Laceychase
02-11-2005, 11:30 AM
My son was dx as severly to profoundly autistic at 24 months he is now 31 months old. I was just wondering if theres some parents who recieved the same or similer dx and what there kids are like now. Can they talk do they have friends what do they like to di that kind of thing if you don't mind sharing. :angel:
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CindyMae
02-11-2005, 10:20 PM
Hello, My name is Cindy,
I have 3 children with Autism.My middle boy was the first to be diegnosed when he was 4 years old.I just had my daughter diegnosed today.
My son is miled to moderate autistic. I can't really say how he is.He is Davion.The same kid I've had his whole life.I just love him for himself. the diegnoses dosen't change him.
He can say 3-4 word sentences but they are very limited("I want cookie").
He has his brother and they do love each other very much. I would suggest you read About A.B.A. A book called "Let Me Hear your Vioce". And start scrounging for info around where you live.
I am trying to start a home bassed therapies in my own home now. Good luck.
I have 3 children with Autism.My middle boy was the first to be diegnosed when he was 4 years old.I just had my daughter diegnosed today.
My son is miled to moderate autistic. I can't really say how he is.He is Davion.The same kid I've had his whole life.I just love him for himself. the diegnoses dosen't change him.
He can say 3-4 word sentences but they are very limited("I want cookie").
He has his brother and they do love each other very much. I would suggest you read About A.B.A. A book called "Let Me Hear your Vioce". And start scrounging for info around where you live.
I am trying to start a home bassed therapies in my own home now. Good luck.
ohnotagain
02-11-2005, 10:43 PM
Gday. My son is now 8 years old and doing beautifully. What helped me I guess, is the fact I put him into a regular day care and then pre school. The children in preschool with him have gone on to year one, and now year two and are fully aware he is a little different. Some children prefer to keep a distance, but most of them absolutely love being around him. He is a funny boy and its never a dull moment for his friends. I do not know what future years hold as children can be cruel, but our school has introduced a 'buddy' system in which my son is able to take one child with him to the Special Education Unit.
My only advice to you is to stay level headed. You have a big adventure ahead of you. I have learnt so much from my son in positive and negative ways. I encourage you to sit back, and observe a master at work. Our kids have a miraculous way of overcoming difficulties socially. Best of luck
My only advice to you is to stay level headed. You have a big adventure ahead of you. I have learnt so much from my son in positive and negative ways. I encourage you to sit back, and observe a master at work. Our kids have a miraculous way of overcoming difficulties socially. Best of luck
Laceychase
02-11-2005, 11:29 PM
Thanks I love my baby so much i only want the best for him. We just found out my youngest son Cody 18 months has a speech delay he starts speech thery monday. Alex has Speech twice a week ans OT once a week. There is no ABA therpy close enough for us to commute. We are looking to move to the city sometime this summer. Also, I am 20 today. I got pregnat at 16 had Alex at 17 got pregnat agian at 17 and had Cody at 18. Some people have told me that the reason my boys have delays is b/c I had them young and close together. I can't find any info to back this up so I don't think this is true. So if anyone knows for sure I was just wondering.
