Website for Families of Special Needs Children

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Sharon - posted on 12/29/2009

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Sometimes it seems like children are deliberately doing things to aggravate us to distraction. But most times when I work with children in the school setting, they are doing behaviors because a need is not being met. If I focus on what is going on around them I can generally figure out what they are wanting. I then teach them how to ask for the information they are seeking. It is all about teaching. And I hate to say this but I do teach the children that nobody can MAKE you feel or react if you don't want to. You are an important human being with thoughts and emotions of your own. Don't let someone else control your feelings. It is amazing how empowering it is for the kids who want to be someone important.

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Debera - posted on 09/15/2013

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I am looking for someone who can relate to me. My family is little support and my friends are retiring and have more than one home while everything we have helps us to help our children and travel expenses. My sons have a rare orphan disease and have tripled their life expectancy and I have had some hair-raising experiences as they try to maneuver their way through the lives of typicals and find their place.

Kimberly - posted on 01/02/2013

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I am a mother to a 5 year old little girl with Epilepsy, SPD, and ADHD combined type. I feel so lost. I want to help her, but I feel powerless. The meds took away her personality and away my heart. I also have an completly healthy 7 year old which I feel like im neglecting due to all the time I spend with my youngest. I am just so lost.

Susan - posted on 04/09/2010

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Christy, I agree with Pamela. I am overwhelmed and amazed at the enormity of the job you have taken on, and the love you are displaying! Listen only to the truth in this situation, and weed out and burn the lies. Some people are just plain mean.

Courtney - posted on 04/06/2010

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I have a three month old son with Hydrocephalus, I haven't been having the best time dealing with this situation, it feels like all I have been oding since he was born is going to and from Vancouver Children's. If anyone has any advice please let me know

Dawn - posted on 04/05/2010

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Hi Nicole:)

I am amazed at your strength, girl! I am also wondering how much support for your situation you are willing to accept from family, friends and programs? I certainly, sincerely hope that you are able to access some stable support to help to balance your life:) I would hope that you stick with what works, and disregard "helpful" advice from those who mean well but don't understand the pressure... Seems like folks like to try to "solve the problems" - when it is really an educational process for the long run:) Been there too:)

Could it possibly be that your son might be borderline autistic as well with his sensory issues? There are programs you might be able to take advantage of that include respite care if he might be:) He might really like some of the activities and soothing music they use:)

You didn't mention if your husband is functional or on medication? If he is stable, it might be calming to have a peacefully staged family fun night at home - games, or movies with popcorn treats and lots of snuggling if that works for your son:) Anything that you could do for your children and yourself that promotes physical touch, love and caring would hep to draw your stressed family together and be an island of peace for you all:)

I would think (from my own experience) that you are likely not taking as much time as you need to be good to yourself - for me what helped were warm scented baths just before bed:) I needed to take an antidepressant, and an occasional 1/4 of an Ativan as well, but the next morning when you've had a good night of rest and are not "hung over" from the 1/4 Ativan, you actually "feel like a person again," and are better able to problem-solve:)

Just some suggestions of things that worked for me while my kids were growing up:) I will be praying for you, Nicole - my faith in God was absolutely essential while going through my kid's trials; I hope and pray you have Faith also:)

Nicole - posted on 04/04/2010

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I have a 10 year old son with bipolar, ocd, sensory issues, violent and a 13 year old daughter with mild cyrbal palsy. Sorry about the spelling. Everyday is a challenge in my house. I also have a husband with bipolar.

Dawn - posted on 03/02/2010

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Hi Suzanne!

Thanks for the reply:) You DID help me - I hadn't thought about Job Corps:) Brad is off from his meds (of course, can't afford them) but is also giving thought to the military. If he couldn't handle it, he would be sent home, and then we would know that wouldn't be an option for him. However, his girlfriend is less than enthusiastic about that career choice - he will need to decide, as we all do, what to do with his life:)

Because of Brad's bipolar II, he would get 3 days of A's in school and then not turn in homework for the other 2 days:( He graduated with about a C average because of this - but when he's on, he's quite bright:) Structure is wonderful for him - we were talking last week, and I remarked that he is going to call these post-high school years "the lost years" because he has just been marking time - no progress:( Thanks for the encouragement!!! God bless:)

