Positive discipline anti-smacking for disabled mothers/parents?

Sarah - posted on 11/11/2010 ( 21 moms have responded )

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I am a disabled mother of one, married, but i am young at 23 and newly disabled with a joint condition that increased in severity during pregnancy and I am now mobility impaired and have to use a wheelchair to get about places.

My husband is fantastic,he provides me with 24/7 care as i need and he is fantastic with our baby boy, a year coming up this month. However it is much easier for my husband to remove our son when he ignores 'no' which he does act on sometimes.

However when my husband is cooking etc and I am in the living room, door closed or baby crawls out to daddy, he will bang on the doors, walls etc do things that we dont wish for him to do due to potential risk of hurting himself.

So i tell him no and sometimes he listens or when he doesnt i try and distract him with toys in my reach and sometimes that works, but when they dont, my husband cannot use that door to come back in in fear of hurting him and as a mother it can be really distressing not being able to do things you planned on doing and could do before the pregnancy, i want to be there for my son and I am there for him but i am restrained from being able to pick him up, dance with him and other things and it can be upsetting and frustrating isnt the word and i want to know about things that can be successful for people who cannot be that 'hands on'.

id like to say no or something and have him do it, i will be honest me and my husband agree on everything and can compromise as we talk through everything and when it comes to our son we make sure we are a team in regards to disciplining him and we act together, so if mam says no dad says no and neither of us have taught him otherwise, so we understand as a toddler is learning a new world and pushing boundaries, children will act out and do things like this, but the point i am trying to make and ask (sorry)

is: what can i do as a disabled mother that cannot pick my son up and move him away from the door, there are disabled mothers that are single mothers with mobility impairments etc and they can bring up children successfully, but i am newly disabled and i would like some insight in how to make sure my son is safe, listens to me and in a way where he doesnt come to any harm or distress, we disagree with smacking.

Sarah.

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[deleted account]

I would suggest you replace that door with a gate, that way your son can see Daddy and you can roll over there and be with him too, carry on a conversation and such. my church has one like this http://www.toysrus.com/product/index.jsp... and it makes it easy for anyone to unlock it at the top and swing it into the room/out of the way.



I explained to another mother on another group that head bumping/hitting is a new phase in our kid's development. It's not something you can stop 100% of the time. Here's what I told that mother " It's a new sensation for their brains to process and each time they do it, their motor skills and senses are increasing in power. It's totally normal and will pass the first time they actually aren't paying attention and hit too hard. "



and I also included this which will help you redirect your son:

"Make sure that any instruction, correction or redirection you give her has a low note on the end. Drop that last one down to a lower vocal range... this is a primal vocal cue that these words are important and should be obeyed.



Practice: Come here baby ~~~see how high your voice is...

Now imagine she's running out in traffic and say NOOOOOOOOO~~~see how low your voice is. These are verbal cues she already knows and will accept if you always use them. "





Our galley kitchen has a door way with a gate we can step over. To avoid stepping on E, we have taught him the word "move" It takes a few days and some accidental steps on fingers and toes till he finally accepted the instruction as vital to follow.



If the gate isn't a option maybe you and your son can sit at the table for crafting time while your husband cooks. This worked for me. My middle boys could play with moon sand, playdough, construction paper, color or paint while I cooked and they were right there at the breakfast table in the kitchen til the meal was served up and we left the kitchen for an alternate dining area. One other possibility is varying his nap time so that he's asleep when your husband is in the kitchen.





as far as your husband participating in this discussion, I suggest he join this group as well as circle of moms

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[deleted account]

Awww, I love the nickname, Bam -- SO CUTE! Roxanne is 26 months (born Sept.11th/2008)....good 'ol 9/11! Definitely gives that day new meaning. Circle of life, right?!

We live close to Vancouver, British Columbia, Canada -- we just held the 2010 Winter Olympics here! You may have heard of us? LMAO! Anyhow, it's 9am right now and it's minus 3 degrees celcius and starting to snow. Typically it can be pretty rainy and despite what everyone thinks about Canada, it doesn't snow very much where I live. Some parts of Northern Canada do but I'm right on the westcoast, along the Pacific ocean.

Sarah - posted on 11/21/2010

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Thanks Dana, he has had a wonderful birthday we did everything we possibly could have for him and i cannot wait to update the pictures soon.

Jalpa, thank you so very much for your suggestions, my parents cannot help for personal and private reasons and robs parents live far away in which his dad is no longer in contact with him. Another long story.

We have contacted my support worker to organise some help with the house, and we will find out how much we will have to pay after tomorrow, when they do the financial assessment. That will give us the time we need, as we could not bear to put bam in a childcare situation, for personal reasons. He is very special to both of us and we would miss him, however what I forgot to mention is that my parents do help twice a week, they look after brandon for two nights a week, and thats helping us lots too.