off kilter
02-12-2005, 07:22 AM
Hi i saw your post and I'm not sure what your looking for as my son is only just 7. Does he talk? No! maybe some day . With alot of good help he has made great progess in many areas. His eye contact is super, alot of things that use to scare him like vacums,microwaves don't anymore. He stims very little now and when he does it's easy to get him to stop. He no longer walks on tip toes. He's not potty trained yet. Is he happy? yes!! Very! The thing that is hardest for him is communication he only knows a few signs,and is still is struggling with PEC cards. But at home and school he usually manages to get his point across. I never thought his receptive skills would take off the way they did this year . He really understands alot of what is said to him. The hardest thing for us is keeping him safe. he still has very little awareness of safety and it's like having a hugh 18 month old when it comes to safety. I have found as each safety issue comes up this board is great with ideals. Paul is lucky enough to live here in the Boston Ma. area with alot of services, he attends a school that has 50 students who all have autism.Paul goes to school in an enviroment that is perfect for him there are only 4 boys in his class and 6 teachers. the staff at the school "gets Autism" and realizes Paul is smart and works hard to help him develop what ever skills he has. Paul had been up to age 5 in a classroom that specialized in social skills and lang. delays at a reg. grammer school where he did well till the last year when it became more of a babysitting service because he was the lowest functioning child in the class. We then had a choice of moving him to a special needs classroom within the school system where the kids had a varity of problems or looking for a outside placement. We were terified if placed in a general special needs program Paul would continue to slip further and further down the chain because the focus would be on the things he could not do like talk or use the potty. So we found a outside placement but it was a struggled to get the school system to pay $65,000 a year for school. The struggle was much eaisier for us then for our friends who have children with Autism because of the severtiy of Paul's Autism. Paul should be able to remain at this school till he is 14. he then can move to their next level of school for ages 14 to 21 with the option of M-F residential and from there into a assisted living program and supervised work program. Paul is having a great time at school it is a very safe place for him and the school brings a real sense of acceptance to us as a family. It is amazing to attend special events at my sons school and see 50 children all with Autism. I will not lie to you it was hard for me to see kids also with Autism from his eary intervention program develope lang. potty train and move into inclusive programs at the reg. school and at first I was jealous but now Paul and the other kids are 7 and 8 I see the struggles those kids and parents have day to day with behavior issues, teasing, lack of friends etc. and Paul is lucky to be going to school in a cocoon. Every day is another happy adventure for him at school, he is thriving in a school that goes out of it's way to both be a place Paul can get a education as well as develop friendships ,job skills, learn to be as independent as possible and have fun.. Just in the last 6 months the school had a Ice cream truck make a stop during recess ( I think some of the kids hoped it would come every day), brought a moonwalk to the school, had a winter festival, pizza parties, super bowl rally, Paul thinks school is great. Paul has a best friend who is very high function and the boys are like brothers. Paul is still severly affect by Autism but he has developed a day to day life that is very productive and happy. He has just started Special olympics and I'm looking for a cub scout troop for him. He does need someone with him at all times and is very self absorbed but he doen't realize ( like so many of his higher functioning friends do) that he is different. I do miss playing with him like I did with my older boys. You know games like candy land and such. But that lose is mine not his. my husband says if this is the worst it gets it's not to bad. Paul has his own life to lead and what's important is he's happy and content. I would tell you know to start looking ahead to services, schools and programs in your area. it helped to know about the May center school system when Paul was 2 or 3. You can check their website. Of course we hoped he would never need that level of service but he does and knowing it would be there if we needed it helped. I called special olympics when paul was 4 to get information. I also did what your doing which is talked alot to parents who had older children with Autism. good luck on this path.
off kilter
02-12-2005, 07:42 AM
Lacychase some people have told me Little Paul has Autism because I had him after 40. Paul's brothers are 27 and 25. Take everything , I mean everything people say with a grain of salt. There are alot of well meanig nuts out there! Why just yesterday I saw a pecan walking down the street.
off kilter
02-12-2005, 09:45 AM
Lacey it really bothers me some people imply your son has Autism because you were young when you had him. Children with Autism are born to mothers in all age ranges. thet are born to mothers who have very complicated pregnancies and or deliveries. Children with Autism are born to moms who have very easy pregnancies. The Moms are rich, poor and everything inbetween. Children with Autism are only children or have many siblings. Children with Autism Have parents with Phds. and parents with 8th grade education. Children with Autism are born to experience mothers and those with no experience. Some of the mothers smoked when pregnant others did not. Moms I've met are white, black,hispanic,asian. get my point don't let anyone make you feel it was something you did or did not do. Paul was born autistc his autism was not caused by diet, or shots. he had Autism symptoms in the first few weeks. The only thing I know for sure is more boys then girls have autism and that points to a gentic bases for Autism. Autism is not the end of the world but it is one hell of a trip.
