Name: Mary Title: New to this but need a friend

Hello, I am a mother of two. My one year old is a dream. She is the apple of our eye. I also have a four year old. He is everything to me, but sometimes I dont feel that way. We knew something was wrong at six months, but the doctors kept blowing us off. He was three before anyone took us seriously. He has been diagnosed with so many things I cant write them all down. Now I take him to speach theropy, Ocupational theropy, a phycologist, and a phyciatrist. Not to metion the the pycologist and phyciatrist I have to see now because of it all. I am glad I stay at home to take him to all this to get him better, but being with him all day takes its toll too. I have no friends anymore, because of his behavior, and I tell myself I am better off without them. Now I have no one left, and I am a very social person. All I want to do is make friends with people who understand, and find out if this whole thing is ever going to end or get better?  ?

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Name: CHRISTINE • Date: 02/27/2006 17:10:16

Oh mary i'm so sorry honey. It is tough i'm a single mommy of a one year old and my little girl too has a lot of problems. She hasn't started walking or talking yet and i'm so scared for her.
I too have taken her to countless dr's and the diagnoses has not been found yet. I wish i new how to help her. I'm here if you want to talk about your son or anything else.  =

Name: stressed out • Date: 03/01/2006 18:04:39

Hi Mary
I have 2 boys both autistic and I can relate to your feeling of being a social butterfly -- I love people too; I have made the mistake of isolating myself from my friends and tell myself I don't need anyone; of course, we both know it's a lie
I work full time and that helps me get out but after work, I come straight home to a difficult situation
if you want to talk, let me know  =

Name: Rochelle • Date: 03/04/2006 18:06:17

I know how you feel. My son was diagnosed with kabuki syndrome a few months ago. I put all my time into his doctor appt. and theropy. I also have 2 yr old so she also takes some time. It is hard for me because my son has such a rare disorder that I truly feel no one knows what I am going through. Sometime I feel it would be nice just to talk to someone who is going through the same thing with there family.  =

Name: Lynn • Date: 03/15/2006 21:36:11

Hi Mary,
I am sorry you are having a difficult time. I am not sure what behaviors your son is demonstrating, but I have felt the same frustration with my own. However, it wasn't so much what he was doing, as what he wasn't doing that was frustrating. I searched...and continue to search for answers. I can see how they relate together. This is actually my first time on this site, but I would be happy to share emails with you. Our sons may be similar, or they may not be-whichever-it is important that you have reached out to others. have been a teacher for 12 years, so I might possibly be able to help you sort out some of the behaviors he has, but I am in no means a counselor. Just someone who has been in your shoes....and continue the search for answers. If you would like to share emails, just let me know.  =

Name: reenie • Date: 03/16/2006 12:24:20

I totally understand where you are coming from. My 7 yearold stepson is autistic.  =

Name: reenie • Date: 03/16/2006 12:26:58

if you would just like to sound off and yell and scream I'll listen to you with understanding and maybe scream with u....lol....let me know if u would like to talk...  =

Name: Tracy • Date: 03/17/2006 00:13:38

Mary, I empathize!! I have a four year old little girl with epilepsy and severe developmental delay. I am a single mom (newly divorced) and my life is my daughters. She has multiple in home therapies and home schooling every day. I have only a couple of friends but no one truely understands our situation unless they have been there. Tell me about your son... I am interested. Tracy  =

Name: ghhthgh • Date: 03/25/2006 13:38:38

vfgnbfgghthg  =

Name: Carly Fulks • Date: 03/31/2006 13:15:36

I am a special education teacher in the Murrieta Valley Unified School District. I recommend forming a support group with parents of children with special needs such as yourself. It is very important that you know that you are not alone and others are out there that are experiencing very similar feelings that you are. Please respond if this sounds feasible to you.  =

Name: kye • Date: 04/19/2006 13:37:25

hello,
how are you doing there,please mail me back i will help you out kye_mya@yahoo.com.i will be expecting you mail.

cheers  =

Name: Rebecca • Date: 04/21/2006 19:35:31

Hi Mary,
I to am new to this I have a 2yr old boy with MANY problems as well. Don't feel you are alone. My son has severe developmental delays, seizures, a cyst that was removed from his brain, failure to thrive, legally blind. We also have pt,ot, and a special ed teacher . Please feel free to email me at peakiemae2@hotmail.com. We can talk and get through all this together!!  =

Name: Westernguy • Date: 04/22/2006 01:15:04

Yes - we are in a boat of being very sociable as well, but we have an autistic child who is now 9 years old . We have 4 kids and 1 has ADD/LD and other has Autism. Yes...we have lost many friends and some family due to his behavior (autistic child). Hope you are still up.....  =

Name: Mike • Date: 04/22/2006 01:30:36

We have been in the same boat as losing friends, we even lost some family due to our autistic childs behavior. Does a Mom's group help there? Church has been a blessing for us here, as we have a few (about all we have now) friends there. It does to a point get a little better when you can get assistance in having someone watch your child while you go shopping or something like that. Do you have anything in your state to assist with getting a PCA (Personal care attendant)? We have 4 kids and one is autistic (9 years old) and we have an 11 year old who has ADD/LD. So the tricky part is to be able to attend to the other childrens needs which is very tough. THat is where the PCA has helped out immensly. Keep praying, and we will keep you in our prayers too. Feel free to reply and we can chat more. Good Luck!  =

Name: Gail • Date: 04/27/2006 00:05:49

I'll be your friend. I'm a single mother of a 27 yr old son w/Down Syndrome. It has its ups and downs, but the isolation of raising him 24/7 is difficult to deal with, since I don't know anyone else in my situation, either.

