Click here to tell your story 10/02/2009
CommentsSandy Sat, 03 Oct 2009 06:42:52 I'm looking forward to hearing from other moms with special needs kids too. Maybe there is a way we could all introduce ourselves? Thank you Bridget - You are obviously a very sensitive person to families who have a special needs child. I appreciate your thoughtfulness. Michelle Hanna Sun, 04 Oct 2009 09:42:59 Yes, friendships are more difficult now. It is hard to know if others are not our friends because of our situation or not. We just moved to a new area and I have found that others often don't know how to befriend us. I was called to work with the youth in our church and was told it would be "good" for them because they were not sure how to handle my son with Cerebral Palsy. Huh? Yeah, that hurt. Anyone else have better experiences or have good wisdom on how to make friends? I love having friends and am very social (love having parties at my house, etc.) so I just keep trying but I will say it has become a lot harder because people are not as comfortable around my son. Anna Sun, 04 Oct 2009 10:42:46 I haven't really noticed any difference in the friends department, just no one wanted to babysit at first. I understand, but at the same time...I needed a break. They were nervous that something would happen. Brady was born with Spina Bifida, transposition of the greater vessles, hydrocyphalus, club feet and other illnesses. Now that he's 4, people are more willing to watch him, but they want in detail what he can and cannot eat (lots of allergies). He now has to be cath'd....so we're back to the beginning with the babysitting thing. No one wants to cath! Oh well! Mon, 05 Oct 2009 20:24:17 Well unfortunately I've had some not so great experiences in the friend department over the last two years! For the most part people have seemed uncomfortable at best! Or unapproachable? Maybe they were'nt sure what to say or how to say it??? Or have little to no understanding about Rows condition and the resulting limitations??? Expecting us to be able to do a lot of things that we just cannot do with Row! And I KNOW I'm guilty of pushing people away...I'm getting better but for the longest time it was very difficult for me to spend time with my friends who had typical babies! Which made me feel horrible! But to me they were a constant reminder of what Rowan was not able to do! On a more possotive note...some other friends were able to open up to me about situations they had been quietly dealing with...in some cases for years! I guess maybe befor Rowan came along I was one of the "unapproachables"! lol Tue, 06 Oct 2009 13:01:00 Amen, Angel! You said exactly what I have been feeling... and have felt guilty for feeling! I have avoided many of my friends with children my son's age because it is a constant reminder of what he can't do. I am TRYING to get over this because I want to be able to be happy for my friends when they have children and when their children do exciting things, but I honestly am not ready to do that right now. I have been dealing with my son's delays now for a year and a half with absolutely no diagnosis, so I ahve no explanation for why at 21 months he still isn't walking. To the naked eye, he looks "normal", so people (including friends) often say things like "he's really not walking yet??" not realizing that there actually is something wrong. Strangers are probably most guilty of that... I'm wondering when the time will come when I can handle the world (in relation to my son's delay). Natalie Tue, 06 Oct 2009 16:30:07 I am a 21yr old mother of a special needs child! All of my friends are at different places in there lives than myself! I cant really say that I have any true friends since Braydon was born! I have given up everything for him and try to do the best for him possible! A few of my "old" friends are having children now that are healthy and seems as though I resent them for what they have! As a single parent of a special needs child I find it extremely hard to date or involve my son in any type of relationship for fear of what they have to say or how they may feel uncomfortable! I have become a very bitter person! I am comfortable with having no friends and not dating but i have also developed trust issues involving my son! I am scared to let anyone be a part of his life,including family members! I don know if these are normal feelings, but i dont want them to affect my son in any way! Clara Tue, 20 Oct 2009 10:28:51 My friends have been wonderful. They are supportive, loving and caring. It's just natural that you are friends with people who share the same interests with you. In our case, our friends also have children with disabilities. One couple have chosen to be caregivers to people with disabilites. They have adopted a son with mild MR and have a niece living with them who also is moderate MR. These people also have natural, "normal" and very bright children. These are the people whom I admire most. They chose to "give" instead of take. Candice Sun, 08 Nov 2009 12:45:30 I'm glad I'm not the only one who is having a hard with friends and trust since having a special needs child.I'm going through a divorce and it is just