Susanne - posted on 02/27/2010

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Hi Dawn, I bet he does face many challenges and I really wouldn't know what to recommend. My husband is in the military so health insurance luckily is not something we have had to worry about. At one time we had three kids on meds and myself as well so I don't know what we would have done without health benifits through the military. Do they have a Job Corp in your area? I would look into some type of work-study program if I were him. One thing with ADD is that they loose interest in things rather quickly if it no longer provides the stimulation they seek. Is there something that he has a particular interest in? My oldest did well in school despite his ADD, at least academicaly. It was his behavior that always caused him problems. He went from straight As and Bs to dropping out of school in the tenth grade. He stopped wanting to take his medication... He ended up finally getting his GED and joining the Army. He is doing much better now. The discipline and the structure the Army brings has helped him. He is now married with a daughter. He still has twice the challenges that others do but he is getting better at compensating. I too have lived with undiagnosed ADD all my life and even though I am now diagnosed and have medication, it is still challenging. A lot of ADD and ADHD children develope depression on top of it, I know I did and my son too. This is something to watch out for. That can be paralizing. I wish you all the best and your son as well.

Dawn - posted on 02/27/2010

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Hi Susanne!



I read your post with interest:) My daughter is 24 with bipolar 1, borderline personality disorder, and syllogomania. She is also the mother of two, but has given up custody of her oldest. My son is 22 and has SEVERE ADD. We used to think that his OCD, bipolar 2 and ODD were the main issues, because it was surely dramatic to live with him, but now that he is older we can see that his ADD is really affecting his life - even more so than the other disorders. He has learned coping mechanisms for his most severe symptoms, but the ADD complicates his life incredibly. We live in the state of Michigan. He has been able to land a job working third shift stocking groceries. He just wants to be as normal a young adult as possible. Because of this part-time job, he has lost his state disability. After being his advocate when he was young and helping him to get disability, and knowing that he has to try 3 x harder than other young people to hold his job, I am feeling very betrayed by the system that was supposed to help him! We are now in the process of trying to regain his benefits - not just because of the finances (though last year he only grossed 10,500 - try to live on THAT) but because he lost his Medicaid! Therefore - read between the lines - my son, who has these diagnoses, has had to go off from all of his medications, and is no longer able to be seen on a regular basis by his doctor, because he cannot afford them. My heart goes out to him... any suggestions?

Susanne - posted on 02/27/2010

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Hi all, I am a mother of three, 22 yr old son with ADD, 20 yr old daughter with ADHD and 13 yr old son with Asperger's, SPD and ADHD. I tell you it has been challenging raising them especially my youngest with ASD. I have gone back to school to get my BA in psychology and hope to one day be able to help other Moms with the challenges of having a child with special needs. One thing I didn't have is a supportive family. My parents are very old fashioned and feel that most children just need some "good discipline" to get them straight. I have pulled away from some family because of this because my youngest son gets enough ridicule and misunderstanding from people outside the family that he should not have be subjected to more. So for those who have said they have supportive families, I think that is priceless and I am very happy for you. I pray that with more awareness and education on these issues that more young moms with children who have special needs can count on their families to understand and be supportive. It can make ALL the difference!!!

Claire - posted on 02/26/2010

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we have 2 kids aged 7yrs and 4 years the eldest has slight cerebral palsy and the youngest has developmental delay

Denise - posted on 02/15/2010

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I also have two children with special needs. Here are some encouraging words. Stay strong, stay postive, get plenty of alone time, take a nap find friends that will listen all of the time.

Tara - posted on 02/05/2010

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Hi!
My youngest of 3 suffered from multiple stokes in his brain when he was 4 1/2 months old, he was not expected to survive, but he is now 19 months old! We are sooooo very happy, but he does have alot of challenges ahead...He is blind and not expected to walk, but we'll keep him working so that he has every chance to be the best he can be!

Cherise - posted on 01/30/2010

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My oldest son has Aspergers Syndrome and my youngest son has Autism. I am studying to be a special ed teacher and hopefully my dreea will come true very soon. I want you to be encoraged and know that everyone has the potentila to learn no matter what. Also, i have tried to put them in as many social activites as possible that will allow them to understnad their world as well as theri world understand them. Again, be encouraged and I pray that God be with you and yours.

Maxine - posted on 01/29/2010

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would like to know more about this i live in melbourne we have a fantastic network of support where i live but it is always nice to get more info

Pamela - posted on 01/29/2010

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Hi Christy, You are doing a great thing by taking care of your wonderful kids. It doesn't matter if you gave birth to them or not, you are just as special by taking over where their biological Mom left off. I see so many kids that get adopted to loving families that really want to take care of them. I salute you for who you are and what you are doing!! Blessings, Pam Rice

Christy - posted on 01/28/2010

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I have three adopted children...my youngest son has FAS, and ADHD. My daughter was diagnosed mentally retarded with possible emotional disturbances. We're still going through the testing. I find that I'm regarded as a second rate mom because I didn't give birth to my children and because they have special needs. I can't tell you how many times I've heard "I would've sent them back by now!"