You just keep reminding yourself of how much you love your special needs child, and that he/she was put in your life for a reason.

Reaching out to others is a healthy step, in my opinion. You are not alone. You are a wonderful person, even though I don't know you, because you are the mother of a special child, and you don't take that responsibility lightly.

I am hoping to connect with others like you and myself, so we can be supportive of one another, even if direct social contact is limited by our circumstances.  =

Name: Eileen • Date: 04/28/2006 02:47:48

My 20 yr. old son has several diagnoses(sp.) Your paragraph reads like I wrote it. It gets better. Albeit slowly. I have stayed at home since he was born. I hate to tell you this, but I have no friends with so-called normal kids. All my friends have kids with disabilities because only they can understand.  =

Name: Juanita • Date: 04/30/2006 11:19:47

Hi Mary.I just stumbled upon this website and I know how you feel.It's helped me already just reading the replies you've gotten.I am mother of 2 boys My 9 yr old is a very advanced learner and my 6 yr old was born with a chromosome deletion.He is cogniteively at newborn to 4 month old range and has many disorders because of his condition mainly seizures.I have time to myself while he is in school but the tension I feel while he's away from me never goes away.Sometimes you just have to take it minute by minute.I also was a very social person but its pretty hard to go out and relax and have a good time when you know theres a child relying on you and only you to be ready for his needs.At any moment he could have a seizure and quit breathing which has in the past and recently landed him in the intensive care unit .Ive resorted to talking to one person online who Ive never met and some girls at the nearest gas station..LOL! I know it sounds strange but they usually have an ear for me when i just want to ramble on about nothing as most people do sometimes.I would be happy to give you more contact information if you would like to talk but not quite sure where and how I would go about doing that on this site.If anyone knows please let me know:) Hang in there sister!  =

Name: insiya • Date: 05/08/2006 17:45:28

hi  =

Name: Debbie • Date: 05/08/2006 19:15:22

Hi Mary! I am a single mom of a 7 year old boy. He has severe developmental delays along with many other things. I sometimes feel alone with all of this. I can talk to my friends but they really don't know how I feel. Feel free to email me at dvcmasi@goredlake.com if you would like to keep in touch. Be strong - I know my son has made me a much better person. Take care and hope to hear from you soon!
Debbie  =

Name: abigail • Date: 05/10/2006 13:51:43

i want a friend  =

Name: mp3 • Date: 06/20/2006 14:39:45

was up  =

Name: Michelle • Date: 06/30/2006 19:07:05

it sounds like you need a break and someone to talk to who understands. try to get respite care, it will help alot! i am a respite worker and i know whenever i get to the house everyone breathes a sigh of relief and is able to relax, sleep, do housework, etc. things that they couldnt do while watching leo at the same time. and as far as having no friends because of his behavior, you are right that u are better off without them. anyone who would distance themselves from a friend because of her handicapped child is not worth being friends with. u can always talk to me anytime u need to, hang in there sweetie. alwayssweet89@yahoo.com - email me if u need to talk.  =

Name: saravitale • Date: 09/15/2006 11:55:44

Hi Mary

I have two boys, Kane age almost three and Louie age 1. Louie also has so many problems I cant list them all here....I know what you mean about feeling like your social life rolled over and died on you. I would like to get in touch. My email is tat2dchica@yahoo.com and my son's website is http://louisangelo.tripod.com I have a resources page you might find useful and also "Angel Boy Art" may be something your family is interested in.

best wishes and hope to hear from you soon
Sara  =

Name: Jen_Thrasher • Date: 09/15/2006 13:00:25

mary it would help if you listed at least one of the dx's so parent would know how to respond to you and your situation, my 2 1/2 year old is autisic, and i too feel all my friends stop calling or coming bye thathurts, and they act like there kids might catch it, it's heartbreaking,,, but you are better off, as those kinds of ppl will give bad advice about things they know nothing about, keep your chin up i live in Indiana and would love to chat and e-mail, i too need friends who stay with there children all day, and feel lost, i have lost out on my own life for 2 years and it's time to stop and breath before i lose my mind,,,
i am working on a project for christmas time, to have a christmas for the children of friends with kids with specail needs, it will revole around the children not the adults, but of coourse the adults wll have the chance to mingle with other adults, and have opp. to talk a things we don't get much of, i'm sure you can relate i want to talk to other parents not just docotra and theripist..... thrasherjen@comcast.net
write anytime  =

