New Community for Parents and Teachers of Special Needs Kids to Connect!

Joanna - posted on 04/03/2011

I have a 29 month old son who has been diagnosed with an autism spectrum disorder, and I am an exhausted mother who feels like the worst mother in the world. I have no support system, other than my husband, and I am a stay-at-home mom. We are desperate for information regarding this disorder and about what we should be doing right now. Our son, Nick, is in Early Steps and will be graduating to FDLRS (when he turns three). Florida is not the best state with regard to resources, and I'm looking for moms in my area who I can exchange information and encouragement with. Thanks.

Bev - posted on 02/08/2011

I have a 15 yr old special needs child who is still trying to adjust w/ high school,bulling,and making friends ! she also has pcos which makes her hormones/emotions crazy> I bbelong to the ohio coalition for childrenW disabilities since1998. I would love to help!!

Kristi - posted on 02/02/2011

I have a 6 yr old with speech delays and adhd and sensory and it's also nice 2 learn new things that will help him 2 home and school.

Edith - posted on 12/22/2010

you did great. Joey's class has one day they "work" in a busness or nursing home. They take a list of what they are to shop for then they are to find the items and see how much they cost. Joey can fix things like toast and eggs and helps out in the kitchen, with washing and drying clothes even using the iron. I was a wreck the first time but I knew he was being supervised and need to learn to care for himself. He is in selfcontaned except pe and art this year but the room is small and set up as any other class room. The difference is the students are given work they can do with adding new work with it. He gets upset when he has to miss school and likes to spend time home but can not wait for school to start again.."his friends need him" Most of his class is the same way. The teacher and para make learning a challange that is fun.

Crystal - posted on 12/22/2010

Just had a meeting on Monday with the Director of Special Education and an Advocate from MS Rights and my daughter's teacher. Her IEP which is totally messed up and a copy from last years and this is what I have been trying to get it fixed will now go through a comperhensive review, which also means they will test her to see where she is at now, again something I'm been trying to get done, adjust her goals and add transition to the whole thing, like it should be. I was very happy about this. The Director wants to make some changes that will be effective once we come back from the holidays, like teaching cooking, shopping and now I will be involved. There should be more communication between me and the staff as to what they are doing. Only thing I didn't get was changing her school due to possible over crowding. The Director did want to make our school more proactive and productive regarding transition for the students so now we have to just wait and see what happens next. So at least I was able to bring this to their attention and I urge other parents to do the same if they are not happy with what their child's IEP covers. It took a lot of calling and fussing but I got it done and hopefully they will look at other IEPs and make sure they are done properly.

Crystal - posted on 12/22/2010

Welcome aboard!

Crystal

Julie W. - posted on 12/22/2010

I'm a mom to a 25-year-old son with hypotonic Cerebral Palsy and other severe delays. I also have been working for the last 3 years as a teacher's aide for preschool kids with autism and would love to be a part of this group!

Crystal - posted on 12/13/2010

Hello to all! I have a daughter name Kaleigh who is 18. She has Mental Retardation that I am now being told, is Autism along with speech issues, behavior issues and many other things. I guess it sounds nicer right. Due to my daughter, I have not been able to go back to work. As a bored stay at home mother I quickly realized I needed to do something productive, that is other then calling the school everyday fussing about what I want done. The real reason I joined this group is that I have this strong desire to try to join forces between parents, teachers, and resources. Where I have stood those three forces always seem to miss each other or there is too little too late. Too much paperwork, not enough funds you know the speech.... I am tired of hearing that same speech myself, so I think it is safe to say that others are too.
I am trying to put together a resource guide for all parties that are involved in a child with a disability. I have started with my own state, which is Mississippi. I am asking other parents to help me put together resources that they know of so we can pass it around to those who can use it. I am offering my email and my face book as a way to communicate any events or programs that I hear of; can you do the same and please pass this information to me and let your other parents know?
Please remember what resources are. Support groups, Non-profit agencies, camps, conferences, doctors that helped, articles, useful positive information, residential homes, group homes, nursing homes, day cares, nursing groups, extra activities offered, special events, discounted items, any government and state agencies, and anything that can be of use to families and caregivers of those with disabilities. In order for me to include information, please give contact information so I can ask these resources if they would not mind being included. I would not want to give out information without checking with them first. I do not mind doing that. Please when contacting me, let me know where you are located so I can keep the states separate. My email is bluejens32@yahoo.com and my face book is under Crystal Shaw. Please feel free to friend me and post any upcoming events and news in your area. I look forward to working on this project with all of you!