Pamela - posted on 01/23/2010

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Hi, I have a 18 year old boy with Duschene's muscular dystrophy and it is very hard to make it through the day sometimes. I do alot of praying and have a supportive family!! He uses a power wheelchair and we do have a nurse now that comes in 10 hours a day. He was hospitalized in 2006 and 2007 for upper respiratory infection. In 2008 he had spinal fusion surgery for scoliosis. He is holding is own right now but there isn't a cure and he may only live until his early 20's.

Niki - posted on 01/22/2010

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My son was (7) was recently diagnosed with Aspergers Syndrome, ADHD, OCD and anxiety disorder...my family is really trying to learn all we can about what he is going through and what we can do to help. We would love to be a part of a support group just to have some place to have common ground with others.

Eva - posted on 01/22/2010

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i have a 4 almost 5 years old girl. she was born with a heart murmur and right now is still there. she hasnt had any surgery. and is still doing good. she also was born with her eyes cross. i just forgot the right word for that, is not cross eyes. she had an operation already and looks better. no problem at all.

Dawn - posted on 01/22/2010

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I have a 8 yr old son who is developmentaly deplayed. He also has sensory issues and delayed speech.

Allyson - posted on 01/20/2010

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I have a 9 yr old son with Duchenne Muscular Dystrophy. Although he is not really in the special needs category yet, I know what is yet to come and that's the part I am struggling with.

Ruth - posted on 01/18/2010

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My son paul is autistic his taken to sleeping in our bed, i have no idea why and its just not no with us !! Every night its a fight to get him to sleep in his bed help guys what do i do???? its driving everyone up the wall.

Lisa - posted on 01/16/2010

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Hi, I'm Lisa, I am the mother of a 20 year old boy with Asperger's and with mild autism.
He is a pleasure for me, he has been a challenge but his school has been such a great support system for me and his dad. Worried about transitioning out of school in 2011...

Shelley - posted on 01/15/2010

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Hi i have two children sam is 9 and has down syndrome and hale is 7. Although it can be hard work having a special needs child it is also ultimately very rewarding and I can honestly say that I would'nt change a thing. Sam has brought so much into my life and the lives of all around us. That dos'ent mean that thare are not times when I coulc cheerfully run away and oin the circus, but then again don't all mums get like that at sometime or another.

Samira - posted on 01/11/2010

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Hi I'm mom of 2 boys with Special Needs,One 3 year old have a down syndrome.2nd 6 year old have a Autism . I have 2 other boys 1 is 14 year old 2nd is 10 year old .What is best help for Autism kids.He finish Preschool now he going in K.K .He has been exposed to Bosnian and English.In my house is mixture language,Do u think is best if he go more in some classes.He is healthy.Its just problem communication with people and kids in school.For my son everybody is friend for him ,he like painting ,writing ,and make his on story .I"m really enjoy to learn more ,Thank"s

User - posted on 01/09/2010

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I also have a special needs child. I adopted her when she was four, she is a fetal alcohol affect kid. She's now 16 and doing very well. She's too smart to not see that she's different. It would be a difficult place to be in.

User - posted on 01/09/2010

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I am a mother of a 5 1/2 yr old Autisitc boy who has complex medical needs. He has epilepsy, a mitchondiral disorder, Type 1 diabetes and a gut dysmotility problem. He is also severely developmentally delayed. We love him to bits and so does his twin sister xo

Nicole - posted on 12/30/2009

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There are not many people or any I know around me that have a kid with disabilities. I was once told my oldest probably wouldn't live let alone walk, talk etc. It was slow going in the beginning, but he's your typical 8 year old now. We are waiting for our appt next month so he can be tested for Autism. It is important that his brother who is 4 and I except him as the great, quircky, young guy that he is. No matter how trying the last 8 years have been, I'm blessed with 2 great kids. Excepting life as it is, instead of worrying about the questions no one seems able to answer helped lessen the stress I felt for years. Having a great, incouraging family helped to.

Sharon - posted on 12/29/2009

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Hi there
I do hope you are well today. Know that the love and dedication to helping your children be strong will in the end be your rewards. Love them and keep having faith that what you are doing is time well given to making others better people.

Sharon - posted on 12/29/2009

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Have you looked into mineral deficiencies? Each item you have listed has trace minerals and I am wondering if the child is depleted in one or more.