Name: sarahsmom • Date: 09/17/2006 19:36:23

Hello, my name is Shanna and I live in Bothell, WA. Did you find someone to talk with? My daughter Sarah is nine. She is developmentally delayed and has a long list of health problems (mostly heart related) Feel free to email me at msshanna26@yahoo.com  =

Name: tweety • Date: 09/18/2006 20:00:26

hi................  =

Name: sooty565 • Date: 09/22/2006 19:01:24

hi mary it must be soo hard on u im new to this site too.i know its hard at the moment but things do evenually get better if u want i will listen.  =

Name: bubegirl77 • Date: 09/27/2006 01:11:35

Mary, I feel what you are going through because I myself am in the same boat. I had friends and then things slowly disapated. My sons need a lot of time and patience and extra love. I just so frustrated and overwhelmed sometimes I feel like no understands what it is like to raise these two precious boys. I just take things in stride day by day. I try to get out and enjoy things as much as I can you just have to stay postive and try taking them to a special play group. I am sure most states offer them. Good Luck bubegirl77  =

Name: calvinsgirl • Date: 09/27/2006 11:21:38

Mary,
I know how you feel as well, If you would like we can talk

Calvinsgirl@yahoo.com  =

Name: mommyinwaiting • Date: 09/27/2006 19:51:18

Hi Mary, I know how you feel. My adopted baby boy 17 months old developementally 7 months has multiple special needs. It is very to become isolated, and not many people know quite what to say or do when discussing this. I have family but really not very many friends left. None of who I do anything with any more. We are looking to adopt again. Hopefully we will have a "typical" baby (I learned early on not to say normal). Every achievement that my little one gives me holding his head up, sitting up for the first time, beginning to babble. These are all very recent things. Going to the grocery store can be a battle because he throws his head around and can hurt himself easily. Anyway, I just wanted you to know you are not alone. By the way have you heard the special poem about going to Holland? Check into it with your support staff. Things will go up and down. New expectations/goals will be set. It is a whole new world for us having a special needs baby.  =

Name: jo ann • Date: 10/08/2006 07:45:02

I so understand what you mean , when my yougnest was diasnosed w/mosaic downs I was told I couldn't work then six months after that my oldest was diagnosed w/ autism and i was glad to be home w/ them but all I have to talk about are my kids and their issues . not great for most friendshios not to mention that some of them didn't know what to say so they stopr\ed talking to me. It's hard and hard to do a good job w/ the kids w/o a break . hang in there . Jo ann  =

Name: babyhuie61 • Date: 10/20/2006 23:10:16

Hi mary. My name is Cindy. I ahve a 15 yr old daughter named sarah who is globally delayed. This means mentally and physically. She has had a rough go of it, and she also suffered an acquired brain injury at school when she fell and fractured her skull. You can get a hold of me anytime.

cindy  =

Name: Lily • Date: 10/21/2006 18:04:15

Hi, my name is Kathy. I have a son who is Autistic. His name is Travis. Has the doctors diagnosed your child yet? The reason I ask is because my son has to go to all of those things too. Travis is 10yrs. old now. Has been going to school since 3yrs. He loves school!! I'm glad or it would be really hard on him. I know how you feel about being alone. I live out in the country and I'm the only Mother that has an Autistic child. I have no friends, but would love one!! Type back.  =

Name: charlies_mum • Date: 10/24/2006 04:45:51

Hi Mary
You arnt alone and as I sit here and read another cry for help it brings tears to my eyes because nobody knows how it is with a disabled child unless it happens to them. Its heart breaking to see your child struggle and be looked at, teased and everything else that goes with it. We all keep going because WE LOVE OUR KIDS. Look deep and see how strong spiritually you will become. I think myself lucky and privledged that god has entrusted this little soul to me to care for. I know this medical system is crap, I too was put off by doctors thinking I was a neurotic first time mum. Its hard and I dont think it gets any easier but we all have to stick together for support because nobody else is going to give it.  =

Name: sullykidsmom • Date: 01/08/2007 11:28:10

I am going through the same feelings that you are. Sometimes I just wish that when I go to sleep I'm going to wake up the next morning and everything is going to be all better. I have four other children and my youngest has been diagnosed with CP. I feel alone at times and have virtually lost all contact with my friends. I need someone to talk to that can relate as well. You can email me to talk if you would at sullykidsmom@yahoo.com  =

Name: lkng4help • Date: 01/19/2007 18:54:07

Hi I would love to find out more of your situation. Has your son been diagnosed (what Chromosome(s)) Our son has a dletion in one of his chromosomes we found out when he was about the same age as yours. He is globaly delayed and enroled in a special education as multiply disabled. I can totaly relate to the isolation of having a child with this problem. People tend to remove themselves from situations where they may feel uncomfortable. Our son is now 11 and he is now going through puberty. As you can imagine this is creating a whole new set of chalanges....please if you think we may be able to give you some guidence feel free to contact us  =