Crystal Shaw

Lisa - posted on 12/07/2010

Wow! To Jocelyn,(the mom of 7 children, who also works as a nurse!) You should really commend yourself! I am a single mom with four children.My 14 year old son is severely physically disabled,born with a rare muscle/joint condition...And I have a hard enough time with 'just' the four kids!!! don't be so hard on yourself(that's what I've been told!lol) =) It's people like you that inspire other Mom's (like ME) Take care.I know your post was from last year, but I just had to respond anyway. :]

Edith - posted on 11/29/2010

We were in our late 40s when the Lord gave us a son with Downs Syndrome. He is now 17. I worked until 30 months ago. Joey was in early intervention ( PT, Speech, OT, and had a teacher) before I went back to work when he was 2 months old. We have had teachers that we had to teach how to deal with our child and some who taught us how to help him. The main problem we had with teachers was that we DO have to act as a team with the main goal to help him into the best man he could be. We found with Joey that when he did something wrong he had to be corrected then and there. He would get on desk and stand up, take off his shoes and throw them, and just refuse to do anything the teacher wanted him to do. She did not want nish him in any way afraid she would hurt him.. The teacher kept calling wanting us or his care provider to come get him and take him home. All that taught him is he could go home instead of doing his school work. When we punished him at home for what he did at school; he just became angry and gave us and the teacher more problems. I do not like to spank a child but with some a few LITE spats is all it takes at first then most of the time all you have to do is threaten a spanking. With Joey we had to teach the teachers that he had to be punished at school. They let us know when there was a problem and we talked to him at home. That worked wonderfully for a lot of years. Now he can not go on school outings if he does not act as he should or not do his school work in class. He has missed one outing. Now he is on Principals List with a 4.0 in his speical ed classes and things like PE and art. This child can read and knows more than he lets us (mom and dad) know that he does know. This is for parents and teachers. We as parents have to make sure teachers a there not just for the money but also because they love their job and our children. If a teacher is a good one we have to support our teachers in all problems and TOGEATHER find a way to deal with each problem as it comes up. We are a TEAM and every one who works with a child with disabilaties is part of the team to make it work. If your teacher does not want to work as part of the team try to work with the principal of your school. if that does not work go to head of Special Education in your school system. If that does not work go to school board superintendent. Never let people tell you that they can not help you or there are no funds. There are funds for the needs of these children. I have worked closely with school staff from aides to teachers, principals, spicial ed and school board superintendents . Always hear what they think is best for your child and why. But you know your child better than anyone else. So far when we did not agree with advice and did what we thought best for him; we were later told we did the right thing. But Pray, Pray, Pray that God will lead you in doing what He thinks is best for your child.

Amy - posted on 03/16/2010

I drive myself crazy at times to understand and make things right as a mom. My husband and I have 3 children ages 6, 4 & 2. Our 6 yr old was diagnosed w/apraxia of speech, motor delayed, and a few other issues at hand. Our 4 yr old has an articulation delay/disorder, motor delyed, and a few other issues. And our 2 yr olds' motor skills are up to par but is delayed in speech/language skills. If I knew the right answers, it would be sooo much easier. But, with all of this it makes me a stronger person and more persistant to knowin and helpin my children and my family. I wouldn't trade the world for them. Parents need one another and I am glad that there are others to get support from as well. God has a reason for everything, one way or another.

Susan - posted on 02/06/2010

without the dedication and resources our darlings would be so much less "functional" in "mainstream" society - these children don't ask to be born with or acquire these conditions, however I do believe they in spirit, choose us to be their parents

Lori - posted on 02/01/2010

I have a child with an IQ of 64 and has mild CP. I find that she learns so much better when we make it a song. She takes so much repetition to get anything that is is so frustrating!! She is in third grade and she is still is at a K math level. But her reading has improved and is at a 1st grade level. Any websites that are free that help with math would be appreciated.