me and my kids.Brady is my main responsibility right now.Making sure his needs are met is what is important.I no longer have friends and I don't really associate with people who have kids.It's hard but I've learned to deal with it.I have also given up on the thought of finding a relationship.I don't want to bring someone in my life because I'm not sure how they would react to my son and I don't want anyone around him that is negative. Jessie Mon, 09 Nov 2009 23:20:24 I have found comfort in connecting with other parents who have kiddos with disabilities. We just sort of "get" eachothers world. I have maintained close relationships with friends I had before my son, but it's painful to see them. There is an awkwardness there. Things are great when we hang out, but I prefer to discuss my son only briefly. I like it that way because they are my link to my former life before I had my son. Sort of keeps me sane. Then again there are times when I just want to scream to the world how angry I am about my sons disabilities. But I don't because I know that they will not validate my anger or sadness, but rather approach me with "bandaid" words to make me feel better and that's understandable. Brandy Tue, 08 Dec 2009 06:25:46 My friendships haven't really changed but I have come to realize just how much people who have "normal" children don't understand everything we deal with. My friends are concerned for my son and ask about him and want to know details about his condition but once I try to explain things, you can tell I'm out in left field. They have been very supportive but they have no clue what it takes to raise a child with a disability. And I'm with you guys on having sort of a resentment for my friends children. I go through those phases. But I also look at what life lessons he has tought me that my friends really haven't learned....like not taking things for granted. I've heard my friends say a millions times, "I wish my kids would just sit down and be quiet!" They don't realize how bad I wish my son could do those things! Sat, 02 Jan 2010 07:42:43 Am so pleased to find this site. Being a mum with disabled children I, at times, feel extremely isolated and reading stories from other mums is very comforting. My friends overall have been very supportive but like many people have lost friends too. No loss if that's what they are like! I don't know where I would be without my friends - a godsend. I hope to continue to visit this site and contribute in any positive way that I can Britanie Sun, 03 Jan 2010 23:36:25 Natalie, I know exactly how you feel. I'm twent four and single. For a long time my friends did not have children and they stopped speaking to me because Audrey became my life. Everything was about her, school five days a week, therapy four days out of the week. Now that they have children alot of them are slowly coming back around , but when they tell me of all the milestones their children meet and how excited they are, it's hard to be happy for them. All I want is to do is weep, because my own child has not met them and may not ever. I am also recently single and having problems telling men about my daughter. I feel the need to tell them early about her disability , it almost feels like a "lets just hurry and get this over with " moment. I guess I am just trying to test their worth and character ? Desi Mon, 11 Jan 2010 19:00:50 Hello ladies I really commend you all for sharing your stories. My name is Desi and I work with adults ages 18 and up with developmental disabilites at a beautiful residental community calked bishop Grady villas. I help them find jobs. So many people in the world are not aware of the talents my clients have and how important being accepted is to their personal development , just like everyone else. I'm the girl that knocks on buisness doors bringing awarness and getting them that job. From reading your stories I can see a common theme of fear of the future for your child. The world can be a cold place but please don't give up hope. I have heard so many beautiful stories from the parents of my clients on how difficult things were during the early years for their child. How each parent succeeded was by not measuring their child according to other neighboring children , rather being patient and creative finding different ways to teach thiet child ways to learn and how to enjoy life. Some children didn't walk or talk for years. But when they did at their pace, then they never shut up :) Julie Thu, 25 Mar 2010 23:16:53 I just wish people would ask questions and take an interest! Please don't ignore Aiden. I am shocked that I have not had more questions from family. They seem pretty ok with the whole thing, but I am sure they are curious. I wish that they would interact with him. He is such a sweet boy with a great smile! He is not scary, you won't brake him! I get the feeling that people are hesitant to babysit...but they won't tell me. I don't know why it is so taboo to ask questions? I can't say that I have really lost any friendships, but I sure wish I could find friends that have children with special needs. I would like to form a play group. 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