Name: leila-marie • Date: 01/24/2007 16:32:25

is it a girl or a boy becuse i need have friend  =

Name: leila-marie • Date: 01/24/2007 16:34:41

my friend got that what u son got sorry about that  =

Name: jla16 • Date: 01/28/2007 19:44:37

Hello, I am a signle mother of a 7 year old autistic child. I know how you feel about not having any friends. All of my friends from high school are no longer in contact with me. I feel the same way in thinking I'm better off without them, but am still dealing with being alone with no one to talk to besides my parents. And trust me it does get better. The littlest improvement or accoplishment or something new he does or learn will show you that it is all worth it. You just have to hang in there and find at least one friend who truely understands, cares and is willing to listen, talk with you and be there for you no matter what.  =

Name: Alyson Maire • Date: 02/04/2007 10:00:32

Hi Mary, my name is Alyson and I definateley understand how you feel. My son is now 8 and has had problems forever but didnèt get a diagnosis until just recently. I have always felt it will be easier to things alone, especially with behaviours that can arise. But this does get lonely. I really understand what you are feeling and if you need support dont hesitate to contact me.  =

Name: suzi • Date: 04/04/2007 22:52:01

Mary: I looked all night for a website like this. My son is developmentally delayed with low muscle tone and severe food allergies. they still haven't told me what he really has if they can figure that out at all. He goes to pt, ot and speech. I find myself frantic for him to stay friends with his preschool buddies but i see that his differances are starting to show. I kept him back for preschool for another year and yet he is still not really ready for kindergarden. He has trouble with social cues and tells me his brain isn't working right because he has such a hard time concentrating. i have been so relaxed about this but now i just am frustrated and he asked me today if i was mad at him ...it is just so hard. i feel so alone and am recently divorced and have sole custody. it is so hard to do all these decisions on your own. i realized today that i need an outlet as people around me have no idea what it is about. i would really like to chat with you and anyone else. I really want to be there for my son and it is so hard to see that kindergarden is going to be so hard not the fun place i had experienced.  =

Name: r3kidsmom • Date: 04/05/2007 16:13:28

dear mary,i know just how you feel,i think we must all go through this,half the time i keep contact with the few friends i have left via e-mail or the phone,my son is special needs also he was our 3rd child we have a daughter turning 21 and a son who' s19 our youngest will turn 10 in june,so many of my friends after he was born just didn't know what to do so they walked away,the ones that stayed have been a blessing,but i feel bad that i don't have time for them,my son was born with a very rare genetic disorder,he suffers from myoclonic seizures among other things.i would love to talk with you and also we can both offer support.hope to hear from you.robin  =

Name: lkng4help • Date: 04/27/2007 13:58:25

my son is now 11 currently he is having an outbreak of exzema on his ears. With his compulsive behavior he tends to pick anything on his skin. His ears are suffering as a result. (He has a translocation of chromosomes 2 and 13 with some missing material from i think 13 ) Another thing we have to contend with is he is now going through puberty OMG. He has a hard time communicating as it is and now he is being flooded with hormones. Does it ever get eaiser??? Now we are fighting with the school they will not bring in an aid in his class to help keep him on task and they have decieded he has reached maximum potential in PT so thy will be discontinuing this next year. We had an advocate come with us to his IEP and she argued with us but to no avail. ugh  =

Name: katfeet • Date: 05/16/2007 04:57:03

I raised a son with ADHD, ODD and BiPolar. He will be 24 in June and he is much better but still has issues. He is by baby and always will be. It has been really tough though. I was having him tested when he was 13 months old because the schools wouldn't test him any younger. I knew something wasnt right but you know how doctors are they think mothers are stupid and dont know what they are talking about. My prayers are with you and if you need someone to vent to I listen real well and I will respond to you if you write to me. Kathy  =

Name: lucinda • Date: 06/12/2007 04:43:36

Hey there mother of two if i may call you that,live never seems as if its going to get better i have one kid.....he is a handfull
i never have time to make friends and he takes up all my
time,but what can we do our kids are a blessing........
dont give up things will better itself

lucinda  =

Name: channa • Date: 06/14/2007 04:29:21

hi, i need to speak to someone pls....  =

Name: Rod • Date: 06/21/2007 00:25:01

need to speak to someone  =

Name: vijji • Date: 06/25/2007 11:00:30

hi
this is first time chatting with a friend. a mere touch is enough to communicate with any body. if it is the baby . it better understands its mother or father by the very touch. i hope the time may show a way out  =

Name: sensi • Date: 07/18/2007 04:58:39

hi im 22 married i have a lil boy who is two. im a stay at home mom and it can be lonely. just wanted a friend to talk to. you can reach me at asensions@aol.com. if you wanna talk  =