Nandita - posted on 05/17/2009

"Everything has a beauty but not everyone sees it" ...very true... this proverb applies so much in our lives.
hi, i am very happy to join this support group. My daughter Akshata is 10 years old, mild CP with spastic diplegia having multiple challenges (epileptic seizures, ADD). She goes to a special school where her needs are met. Though the facilities here (Mumbai, India) are very few for kids with special needs. I would love to interact with parents with special kids and I seek inputs on bringing up a special child.

Lorette - posted on 05/11/2009

Hi. It is wonderful to create a support group for parents with children with special needs. I think everyone should put a title to messages, so that you can identify people with similar circumstances.

I have a daughter with "Corpus Callosum Agnese" and epilepsy. She's beautiful. Where does parents children go to school? I'm in Limpopo. I have started an Enrichment Centre for Children with special needs. The schools name is Pathways Naboom. Does anyone know of any parents in Limpopo that can join the circle (parents with children with special needs) or people involved with these special children? We as parents should stand together and do all we can for our children

Tina - posted on 04/01/2009

Thank you for creating this Community! I have a six year old son who has ADHD, developmental delay and an articulation disorder. He entered Kindergarten in September and we love his special ed teacher. Her classroom is dedicated to five children between the ages of 5 and 7. She has taken the time to be aware of how each of her students individually performs on any subject. She is proactive and very easy to communicate with. Our problem comes when we try to advocate for our son to get more services from the district. We have taken him to see many specialists in the past five years trying to figure out how best to help him. We are trying our best to advocate for him during his IEP sessions and even in between. Sometimes it feels like I'm beating my head against a brick wall. My husband and I are very calm and collected people. We are both in our forties and don't go into a rage about anything. However, when I see how my son is not keeping up with his peers, it kills me. I need advise on how to proceed without losing my perspective.

Karla - posted on 02/11/2009

This is a reply to "Jaime Barrett";

I have a child with Schizencephaly and she is in school. She is never alone, not that she cannot function on her own, but for safety reasons. I live in Minnesota and know that children that are "at risk" are never left in positions where they may be hurt. You do not have to put up with that; as a parent you have to do what is best for your kid and sometimes that means you have to make the school accountable to the laws already in place to protect your child. If your child's PCA is not doing her job at protecting your child, then its time to request another. Don't let the school tell you that its not in the budget, because it is and they bill your insurance for their cost.

Jaime - posted on 01/21/2009

hi i have moved around alot in the last 8 years and have 3 speacil needs kids and with two of them there school is abselutle rubbish but got told by education board there are fine there but really is starting to get me down as one of them have cerbal pasley and adhd and is getting picked on like craise and his the one how is getting in trouble for it but what gets me the most he has the marks to prove it what do you reacken i do

Jocelyn - posted on 01/17/2009

Hi,

I am new to this group and I thank you for posting this. I am a single mom of 7 children. my youngest are twin boys, one of whom is mentally retarded..he is 10 yrs old now, unable to speak and is just learning to use the bathroom but with supervision. He need to be monitored constantly.. hes very hyper and throws tantrums when he doesnt get his ways!! he is in a special ed program.. but Im not sure if he is in a right school..the teachers are often calling me or writes notes in his notebooks and asking me why he throws those tantrums? Anyway I cant always be there at the school.. because I am working the evening shift as a nurse.. I am loosing my wits end and I dont know how to respond to the teachers...anyway I am glad I am not alone in this battle. Thank you :)

Andrea - posted on 12/19/2008

don't worry about offending. you are your childs advocate and your childs voice. you say whatever you need to say to your district and they will listen. i went thru the same thing and i spoke up, got other parents to speak up and we got the job done. don't give up.

Bridget - posted on 12/13/2008

I am so glad that you are so dedicated. I have moved around alot in the past 10 years with my special needs child. I am finally where I want to be, close to my family, and the school is awful for him. I would love to get some advice on how to approach the teacher about some of my conserns without offending her.