Anita - posted on 10/13/2009
From now on you need to get organized, get on a schedule so you can remain a well rested, clear headed voice for your son. Remember to save all papers and keep copies of everthing. These new papers will be how you can help subsidize the therapy you will both need. I have 5 kids 2 of which have Aspergers and the other 3 are on the fringes. My children are amazing people with bright futures ahead of them and it's my job to keep as many doors open for them as possible. Ask your son to tell you the best part of his day each night even if he dosn't speak. You will see into his soul as he finds that special moment . Lots of hugs your way! Ask Anything anytime!
Tracy - posted on 10/12/2009
My son is 15 and received great benefit from a forty hour a week ABA Applied Behavior Analysis program, He is like a normal child. Read let me hear your voice by Cathrine Maurice and reserch a lot on line, look at everything, then go observe different therapies, never stop trying to get funding , donations, and what ever you can to help him. It pays off in the end. You go girl!! and always remember these kids are blessings - you just might not realize it yet.
Judi - posted on 10/12/2009
We play in shaving cream but on a big piece of vinyl stripped down to the nappy, sometimes swinging on a rope hung from the ceiling (I've got a movement seeker), it also means that the shaving cream can be mud, dino slime, etc etc. drive cars thru it clap it off your hands (it's snow). paint in it, put the paper on top of the s.cream and the wipe it off - art work. Dry rice is good to play in too, not as harsh as sand, feathers, music, dancing. Drop everything if the request is verbal. And then Talk to somebody that is in a similar situation, knows about ASD, will listen.
Beth - posted on 10/12/2009
Keep that early intervention going! Check into a speech therapist, an Occupational therapist if needed. Lots of playgrounds for sure. That helped my boys. Talk, talk, talk and keep on talking with your son. Sing to him if he doesn't mind. Lots of sensory, such as play dough, finger drawing in shaving cream, playing in sand, puzzles.
Jennifer - posted on 10/12/2009
I have two boys on the Autism spectrum. My oldest is 15 and has Aspergers Syndrome. My youngest is 7 and has Autism. I can tell you this, I was very sad for a few days wondering what the diagnosis would bring to their future BUT they are my LIFE! They have brought so much love and joy to my life, it's amazing! Yes, you'll have to fight....and fight A LOT for them (school, church, family, etc), but it is worth it to see your child strive. My youngest was just moved to an autistic class for kids on the spectrum and although a lot of people are against that, it made the difference for my son! He sees that he is not alone. He is more verbal and he is starting to talk more about his feelings. They actually go out of their way to help him...not punish him. Anyways, you'll find patience that you never knew you had. But through it all, be there for him.....that is number one!!!
Judi - posted on 10/12/2009
Start therapy, read, find out about respite, cry. But also remember to enjoy being a mum. Remmeber to take time out for you.
Stephanie - posted on 10/11/2009
I agree with the moms here! Remember, he is your child first, , and the autism comes second. Also, keep in mind that you ARE NOT ALONE!!! I know you might feel like this, I certainly did and still do sometimes. I'm here if you need someone to vent at, cry on, whatever. Try to be good to yourself, too.
Much love, and many blessings
Karen - posted on 10/11/2009
I have a 6 year old daughter who lives with autism. My biggest advice is never use autism as an excuse for bad behavior. The rest of my advice comes from living daily with a 9yr old son who has above average IQ, gifted program in school and is his sisters biggest fan, and my daughter who learns differently and slower than most, but blows your mind when you least expect it....Giggle...alot! Hug trees, draw alot, have silly string fights, put prayers in balloons and let them float to God, throw glitter in the air, dress up like princess just to go to the grocery store. I find myself learning more from her than I think she learns from me. I am a 40 year old mom who suffers from MS and yet she encourages me. We do 1 cartwheel a day, and learn math by baking cookies. My son thinks I've lost my mind when I color my hair depending on the color we are studying that week. She learns differently which caused me to start teaching differently. I hope this helps and just know, autism can be awesom!
Beth - posted on 10/10/2009
The greatest advice I can give you is to remember your funny bone and bump it often. Patience and love will see you through. The posts that are here give you a lot of good ifo, read and learn everything you can. You are his first teacher, his first love and he trusts you, you are his safety blanket. It is important that you are his biggest fan, but don't allow him to control you. You are in charge at ALL times (even when you're not, YOU are in charge). Good luck it is not an easy road to travel, but you WILL make it.
Brenda - posted on 10/10/2009
My son was diagnosed with PDD when he was 9. Then his diagnoses changed from PDD to Aspergers. It's a high functioning autism. In WI there is a grant out there that will pay for Therapy if you start it under the age of 8. I would look into something like that to help. We use WEAP, Wisconsin Early Autism Project. It's expensive but we were lucky enough to have an insurance company that will pay for it. My other advice to you is when he gets to school you need to make sure you are his voice. Do not let the district decide what's best. You make that decision not them. My district tried sending my son to a day treatment facility that is over an hour away from home. I fought and wouldn't let them. He's doing ok in the public school but wouldn't be where we are today had I let them just send him off. I make a lot of my son's decisions for the school. I have parent advocates, therapists, behavior specialists, all come to the school to try to help my son. I had to find these resources myself.
One last thing is to always expect the unexpected!!!
I wish you luck, it can be a long hard journey but one that is very rewarding!!!
Sandra - posted on 10/10/2009
The only thing I can say is never give up on him. Get him the therapy he needs. Speech, Ot etc... I have recently started my son on a regemin of b12 and it has done amazing things for him. And don't forget to take care of yourself.