Name: shirley • Date: 07/19/2007 22:26:05

I have 5 beautiful daughters aged 15,twins 10, 9,7. because i have chronic back pain. I don't get out much so i don't have many friends and would love to be your friend. I am a stay at home mum and love it because i get to spend time with my girls. Hang in there things will get better i was hit by a truck when i was 6 and i was paralyzed down the left side but now i have 5 girls and am managing quite well. I believe you should never say never all things are possible. I hope we can be friends.  =

Name: VB • Date: 07/20/2007 06:46:15

Wow, five girls, no wonder you don't get out much, that's a lot. I have a 6 yr old boy and a 3yr old girl and I thought that was a lot of work. However when I hear of people have three boys or five girls, whew, I'm thankful for just my two. I had my tubes tied after number 2 since that is all we really planned for.Nice to meet you. Both of my children are deaf but hear and do well with their cochlear implants.  =

Name: shirley • Date: 07/20/2007 08:46:21

Hi VB thanks for answering my message my girls are 15 ,10 ,10 ,9 and 7. How are your kids mine have all had the flu lately including my husband and now i have it this is a bad time of year for colds. Lovely to meet you keep in touch please.  =

Name: VB • Date: 07/20/2007 19:16:46

Sorry about the flu, we are all well here in Alabama. I am a volunteer so I monitor several forums and try to help those who may have been newly diagnosed w/hearing impairments. You'd be surprised at how many there are...enough to keep me busy!!  =

Name: shirley • Date: 07/21/2007 00:35:36

Hi VB I live in Queensland and at the moment it is 3 in the morning to 20 or 21 degrees, Celsius. Your job sounds very interesting my husband works at a health lab at Rockhampton Hospital he tests blood and urin and pathology work. I always wanted to be a nurse but because of my accident I was unable. I hope you are well and happy and yourkids are fine keep in touch love your new friend Shirley  =

Name: shirley • Date: 07/21/2007 07:16:30

hi Sensi how is your little boy i have 5 lovely daughiers cassandra 15 Alissa and Sarah 10 Tiffany-anne 9 and Karina she is 8 yrs i love being a mum it is very tiring at times though. Hope we can be friends and keep in touch from Shirley  =

Name: VB • Date: 07/21/2007 16:17:00

you can contact me through my blog if you want
www.deafkidscanhear.blogspot.com  =

Name: Sherry • Date: 07/25/2007 02:28:28

Hello Mary - my daughter is almost 22 - she has epilepsy - grand mal seizures, autism, non-verbal, incontinent and developmentally a toddler. She has been through it all - if you need to talk - I'm here - I've cried, gotten mad, sad, solemn, .... there isn't an emotion I haven't gone through - but when it is all said and done - this is your child - and you're all he has. Do you have a Special Athletes program in your area? These are great people that take the kids on outings with the parents and other siblings and then to Special Olympics - it is a fantastic group of people - they all know what you are doing. Kandi has had some incredibly bad behavior at times - for months at a time she would do nothing but scream - I thought I would lose my mind - I didn't - You will be ok - I promise.  =

Name: tolani • Date: 08/05/2007 12:28:29

i went to be ur friend  =

Name: Rose • Date: 08/07/2007 17:44:39

I am really sorry you are feeling so isolated from the world. May be we can help each other because since my husband retired from work I too have become isolated from every body is used to call my friends and just the other day my best friend (so called) ended our friendship, because I wasn't going to see her .  =

Name: Shirley • Date: 08/08/2007 22:28:24

hi Rose i too would love a new friend i have 5 lovely daughters but because of a disability from my childhood i find it hard to get out or walk very far finding it hard to make friends and i would love to be yours.  =

Name: Shirley • Date: 08/09/2007 19:49:05

hi VB sorry i haven't written in a while computers been playing up and can't get e-mails. Hope you and your family are well it was my birthday on the 4th of August and our anniversary was on the 6th we have been married 19 years. We were married in 1988 that sounds like a long time doesn't it. Sarah one of my twins came second in the Japanese contest and ran in the 2.5 km school run (thats two times around the school and one and a half times around the oval) she came 8th in the girls. She did it with a broken jaw she found out her jaw was broken afterwards. Hope your well and happy from your friend Shirley  =

Name: VB • Date: 08/10/2007 14:34:46

Yes, we are all well, just busy. School started for us on Thurs. I was so excited!! Stay at home moms tend to be excited I believe, a little moment to ourselves.My son is in first grade and daughter in a two hr preschool program. It's 103 degrees (F)here, no joke. How is school in Queensland? are you in or out, some people are never in or out. nice to hear from you.  =

Name: Shirley • Date: 08/15/2007 19:24:07

hi vb kids are in school but i have the twins home with the flu today. my youngest karina has been sick too but she is back to school today. i am fine but my neck and back are giving me pain at present my birthday was on the 4.08.07. Alissa and Sarah are 11 on Saturday 18.8.07 karina will be 8 on the 26.08.07. it was mine and Davids 19th anniversary on the 6.08.07. hope you are well from your far far away friend Shirley.  =