Laceychase
02-12-2005, 11:01 AM
off kilter thank you so much for your posts. I loved to hear about your son he sounds like a great guy. I am defiantly going to do a search on different schools your right the fartherset i've looked ahead is prek at 4 and hes 2 1/2 now. Your last post lifted a huge weight off my sholders, i guess it I knew but, just needed a bit of reassurance thank you so much. I look forward to hearing more about your son. It was intresting to me for you to say your son is happy. Alex shows no emotion at all except anger but, that doesnt mean he doesnt feel. Which is hard for some people to understand b/c he just looks blank. What type of things did your son enjoy when he was this age? Alex loves bath time as long as water comes no where near his face and he like to ride in the car as long as we leave from home and go back home no other stops.
off kilter
02-12-2005, 08:15 PM
Lacey glad i made you feel better. When my son was your son's age he also had a face that did not show expression. It amazes us to look at video taopes we made around that time. It didn't matter if it was his birthday or X-mas his face always looked blank. The X-mas he was 23 months. You can see him standing in the background looking out the window while everyone else is sitting around the tree taking turns opening presents. everyone is making jokes, screaming with joy and there's paul silently looking out the window. he allows himself to be brought to the tree but then wanders back to the window. When it is his turn to see what he got he sits by the tree with a blank look as someone opens his present they might as well not even be there. We got him a electronic ABC board and the video ends with him sitting there pressing the X button over and over again stimming XXXXXXXXXX. How sad . Flash forward to the X-mas we just had Paul is signing open with each present and laughing. When the present is open by him (with a little help) He signs more because he want is assembled to play with. Paul sits waiting for Mom to put it together While Paul a happy glean in his eye is telling her to hurry signing more over and over again. He looks at the assembled Matchbox tracks and puts his cars on it running upstairs to get more. Soon there are a dozen cars going down the ramp and around on the ferris wheel. Paul sits there hands tightly pressed againist his mouth laughing with sheer joy at having a new toy. Paul is severly affected by autism. he will always need assistance. But can he enjoy life ?yes! Lacey try to keep a sense of humor in your day. The first time Paul mastered a shape sorter my husband announced well at least he now has a job skill. We had some older relatives visiting ( the kind that pray every day for a miracle) and little Paul was making little stimming noises like ba ba ba, da da do. One of the great aunts leaned in and said thank the lord he's trying to talk. Come on Paul talk you can do it. What are you trying to say. Just then my brother in -law who had snuck back behind the couch where Paul was sitting started whispering " I see dead people".lol! One of our favorite expressions is " sure it's cute now but will it be cute when he's 26". That one stems from Paul's latest trick when without any warning he's pulling his pants and pullup down to his ankles and running 1/2 naked across the room laughing hysterically at his (what we call look at me antics). My son who is severly disabled and refused to look in our eyes and always had a blank look. Is finally in his terrible 2 stage doing anything to get our attention. looking us right in the eye as he run's by 1/2 naked just out of reach. I'm around here if you ever have a question lacey. Paul is severly disabled and always will be but that does not mean he can't be happy or continue to grow and develop. he suprises us everyday with new skills. O! if you didn't get the "I see dead people "joke it comes from a movie caled The sixth sense.
mango2
02-12-2005, 09:42 PM
My son is sixteen, and he is on the severe end of the spectrum. He will always be Autistic and never live independently. He tries very hard to talk, but just can't do it. He has one or two words he can make with his breath and mouth, but not using his vocal cords. He uses his vocal cords plenty with all the other sounds he makes, and certain sounds are like words because we know exactly what they mean.
He does change as he gets older, so nothing last forever. Puberty can bring horrible mood swings, but you just remember it won't last forever.