Colleen - posted on 10/10/2009
read! ... research as much as you can ... no 2 autistics are the same ... and find an autism advocate in your area ... they will help you find tons of helpful programs that are all free to you ... also apply for SSI for him, autistics are automatically approved ... this way all of his future medical needs will be covered for the rest of his life ... i know it's overwhelming but knowledge is key when it comes to children like ours ... i wish you good luck! ... =)
Stacey - posted on 10/10/2009
I also reccommend reading Jenny McCarthy's books, its one of the first things I did, also do your research on the net, www.TACAnow.org is a good site, www.generationrescue.com is another. We have also started our son on the Gluten-free/ Dairy-free diet and believe we have seen some improvement, read up about DAN! doctors and decide if you want to look into what they do/ Biomedical treatments and diet. And lastly, feel free to grieve, let yourself have a good cry and get all your negative thoughts and feelings out. And hopefully once you have gotten this out of your system you will feel better for it and will be able to think more positively and accept things as they are. Life with our children is no less enjoyable, no less special, no less happier because of Autism, it is just different, if anything it makes you appreciate the little things more. Good luck and know that we are all here anytime you want to talk.
Amelia - posted on 10/09/2009
Do your research. Speak to the doctors who gave you the diagnosis and ask for information on support groups in your area. Research schools (do you want ABA - which I don't reccomend- or play based, such as Floor Time) in your area and talk to current and former Moms from those schools. Most importantly, remember that your child is the same person he was before the diagnosis. Give him a kiss and take everything one step at a time.
Holly - posted on 10/09/2009
I would suggest you read Mother Warriors by Jenny McCarthy...it has alot of really helpful insights from lots of strong mothers and also it has a lot of refrences and helpful websites. We found our first DAN doctor through her guardian angel website.. There is a lot of information entering into this world sometimes it can feel really overwhelming.. don't let a label distract you from the fact that your son is still the same handsom amazing kid he was before he got a sticker on his shirt that said autistic. feel free to ask anything.
Sheila - posted on 10/09/2009
Our OT saved my son. I swear by our occupational therapist. (my son also has sensory integration disorder) Also, I would recommend nursery school before the big plunge into kindergarten. A small nursery school with a structured program and supportive staff (hopefully a resource teacher) Be good to yourself.
Juli - posted on 10/09/2009
My son has SPD with autism like tendencies with some behaviors including speech delays. First thing I say to myself is, he is my son and I love him regardless...Autism is something they have, not who he is. I've done a lot of research on diet (gluetin and casien) and red dyes (he is on a strict no red dye diet). While it doesn't work for all children that are on the autism spectrum, its worth a try - for me. Do lots and lots of research and most of all, go with your gut feelings. If the advice you're getting doesn't feel right, then don't do it - try something else.
Magen - posted on 10/09/2009
Buy Jenny McCarthy's "Louder than Words" and "Mother Warriors". my son was also diagnosed at 4 and with much treatment and interventions now attends a main stream school. Remember there are lots of moms here who are going or have gone through what you are going through. You are not alone even though you will feel like it at times. Try to look for the positives its hard in the begining but Autistic does not mean broken it just means different. So now its up to you to help him find what's best for his kind of different. Know that you are his biggest advocate. I became very familiar with google and am still to this day researching and trying to find what is best for my little angel. Listen to your gut and don't let people talk you into things that don't feel right. Feel free to contact me if you need someone to talk to. Stay strong it will be okay.
Shasta - posted on 10/09/2009
Contact the Autism Society of America and request their first 100 days pack. It will walk you step by step through research, setting up therapies, and how to talk to your family. It was really a great resource for us in our first 100 days and we still refer to it. Even after 3 years.
Chelsea - posted on 10/09/2009
my son is eight now and was diagnosed at age 3 and a 1/2 by our new peditrician. He has PDD the pervassive developmental disorder. He is the best thing in our life my advice to you is stay strong and take things day by day because his days will not be the same. When he starts school fight fight for everything you can that will help him adapt and do well. Let him be him you can't who you they are and last but not least it is not your fault. Alot of parents believe that it is there fault and what could have they done different while pregnant or why didn't they realize sooner something was different about there child. I have read so many different studies and reasons as to why children are autistic some have helped and some have left me puzzled. But remember STAY STRONG for him and FIGHT and it was never your fault those are the most important things I have learned that have helped our family and my son. Hope they work for you aswell and good luck
Lola - posted on 10/09/2009
Know that what you are feeling is normal. :) Talk to other parents who have a kid with austim. Join Autism speaks, you get a news letter that keeps you up on current news. I'm sure you are like everyone of us and have done copious amount of research. I'm luck to be in Stanislaus county in CA. They pay for all therapy for my daughter. Few places do that! We have what is called regional centers they can tell you how to proceed! Be care not to over load him. Not everything or even one thing well work for everyone. Each case is different, thus the puzzle pieces on the ribbon. If you have questions or concerns, want to vent just let me know. I'll be willing to help, been on this boat for about 5 years now! Add my daughter went from not talking hardly to now is main stream second grade public school, doing it all by herself! They are truelly amazing souls! Good Luck, Lola
Amanda - posted on 10/09/2009
Always be sure to remain an active part of his therapy. It takes a strong family effort but he can learn to love and enjoy everthing that everybody else does. Remember to be patient and loving even if he doesn't respond to your affection now one day he will and it will melt everybone in your body. Therapy is huge in the first years and it is beneficial to all involvoed especialy your son.