Name: Kelly • Date: 08/16/2007 00:06:22

Hi, I am new too. It will get better I think. I was so happy this week to have nurses to two days this week. I went out of the house for the 1st time in 3 months today! I have lived in the hospital for over a year with my son Amos. He is wonderful, and I love him so, but he has trisomy 18 and is suppose to be dead . My doctors keep telling me that anyway. They got sick of waiting and send us home.
But today I found out I am pregnant again! Oh my goodness huh! I dont know what to do, I dont even what to tell anyone!
I will never hear the end of it. So I need friends too. I am isolated at home too. And get this it is my 8th child now!
Hope this made you smile , but it is all true. I would love to be friends with you.  =

Name: VB • Date: 08/17/2007 06:41:41

Hello to Queensland again. Shirley, hope you all get over that flu wow what a time you've had. Kelly, wow, eight kids. Someone once told me, there's one kid and there's more than one kid. Apparently if you can handle two you can handle eight. My heart goes out to you girl, wish you the best.  =

Name: Peta • Date: 08/22/2007 20:09:42

Hi Rochelle,

I have an aussie website for families affected by KABUKI SYNDROME..Please visit www.sakks.org
Peta  =

Name: Shirley • Date: 08/27/2007 02:30:52

Hi VB, how are you i hope you and all your family are happy and well
we have just had 4 birthdays in our family, my birthday was on the 4.8.07 Aissa & Sarah were11 on 18.8.07 and Karina was 9 on the 26.8.07
August is a very busy time for us and very costly. Everyone is nearly right from the flu but my hubby and little karina is still coughing my head is acheing i hope im not getting sick but its probably my turn as i have been nursing a sick hub & 5 children for weeks. hope to hear from you soon. your friend from qld. my siamese cat had 6 kittens.  =

Name: VB • Date: 08/27/2007 05:44:25

Of course your cat had six kittens, she's couldn't let you out do her! haha. Glad your family is getting well, hopefully hour hubby will be back to 100% soon. We are all fine, school is going well if my little six year old will settle down and behave! Can you believe a boy being born deaf, gets in trouble everyday for talking?  =

Name: gbenga • Date: 09/03/2007 18:05:58

am gbenga from nigeria , i would like to be one of your member  =

Name: VB • Date: 09/03/2007 20:09:34

HI GBENGA from Nigeria, what's your story?Welcome  =

Name: mark • Date: 09/09/2007 15:17:44

hi, i can be your friend only if you can be my friend.  =

Name: mark • Date: 09/09/2007 15:46:00

hi, i can be your husband because i understand you feeling  =

Name: mark • Date: 09/09/2007 15:57:30

hi,understander how you feel that why i want to choose you has my friend  =

Name: de • Date: 09/09/2007 16:13:37

hi  =

Name: shade • Date: 09/11/2007 02:53:46

i need help im kicked out  =

Name: helper • Date: 09/11/2007 03:01:13

i get that way too but hen i turn around and say better to be happy with my lot because it is it hard enough to be a mom of two but its harder if you where not now that you have two be happy and then g-d willing will be a great futer to you and grow to be the best they can be with a big smile  =

Name: kim • Date: 09/11/2007 11:46:54

hello, i am new to this, i have a disabled 3yr old daughter named Angel, she is my reason for waking up everyday. I just wanted to talk to someone who has some of the same issues that i do.  =

Name: shirley • Date: 09/13/2007 18:24:30

We sent the kittens to the pet shop as we've got 3 cats already and 3 is the legal limit. we also have a new puppy we called it little angel. My smallest twin sarah came second it the Japanese competition. Came eighth in the 2.5km. And 25 in cross country out of 72 people. Alissa my biggest twin and her friends came 1st in there school talent show by doing a dance and sarah and her friends came 2nd in the talent show. hope you are all well and happy from your new friend shirley.  =

Name: shirley • Date: 09/13/2007 20:43:21

hi VB We sent the kittens to the pet shop as we've got 3 cats already and 3 is the legal limit. we also have a new puppy we called it little angel. My smallest twin Sarah came second it the Japanese competition. Came eighth in the 2.5km. And 25 in cross country out of 72 people. Alissa my biggest twin and her friends came 1st in there school talent show by doing a dance and Sarah and her friends came 2nd in the talent show. hope you are all well and happy from your new friend Shirley.  =

Name: vb • Date: 09/14/2007 07:11:48

That's great, so I have to know, what did they dance to? I'm sure it was great, did you get to go? It's still warm here and finally raining, we've had a terrible droubt here in the south of U.S. I don't know what the limit is here for cats, more like twelve or something.?.? keep in touch  =

Name: roz • Date: 09/21/2007 16:25:03

hun, u make me feel a fraud. my only daughter just gone to uni & today found out am aboutto lose my home but thats nothing. u are so positive & makeme feel ashamed about the way i feel now  =