It very sad to see a young man who has never had a true friend. He has never spent the night at someone's house, and no one has ever come to visit him. He will never have a girlfriend or even go out on a date. He will miss out on so much in life. Even sadder is the fact that you can tell he understands it and yearns to socialize, but just can't do it.
You can let all those depressing facts destroy you, and your relationships with other people, but as bad as it gets, you always remember it's much harder to have Autism than be the parent. We try to find bits of happiness whenever we can. We try to facilitate our son's happiness, which is very rewarding. We try to stay close to cousins and friends so our son can interact with other young people. We try to do things that normal families do. Sometimes it doesn't work out, sometimes it does. When it does, we savor it.
When I was a young parent, I had a chance to meet Temple Grandin when she came to speak at a conference our group organized. At the conference, there was a question-and-answer time at the end of her speech. I was very upset about Autism, and I had to ask her if there is any quality of life for an Autistic person, is life worth living?
I don't remember the answer, but it is.
He does change as he gets older, so nothing last forever. Puberty can bring horrible mood swings, but you just remember it won't last forever.
It very sad to see a young man who has never had a true friend. He has never spent the night at someone's house, and no one has ever come to visit him. He will never have a girlfriend or even go out on a date. He will miss out on so much in life. Even sadder is the fact that you can tell he understands it and yearns to socialize, but just can't do it.
You can let all those depressing facts destroy you, and your relationships with other people, but as bad as it gets, you always remember it's much harder to have Autism than be the parent. We try to find bits of happiness whenever we can. We try to facilitate our son's happiness, which is very rewarding. We try to stay close to cousins and friends so our son can interact with other young people. We try to do things that normal families do. Sometimes it doesn't work out, sometimes it does. When it does, we savor it.
When I was a young parent, I had a chance to meet Temple Grandin when she came to speak at a conference our group organized. At the conference, there was a question-and-answer time at the end of her speech. I was very upset about Autism, and I had to ask her if there is any quality of life for an Autistic person, is life worth living?
I don't remember the answer, but it is.
off kilter
02-13-2005, 09:08 AM
Mango, I don't know what area of the country you live in or for that matter what country you live in but have your considered moving to a area with more services? Where we live I can pick and choose from literally hundreds of programs and activities for my son. Great schools -Paul's school has been teaching Autistic children for 50 years. There is music therapy,Theraputic horesback riding,special olympics, bowling clubs for Autistic kids,camps, dinner clubs. As Paul is getting older the list of things for us as a family with a Autistic individual and for Paul himself only gets longer. If money is an issue most programs are free or parents can use scholarships or the Dept. of Public health has what is called discretionary funds which cover these things. As I mentioned to Lacey, Paul's school will take him up to age 21, Then they have assisted living houses and Apt. geared towards allowing their students the most independents as possible. At Paul's level of disability now that would mean attending a closly supervised work or workshop program with transportation similar to what he gets now for school and onsite staff all night in the apt. We have had to plan so far ahead because we are old! I mean really old, my husband and I will be in our 60's by the time Paul is 20 and with my Husband having something called COPD he may not even be around then. I know in my 60's it will be impossible to take care of Paul full time. Paul's siblings will be in their 40's and just getting their own children out of the house. They know we expect them to oversee Paul's care if for some reason my husband or I can't but I could not expect them to take on the day to day care. Paul's oldest brother (Eric age 27) has 4 children and has a adopted son that is only a year older then Paul with severe Autism so he has his hands full. Mango since your son is soon to be a adult where are you at as far as school,work skills, housing? any advice would help. Lacey= see how this works? your ask me because Paul is 7 with severe Autism. I ask Mango because her son is 16 with severe Autism. Your not alone ever Lacey.
