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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: Feb 27th, 2006 10:10 PM |
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: Mar 1st, 2006 11:04 PM |
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: Mar 4th, 2006 11:06 PM |
| 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: Mar 16th, 2006 2:36 AM |
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: Mar 16th, 2006 5:24 PM |
| I totally understand where you are coming from. My 7 yearold stepson is autistic. ↑ |
| Name: reenie | Date: Mar 16th, 2006 5:26 PM |
| 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: Mar 17th, 2006 5:13 AM |
| 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: Mar 25th, 2006 6:38 PM |
| Name: Carly Fulks | Date: Mar 31st, 2006 6:15 PM |
| 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: Apr 19th, 2006 5:37 PM |
hello,
how are you doing there,please mail me back i will help you out [email protected] will be expecting you mail.
cheers ↑ |
| Name: Rebecca | Date: Apr 21st, 2006 11:35 PM |
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 [email protected]. We can talk and get through all this together!! ↑ |
| Name: Westernguy | Date: Apr 22nd, 2006 5:15 AM |
| 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: Apr 22nd, 2006 5:30 AM |
| 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: Apr 27th, 2006 4:05 AM |
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: Apr 28th, 2006 6:47 AM |
| 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: Apr 30th, 2006 3:19 PM |
| 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: May 8th, 2006 9:45 PM |
| Name: Debbie | Date: May 8th, 2006 11:15 PM |
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 [email protected] 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: May 10th, 2006 5:51 PM |
| Name: mp3 | Date: Jun 20th, 2006 6:39 PM |
| Name: Michelle | Date: Jun 30th, 2006 11:07 PM |
| 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. [email protected] - email me if u need to talk. ↑ |
| Name: saravitale | Date: Sep 15th, 2006 3:55 PM |
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 [email protected] 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: Sep 15th, 2006 5:00 PM |
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..... [email protected]
write anytime ↑ |
| Name: sarahsmom | Date: Sep 17th, 2006 11:36 PM |
| 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 [email protected] ↑ |
| Name: tweety | Date: Sep 19th, 2006 12:00 AM |
| Name: sooty565 | Date: Sep 22nd, 2006 11:01 PM |
| 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: Sep 27th, 2006 5:11 AM |
| 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: Sep 27th, 2006 3:21 PM |
Mary,
I know how you feel as well, If you would like we can talk
[email protected] ↑ |
| Name: mommyinwaiting | Date: Sep 27th, 2006 11:51 PM |
| 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: Oct 8th, 2006 11:45 AM |
| 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: Oct 21st, 2006 3:10 AM |
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 ↑ |
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