Name: lisa • Date: 09/21/2007 17:19:28

Mary never give up things and love one are put in our life for a reason. I have two boys that are sick also but I love them with all my heart you can e-mail me if you need a friend or someone to just say a word to amuc27615@yahoo.com  =

Name: shirley • Date: 09/23/2007 01:35:57

that's good that it rained she says she danced to let's get it started and S.O.S. It's school holidays and all the girls are home which means more cleaning we're not going any where for the holidays but we may go on some trips to the beach.  =

Name: Vb • Date: 09/23/2007 11:58:40

love the beach, but it'll be next year before we get to go. Can't wait the kids will be four and seven then! Enjoy the vacation!  =

Name: angela • Date: 09/25/2007 00:58:30

i am 15 years old and i have brown hair and brown eyes  =

Name: taylor • Date: 09/28/2007 18:35:11

i just need a frind  =

Name: Shannon • Date: 10/09/2007 22:43:04

hi...i am in the process of adopting my little boy....he was left at a home where they didnt even know his name while his biological parents went out and did drugs...needless to say they had him taken away and i was the lucky one who got him...he came in to my life at 8 months old ...he couldnt even sit up yet and didnt know how to eat.....well ive had him for over two years now and at age 2 we found out he had autism...i wouldnt trade him in for the world.. i have never felt more loved than i do by him ...i believe i am truely blessed ...these are very special children...thanx for listening...  =

Name: shirley • Date: 10/10/2007 06:07:09

hi VB how r u and your family hope you are all well we are getting really hot down here now the weather is reaching 33 degrees celcius and rising humitaty is shocking. I get head aches in summer. How r your kids mine are fine.

from your friend Shirley  =

Name: VB • Date: 10/10/2007 09:05:24

As fall weather approaches us here the weather is starting to cool off a bit (not much) Hope vacation was fun. I am already Christmas shopping. Kids are good. My little boy may eventually need a jaw distraction (break bone to extend it) hopefully that'll be a while away!  =

Name: shirley • Date: 10/17/2007 00:59:52

Hi VB sorry to hear about the operation hope everything goes well Sarah's staying home with tonsillitis and Alissa with a chesty cough.
From your friend Shirley  =

Name: tammy • Date: 10/17/2007 06:45:15

i wonder that myself ever day. my daughter has special needs and hurts me when my husband goes to work. i have a bite mark on my arm as we speak. i don't know what to do. she is 11 years old and acts ok when my husband is home. sometimes i don't know how much more i can take. my husband is the only person that helps. i feel kinda of bitter towards my own mother because she doesn't even offer to help me. she will spend time with my older son but not my daughter. i don't know what else to do. i cry alot and wish that she would be normal like all the other kids. but i know that will never happen. i don't have anyone who understands what i am going through. my sister in law says that she doesn't know how i do it , that she wouldn't be able to. i thought that was kinda of cold of her to say. i wish that i knew of a support group to go to. i'm sorry i'm an encouragement. maybe i just needed to let it all out to someone who understands what i am going through. i wish the best for you. if you need to talk please write back. just let it all out, sometimes that in itself helps.  =

Name: vb • Date: 10/17/2007 13:09:47

shirley, hope the girls are better! we don't even have a surgery scheduled yet, they may want to wait a couple of years or may want to do it now, who knows.?
Tammy, do you not have someone from Children's Rehab Services helping you? I couldn't do it all either. You need to google your state's name w/the words Children's Rehab Services. Then contact them so they can send people out to help you. I was told recently by the behavioral specialist and my daughter's preschool that ALL children need structure and need to learn consequence for their actions. Of course this was preschool and we were discussing time out...she said they stay in time out one minute per their mental age. Look into getting some outside help. You should be able to find some help at no cost to you! I will say that all kids would probably behave this way too if they could. Meaning, sometimes we don't discipline our kids or even know how to give them structure unless someone shows us, especially if they have a disability. I don't know where I'd be without people surrounding me, telling me what to do and learning how to handle certain situations. You're just doing the best you can w/out help so I'd suggest you find someone to help you. Your mom probably don't know what to do either. You need a professional to come by once per week or so and help teach you and if you already have this, you need to talk about these biting episodes so she/he can help you find a solution. good luck  =

Name: Shirley • Date: 10/22/2007 03:12:37

Hi VB how r u all? I hope you are all happy & well. Our family are fine.Today is a pupil free day and the kids are all home. We got our Siamese cat Melinda desexed (or to you in America neutered)last week. But she got into a cat fight and cost $87.95 for vet bill. They should be shot charging so much to fix our little felines. Well david (my husband) just came home so I've got to go. From your far away friend Shirley  =

Name: vb • Date: 10/22/2007 07:57:49

Shirley, funny story I had to share: My three year old was on the porch playing w/the cat. I hear a loud "reeeow" so I go check on the cat. My daughter was teaching the cat to write. She had a pencil stuck between it's "toes" and was was teaching it to write her name! Poor cat, she's fine though.She also gives the cat speech therapy just like she has. I'll hear her telling the cat,"say babebo". She has to do nonsence babble practice during her speech therapy. Anyway, thought it was funny.  =

