I wish I’d never had a child. I get nothing from being a mother!( sorry had to edit that as someone obviously thought I was some sort of monster) no love or joy. I’m just a slave. Bum wiping, food making, drink fetching body slave/drudge.– Yvonne Sidewell
It’s a hardship that many will never understand. There will be good days amidst the hard days. I want to thank you for being such a great mom and for going the extra mile, that some won’t. I can say with all honesty, I understand!! He is fortunate to have you as a mom and despite how you might feel right now, he is your angel. He is an angel that needs special care and you are the special mom who can do it. Thank you!!!😊
Patti Coss From it? Do you have homes you can place your child in?
Yvonne Sidwell Patti Coss from being a mother I meant!
Patti CossYvonne Sidwell ok. Im,sorry . I’m having a hard time with my son being on break right now but I have never called him it. I thought that’s how you were referring to your son. I’m,sorry he shows no love. I am lucky I get hugs but today I’m,just getting beaten up.ManageLike · Reply · 1d
Yvonne SidwellPatti Coss and homes are few and far between and to look after my son you have to love him otherwise a person wouldn’t cope so I soldier on. 19 years next month. Hoping he can go to residential college next September but dreading it because I don’t wan…See More3M
Patti Coss I’ve never heard of residential college. I’m just starting to look into things now to prepare for the future but my son is only 12. Unfortunately because if his behaviors and the fact that he functions like an infant I’m not sure any place could take him. And mine watches sesame street over and over.
Yvonne Sidwell Patti Coss where are you living we are in UK
Josie ArcherYvonne Sidwell Will your son watch musicals? We’ve been watching Greatest Showman (an angel in this group recommended it), Sound of Music, Mary Poppins, etc. Or even videos of concerts. Would be much more exciting for you. Do your libraries in the UK lend out movies?
Yvonne SidwellJosie Archer no he won’t. I’ve tried, there is too much dialogue. He watches the Snowman occasionally at Christmas and Raymond Briggs Father Christmas rest of the time it’s Brum. It’s a yellow car that goes around a town helping people. Lots of slapstick and annoying tune
Tena Vance-Havican OMG said that soooooo many times. Was ok when he was very young, when you expect to be doing those things, now he is 29 and still doing the same stuff except now he is almost as big as me. Just hanging in there as long as I can or until hubby retires whichever comes first
Yvonne SidwellTena Vance-Havican even on here there are posts of kids doing stuff he can’t. He uses only one word at a time so if he says TEA and I don’t react immediately he shouts it at me until I respond.
Tena Vance-Havican mine says nothing, knows a few signs, can do a lot of things himself but most of the times makes me get up to do it/ I swear he punishes me sometimes by needing something every 15 minutes. As most mothers, we picture what our kids will grow up to be like. Ours never grow up. It is sad, down hearting and terrified of what will happen to him when I am gone.
Yvonne SidwellTena Vance-Havican sounds like my life. He’s yelling TEA now, I said wait so he’s hurled toys all over the place. So off I go to make TEA and I’ll have to pick the toys up now. I’m the same so worried about his future. I suppose I’m fed up at the thought of New Years Eve it always gets me down, families getting together and me stuck in watching baby tv
Tena Vance-Havican omg I cried Christmas day and the day after. The words No and Wait are his triggers. No plans for New Years Eve. My parents will come by New Year Day for dinner. They are the ONLY ones that have ever been part of his life.
Tena Vance-Havican I think because I lived with them when he was born, they were there when he was diagnosed and until he was 4 until I got married and moved away. They kept him in the Summer and Christmas break when I worked and about 7 years ago they moved near us now 5 minutes away. They are not healthy, my dad battles cancer and my mom has back issues. Someday soon I will be will lose my only respite then I will really be screwed.
Tena Vance-Havican Bless her, I had best friends that have never ever offered to stay any amount of time with him for me.
Yvonne SidwellTena Vance-Havican my parents have never looked after him even when he was tiny. My in laws used to up until he was about 8. They are too infirm now. Our Carer is paid through direct payment scheme in U.K. we were lucky to find her. I have a sister and my husband has a brother but they have never helped
I could get him in a day program but he doesn’t want to leave the house and having a stranger in my house is not ideal for me. We have 1 friend that comes a few times of year to visit. Lucky for me my hubby is my best friend and I enjoy his company very much. He is not my son’s biodad and I am so very blessed he chose us 25 years ago to be the people he loves. He and I cry together but most importantly we laugh together daily, usually over small silly stuff. But so looking forward to him retiring and US enjoying our golden years being together and hoping to travel. IF we find the right residental situation for ourson
Tena Vance-Havican him being away must be hard on you
Rebecca Gosling When you are havi g a baby you never think about it being less than perfect. That idea of perfection is damaging. There must be something that you can find a positive in? Just focus on those little things
Yvonne SidwellRebecca Gosling no there really isn’t. I used to hope there would be but in reality there isn’t. He loves travel and we enjoy taking him on holidays but in reality things are just a grind.