Sharon - posted on 12/29/2009

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Hi my name is Sharon and I am a teacher who works with students with special needs. I work with behavioral disorders along with Autism and the many side diagnosis that go with it. My concern for all children and adults with disabilities is that they get labeled not for what they can be and do but what disease or disorder that comes with them. I love children for who they are not for what problems they are burdened with. My one prayer is that parents, as hard and frustrating as it gets to try and communicate with your child, don't forget they are communicating a need to you and the sad part is that you have to find out what the question is they are communicating to you is. The use of picture schedules and/or structured programs within the home is critical to helping your child to feel safe. So often we forget their brains are wired differently and what we think of as a normal way of talking or seeing things is often times the total opposite of what they think. So please think outside the box. Try to be in their shoes. Look around when there is burst of screaming, running away, slamming bodies against the walls to see what may have triggered the movement. There is always the answer if we are willing to see through their eyes.

Naima - posted on 12/27/2009

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I have 8 year old son who has autism not talking yet, behavior problems and eating non item foods like papers, toilet papers, pealing walls and eating paint you name it and im really worried about his health everyday.

Andrea - posted on 12/15/2009

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Hi my name is Andrea and i have an 8 year old son with Autism a sixteen year old daughter. And currently expecting my third child. Since the summer time my son has started having obsessive compulsive behaviours about car doors having to be shut. Fridge doors stove doors. He will come running from another room if he hears the fridge open just so he can make sure it is closed. If he is looking out a window and sees a neighbour has a car door open he starts to panic and get upset. You can imagine what bringing him to the mall is like right now lol. He went into hysterics when a cab driver was standing outside his car with the door open. My girlfriend had to ask him to shut it so my son would cooperate and stop being hysterical in the mall. Any ideas? Besides patience? :)

Fabiola - posted on 12/13/2009

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HI ! My Name is Fabiola and I have a 8 yrs old with Autism, Im a mother of 3 boys, he is very smart, BT I have a question next year im moving to Houston do you know a school for kids with aspecial needs, Please help me with these I worry a lot for my son education thx very much.

Gail - posted on 12/09/2009

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My heart goes out to all the families that have poored their hearts out in these posts. I am a mother of 3 boys, twins 4 and a 2 year old. The twins were born at 28 weeks and very tiny--approx. 1.5 pounds each. They are now doing so well in their prek class, but
I attribute almost all of our successes from Tuesday's Child. This non-for-profit organization runs on almost no funding and does the most good. They teach parents and the children how to cope, use discipline as an opportunity to teach (even the most difficult children). The best part is the parents group...they really get you. I stayed on after the boys went to prek and now have my typically developing child there--he loves it and so do I. I would encourage anyone struggling with behavioral issues with their children or not to check this non-for profit out...tuesdayschildchicago.org...

Linda - posted on 12/06/2009

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I have three boys 12, 9 & 4 my 12 yo has Aspergers and my 4 yo has Autism.. Even though days can be hectic, we are so lucky that our boys are healthy.. and do realise that there other families have bigger issues than us.. Did anybody watch the ABC last week about a group of people with disabilites that formed a band, played at the UN and toured America, Canada and UK? It make me smile when you see people with disabilies doing what they love best, with audiences seeing past the disability.. You rock guys!!!!

Ann - posted on 12/05/2009

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I can sympathise with any special needs parent. It sure is difficult and I feel myself constantly secong guessing myself on how to deal with my daughter's problems. I get so frustrated with her and my patience wears thin.

Irenevgrandma - posted on 11/15/2009

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I am a grandma to my grandson who is autisic, Ethan is 14 years old. He is the reason my heart keeps on beating..My hero!!!!!!!!!!!!!

Danielle Renee Aka Lilbit - posted on 11/13/2009

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well i have a sister that is mentally retarded,she could not hear or speak not to mention walk the doctors told us she would not make it with out meds to make a long story short she is 34 yrs old and we treated her normal and give her no meds but if you saw her today you would see her not only walking straight but she understands everything their is to know .DO YOUR BEST AND PRAY ALOT IT DOES WORK

Dawn - posted on 11/12/2009

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I am a 48-year-old mother of two special needs young adults. My daughter is 24, and has borderline personality disorder, bipolar disorder and OCD (expressed as syllogomania). My son is 21 - nearly 22 - and has bipolar II, ODD, ADD and OCD. I could really use some encouragement of my own right now - do my fair share of encouraging myself:)

Brenda - posted on 11/12/2009

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I am the mother of a 27 year old daughter who has Turner's Syndrome and an extra fragment of a chromesome..she is mentally impaired and is 4' tall but is loved by all. She is written up in the medical history books because she is very rare. When she was born there was only 2 cases known..one in Vermont and one over seas.

Suzette - posted on 11/12/2009

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I was a teacher and an advocate for children with special needs and their families.

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