Name: satish • Date: 10/29/2007 09:30:15

im so sorry to here this
i will pray for the god  =

Name: Samantha • Date: 10/30/2007 01:39:56

you need to talk, talk to me I'm on at iamsam1976@yahoo.com, I have 2 kids that are challenged to put it gently. I would talk with you because I struggle too with my life.  =

Name: jojo • Date: 11/03/2007 03:49:45

,n..,:'.  =

Name: sheryl • Date: 11/10/2007 05:34:10

hi, im also a mother of 2 i have a 2yr old daughter she is so beautiful and very smart i also have a 6yr old who is mentally only 18months with adhd and very bad behavior, he aswell is beautiful and very happy but also a big hand full at times and i know how you feel about the doctors appointments sometimes it seems just to much, me too have not much of a social life im a 25yr old single mom my grandmother use to help me with my son eg. give me a break but she died with cancer and i felt lost and alone i fell into depression now its be 2yrs since i lost her i still miss her and wish she was here, and yes i dont know how to cope at times as the people i do talk to dont understand because there not in my shoes they dont know how it feels and i hate when they say they do and when they say tomorrow will be better when i know it will be the same as every other day but maybe just a bit harder. i just want to talk to some one who is going through the same problems .  =

Name: sheryl • Date: 11/10/2007 05:41:30

hi mary sorry about my last reply and loading you off with all my problems i am sorry about what you are going through. im new to this i thought i had to write about myself not to someone im sorry.  =

Name: samuel • Date: 11/10/2007 07:47:29

Hi, i needa nice friend that i can chat with.  =

Name: L J • Date: 11/15/2007 16:10:58

HI SAMUEL MY EMAIL ADDRESS IS s.we.tie@hotmail.com we can be friend.  =

Name: caz • Date: 11/16/2007 18:45:37

i have a daughter in her first year at uni. has been a horriblefirst few weeks then a friends son died from meningitis this week after beintg at uni for 5 weeks. am just at a loss to know how to cope  =

Name: caz • Date: 11/16/2007 18:50:26

am so sorry darling for sounding so unsympathetic. it is sodifficult when u dont have any support or at least anyone to talk to  =

Name: obinna • Date: 11/24/2007 14:24:12

i want to sapken to my friends.who weant to my school  =

Name: tasheka • Date: 11/24/2007 14:26:37

i want to sapke to my friend  =

Name: obinna • Date: 11/24/2007 14:29:18

iwant tochat to them  =

Name: keely • Date: 12/17/2007 18:49:42

i want to make a friend and chat i friends but its fun make in them.  =

Name: KathyK • Date: 12/18/2007 08:52:56

Mary,
If you want friends you have come to the right site. We all know what you are feeling and it does help to find someone else who has walked in your shoes.
I have a 6 year old with O.D..D. and O.C.D. and we (my husband and I)don't have alot of friends either. It is hard to have a child with disabilities and alot of people don't understand. They just think your child is acting out and being a brat and that there is no discipline in the home which is so far from the truth it is not even funny.
We have been blessed by God to move to a developement and meet a few people and one family actually has a daughter with the same condition that my son has. Her mother and I are stay at home mom's and we bounce things off eachother and call eachother when we are having a bad day and yell, scream, cry or just talk whatever we need to do. My sister has a daughter with alot of the same issues that my son is dealing with so that helps too but if you don't have anyone in your area that understands it is hard. We are here for you and will try to help in any way we can. You can e-mail me at Ktola229@ptd.net if you want to talk, would love to try to help even just by listening.
It does get better over time and if you find the right resources to help out. We have been fortunate enough to find an agency to provide wraparound services that have workers come into the home and help us and him deal with his day to day issues.
I wish you luck and remember you are not alone  =

Name: nikcrik • Date: 12/18/2007 15:25:06

I am also new to this. I have twins who both have CP and are in wheelchairs. I live in a small town and I feel like i'm the only one. Would like to hear from others.  =

Name: shirley • Date: 12/20/2007 20:33:06

hi vb thanks for the funny story about the cat its stories like that that keeps me smiling its the little things kids do that make life worth while. Merry christmas sorry i havent written in a while I've been at a wedding in Sydney. Hope you have a wonderful Christmas and hope you are all well keep in touch from shirley  =

Name: vb • Date: 12/21/2007 13:14:45

Hey Shirley, was without power a couple of days due to a strange windstorm that knocked over trees and power lines here. I'm glad you got to go to the wedding, I'm sure it was spectacular. Good to hear from you  =

Name: shirley • Date: 01/03/2008 08:11:52

Merry Christmas and a happy new year hope you had a great christmas we stayed at my parents house for the night and the girls loved their presents i got some new clothes and a stuffted toy dog and a couple of books my father in law gave me $100 my little sarah one of the twins) gave me a dimond broach with her own birthday money. Hope to hear from you soon your friend Shirley  =