We got so much more of the house sorted now and we are feeling much better for getting it done, although i wasnt a great deal of help, i did sit and organise through some things, and it did help Rob which made me happy.

I really appreciate all of your kindness, it means a lot to all of us.

Bam is our miracle baby and I am finally a mother, so I am really happy and i feel lucky to have Rob also.
It is not easy for him, and he wants to be able to fix everything that goes wrong, and it hurts him when we are in situations where the healthcare are not treating me with respect or dignity and Rob does speak up and gets frustrated when they do not listen and just accuse him wrongly of arguing. Not going into specifics we have been through several situations of trauma and the counselling is really helping to vent it out and cry it out, jointly for both of us. 2 years is a long time to wait for such help but it is still appreciated. Our full story i made as a blog as part of my support site for SPD sufferers and if anyone is interested in reading everything thats happened (all help and advice would be appreciated from those who are interested) its at http://pgpandspd.blogspot.com

The social services have not helped us much but are starting to a little now we have changed support workers, which is nice, and also now they are starting to believe in my disability, despite all evidence i have. So we are plodding along.

Yesterday we had my mam and dad over and my step grandma and my brother in the morning, and a friend came over in the afternoon. Bam showed them all how much he can walk now and err throw and drop things too haha, but he was as cute as ever.

He even ripped the paper off his presents, but got frustrated when we had to switch to another present as he wanted to play with the first so much but my mam was getting it out of its packaging. We had a mini cake for him to blow the candles out of and a thomas the tank engine cake so everyone could have a piece.

He got a range of surprises and he loves the tomy eggs and his trucks and his winnie the pooh spintop ball the most, but we also got him some childrens drums and play instruments.

It was really nice to have a day like yesterday and i cried happy tears upon going to bed, it was just simply wonderful!

I hope all your children are well and i would love to know how old all your children are. We thoroughly appreciate your advice and hope you have a great week.

The weathers cold and rainy over here in northern england but i hope its better where you are.

Much love!
Sarah, Robert and Brandon Lee (Bam) Dightam.
xxxxxx

Jalpa - posted on 11/20/2010

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I think u r doing well sarah.....with your baby and ur hubby...thats wat u can do for them...just try to take some help from othrs like ur parents or child care if u can so u can have also time for each other....u have to play with time only ..nothing else time will come and one day ur baby help u also...try to make him busy in grab the things..i alys do with my baby like bring that for me...yes i know they r not going to do that very nicely but still u can have fun from them..:) hope this help you

Sarah - posted on 11/19/2010

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I always had ear problems all my life, and throat problems all my life and i had my tonsils taken out and im still bad, its not nice and wish her better.



I cannot go out into the cold now because of my joints but also i have to wear earmuffs with cotton wool in my ears as the cold hurts them, but even before my disability.



I added Rob as a father to our son here on COM and he accepted via the email and COM gave him the profile he is using, however there is some confusion about the policies and possible deletion but he is rarely on the computer as he cares for me and our baby all the time, and COM gave him this, he has followed all the rules.



I find this extremely unfair and i have promised if he is removed i will have to remove myself and launch an official complaint.



Unless someone that COM gives a profile too breaks any rules, they should not be deleted. And if there is a problem (not that there should be as he is a gentleman and a carer and a good genuine father,) they should merely amend his profile.



COM should not be giving profiles to people they do not want to have specific profiles, not that Rob would care anyway its me thats highly against discrimination especially when someone is following the rules and has had no actions whatsoever that has caused any upset or emotional concern.



Thats all i will say on the matter right now as i have been extremely ill today and refused to go to hospital due to the problems i have, long story, anyway, i am very weak to be honest and i want to save energy and not be stressed as i do not wish to pass out today or tomorrow as its our babys birthday.



He will be one year old!



And i want to be well enough to ensure he has a good one and stress makes me extremely ill and pass out.



I love my husband dearly and i really respect him for taking the time out to say what he has and for all his support, he has dedicated his life to being my 24/7 carer and is bringing our son up too, with me, so he is an angel, a gentleman and a good man.



I also wish to thank Dana and everyone who has helped me and been so lovely to me, and Nikki for her support and I am sorry Nikki for letting off some steam due to stress in the email and i have explained also in your inbox, so please accept my apologies as I am extremely and severely ill today.



All my love,



Sarah xxxx

[deleted account]

Oh-no, Nikki -- she has and ear infection too? I had chronic infections and had tubes put in my ears when I was 4. Definitely not fun, for Isobel or YOU! Hang in there!