off kilter
02-13-2005, 09:31 AM
Lacey- i saw a old post of yours asking about a communication board. We took Paul to Boston children's Hospital they have a dept. that specializes in assisted communication. He had a evaluation with all kinds of devices and we found the best one for him. It has room for 96 picture icons on 12 sheets that we change as needed. The dept. Dr. wrote a script and our insurance company paid for it. It's kind of like talking PEC cards. We were told it would not slow any speech development only inhance it because he would hear the word each time he pushed the icons. He is slowly learning to use it. We used one of the teachers 8 year old son's to program it so the device has a little boys voice. It took 7 months to get approval for the device so I wished we had taken him in sooner. Until we got the Tech Talk we were advised to get a talking photo album from The Shaper Image store. They are super it looks like a reg. picture album but next to the pictures there is a button for each picture for a message. We put in PEC cards and recorded the words. Paul learn for the first time to push the picture of bannana to get a bannana.
mango2
02-13-2005, 11:44 AM
I live in Southwest Florida, Fort Myers to be exact, and I work on Sanibel Island, where I grew up. I'm the father, btw.
Services for people with Autism have been very slow to come here. I used to go to ASA and SWFLAS meetings but nothing ever really came of it. We were constantly fighting the School District for a decent education and the whole process wears you down.
I spent time in college but do not have a degree, so I don't think I could move up north and make a living. I've heard services are great in the Northeast, but I just can't imagine moving away from our few relatives who help us.
We have no plans for our son's future. We know that if he wasn't with his parents, he would be very unhappy. No one could take care of him like we do. I've seen people in a local institution here in SW FL and although some parents support it, I know it would be hell for my son.
I should have qualified the answer in my previous post. Is my son's life worth living?
Yes, as long as he is with his parents. When we die, it will be the beginning of the end for my son.
Services for people with Autism have been very slow to come here. I used to go to ASA and SWFLAS meetings but nothing ever really came of it. We were constantly fighting the School District for a decent education and the whole process wears you down.
I spent time in college but do not have a degree, so I don't think I could move up north and make a living. I've heard services are great in the Northeast, but I just can't imagine moving away from our few relatives who help us.
We have no plans for our son's future. We know that if he wasn't with his parents, he would be very unhappy. No one could take care of him like we do. I've seen people in a local institution here in SW FL and although some parents support it, I know it would be hell for my son.
I should have qualified the answer in my previous post. Is my son's life worth living?
Yes, as long as he is with his parents. When we die, it will be the beginning of the end for my son.
off kilter
02-13-2005, 12:17 PM
Mago-You are right about the North East being very expensive. We have no choice about making plans for Paul's future, Paul should have a normal life span and I will be in my 70's when he hits 30. But the system his school has is awesome. We have visited many of the Apts. they own and both the staff and adults we meet at the apts. are super. most apts. are 3 bedroom, clients have their own bedroom and staff use the third. There is staff to help clients get off in the morning and staff there when clients get home, also they are there all night. Paul will have a busy social schedule including dinner at other apts. movies,dinner out, bowling, dances, field trips. special olympics. vacations.and of couse visits home. does your son have siblings that could enrich his social life? Paul's brothers are 27 and 25. Please make some kind of plans for your son if you wait to long you may run into long waiting list or worse no say in where he lives. if you want to stay in the south I would do a online search for information on the TEACCH program in N.C. That is the closest program I know to you. If you contact them they might know of some resources closer to you. My heart goes out to you in your concerns for your sons future but I promise you your heart will be lighter if you have some plans in place. We found a lawyer who for a very low fee, she only charged us for filing fees helped us come up for a care plan. One of Pauls siblings and a cousin will be responsible for making sure he is well cared for. To that end they attend most of Pauls school meeting and Dr.s appointments with us. They visit Paul at least once a week and spend some time alone with him each week. We have discussed our wishes for Paul with them and have stressed to them that we do not expected them to care for Paul only to advocate for him. we picked two people so they would not feel alone and will have someone to bounce ideals off of. i hope this information helps you. I agree there is some sadness in knowing we might have to leave behind a child(adult) who needs us. Which is why we have to do everything we can for our children to have a life of their own. There is a certainty I will not be here for Pauls entire life. So I'm doing the best I can.