Lauren Marie Greene This feeling of despair is something only few can understand. It’s not fun. Is he a good candidate for a residential school?
Yvonne SidwellLauren Marie Greene the school have accepted him but it’s up to the local authority and NHS now. If they don’t agree to fund him he’s going to finish school in July and I’ll have to care full time
Lauren Marie Greene I’m really hopeful you get placement. Get an advocate to help. That’s what I did. Not sure where you’re located.
Lauren Marie Greene We were imprisoned for many years. Our son has been in residential care now for a year and some months and it’s the most amazing thing to happen to ALL of us! Myself, our marriage, and my other children as well as my son who is severe.
Patti CossLauren Marie Greene my school district would never agree. They think he’s fine at school, it’s challenging but they manage. However, there’s three of them and one of me plus he has 4 therapists at school.
Patti Coss doctor mentioned it, actually a couple doctors have….he’s only 12 but I’m really trying to figure out what is out there.
Lauren Marie Greene My son was in a 6:1:1 and being babysat because they couldn’t teach him. The advocate and all of our documentation showed proof that need was there. Get private Evals done to backup you up
Lauren Marie Greene My son is 12 as well. We were able to show the community could not support us either. There were no programs he could attend. Waiting lists.. he had no quality of life. It’s not just school and how they handle him… is he progressing? What about outside of school
Yvonne Sidwell (((Massive Hugs))) We’re all on this rollercoaster ride together. We can all relate to what you’re feeling. Thank you for being honest. I hope that you feel a bit better getting things off your chest. You and your feelings matter and are legitimate. There’s only so much a body can take…even a Tough Mama like you. Our lives are just so extreme: Dark, then Light, then Dark, then hoping for the Light again. One thing that stands out in the majority of your posts is your Immense, All-Encompassing Love and Dedication to your son. Your Love for your son leaps from your posts. Yes, you may have those feelings and complaints, but your actions toward your son are filled with love and devotion. You do anything and everything to make him happy. I LOVE that photo of your son on vacation in the water. You are a selfless, kind person. Your son is so lucky that you are his mama. What little things make you happy? Any little things that you can give yourself? I’m indulging in music these days (huge Rick Springfield fan). I lock myself in the bathroom for 30 minutes a day and listen to music…while my son watches his favorite movie and munches on cookies. Find something to take care of yourself daily…something special for you…you deserve it after all that hard work.
Stephanie Jones Schreiber Hugs momma.
Carla JenkinsYvonne, so many of us have felt that way. I’m glad we have a place we can go to say what few would understand. It can be so hard. I don’t have any answers, I just want you to know I understand how you feel. Hugs
Annabelle AnnabelleYvonne Sidwell i feel exactly the same. We live in malta but are hoping to relocate to the uk . Im hoping theres more help there and possibly put him in residential care when hes older. Have you looked into this? Any feedback?
Yvonne SidwellAnnabelle Annabelle do your research into where you are going to live. Some councils are more stretched than others and it will be them who you will rely on for funding. We are hoping to get our son into residential college in the Newcastle area with ESPA. They also do supported living for adults and we will consider moving to that area.
Julie Davies I live in the UK it took myself and my daughters social worker 5 years to get my daughter one to one which she has always needed she has been in a lot of respite places but was sent home because they couldn’t handle her behaviour even in school she wassent home for the same reason then finally we got her the one to one. She lives in her own house with staff on duty 24/7 the meds she is on has helped a lot she is not a zombie just a happy young lady she still gets anxious when out as she is petrified of dogs.
I was a single mum with health issues and she wasn’t on meds with me I was hit scratched she gave me a black eye it’s only when she moved in to residential that she is on meds I had her home for 3 nights at Christmas she was good as gold ok she has no patients at all and still very repetitive I don’t know if that helps you
Lisa Aagesen We understand and most of us have had the same thoughts at one time or another
Margie Goldberg Cohen I don’t know what we’re going to do when she ages out of the Maryland Autism waiver. So far, I haven’t actually seen anything I like that would be appropriate for our daughter. The turnover is terrible, so it seems like employers just hire anybody.
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