Nikki - posted on 11/18/2010

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I hear you with the teething thing, my daughter is 12 months and cutting her two front teeth, combine that with chicken pox and an ear infection and it's a fun fun house hold!!

[deleted account]

Awww, sounds like he's doing amazing. Sounds like you're ALL doing amazing. Rob, I think you're pretty special and Sarah is extremely lucky to have you in her life. If you ever need to talk or vent or just need some advice feel free to use her account to chat with us. Doesn't bother me in the slightest.

Robert - posted on 11/17/2010

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We tried distracting him today for example, it sometimes is much easier at times to put him in his chair and put baby TV on the television, as he enjoys the programmes on there, his favourite is Pitch and Potch's sound machine. We give him toys too.

He's doing well today, just frustrated at times because of his teeth, so we are doing all we can to settle him.

He is a good baby really, it would be much easier if I did not have a bad back, but we do what we can and he is doing great tbh, he is walking better now, and is far more confident with it, we are so proud of him, and he stood up and danced too to a song on TV :)

Robert - posted on 11/17/2010

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I support Sarah with everything, being her carer as well as Brandon's, we have tried distracting him again but sometimes it does not work and I have to go over to pick him up but he is not very naughty, it is just harder for Sarah as she wants to be involved so much more.

Rob, Sarah's husband, and father of Brandon.
(also 24/7 carer for Sarah) p.s. I love you Sarah :)

Sarah - posted on 11/16/2010

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Thanks so much, i cannot type much today, my husband is typing this for me, my joints have locked up so having a bad day - this happens from time to time so talk soon. x

Nikki - posted on 11/15/2010

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Sorry your feeling sad today Sarah, I just want to give you a big HUG! Your more than welcome to use this page as often as you like to vent or as for help.

Sarah - posted on 11/15/2010

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My blog is http://pgpandspd.blogspot.com and I am very sad today, as I complained about the severe lack of care at a local hospital and if the hospital management had have taken my complaint seriously a little boy could have been alive today, so my heart is with all families who have lost someone to lack of care by hospitals today.



Sorry to throw a dampner on this discussion but I think the hospital should have taken notice and I am very very saddened today.



That aside, I do however appreciate your comments, and they do make me smile so I will re-read them tomorrow and get back to you when I am indeed feeling a little better than I do right now, I just feel so powerless but I will be taking them to court, I have offered the stories to ITV, this morning and many other TV opportunities, if they had bothered listening then maybe some action would have been done....



NIKKI S, also you have some fantastic ideas I will put forward to my husband tomorrow too, that sounds like a better plan, ...



DANA also please feel free to add me to your circle, it would be a pleasure to speak with you at some point :)

Nikki - posted on 11/13/2010

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I agree with Dana, Sarah you have a fantastic outlook, good on you, your son is very lucky.

I have a one year old, cheeky little explorers they are, my daughter likes to explore the house too and I have found not only with my daughter but from working with many toddlers over the years that you will just stress yourself out by expecting babies/toddlers to listen and understand directions, their need to explore is much greater than their ability to listen to directions.

I have found, particularly with my own daughter that rather than focusing on what I don't want her to do, I redirect her attention in a positive way. If she is somewhere in the house I don't want her to be rather than removing her or saying no over and over and over again, I try and encourage her to either come to me or participate in another activity. I use lots of songs, books, puppets, musical instruments, pots and pans, ANYTHING that will grab her attention. Is your son standing up yet? could you have a little table next to you filled with toys and objects which encourage you to interact with each other more? Peek a boo is another great attention grabber. But overall singing is a great activity that you can do together, by the sounds of it you need something that you can share together. I can't imagine how difficult it must be for you, you are not failing as a mother, it is very clear from your post and the email you sent me that you love your son and you wan't the best for him and as mother's regardless of the restrictions we have within our lives, this is the best that any of us can do. I can imagine how frustrating this would be for you, just remember how quickly they grow, before you know it he will be up and about and able to physically interact with you more.

As I said in my email, regarding your husband if you wish to share the information with him you are more than welcome, but unfortunately COM is for mums only.

Sarah - posted on 11/13/2010

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Dana,

thank you hunni,
yes its lifelong, but i keep saying to myself atleast its not life threatening, i cannot lie it is so difficult and i did go through depression and suicidal tendencies but i have beat it all. there are some other real problems that the becoming disabled caused which are all in my blog, things that are serious like malpractice, clinical negligence and so much more... and it did make me feel like my husband and son would be better if i wasnt here, so thats where the thoughts of suicide came from.

I have to deal with chronic pain daily, all the time, i never get a break tbh, im on allsort, morphine 240mg daily, nerve blockers 600mg pregabalin maximum, naproxen 1g, paracetamol, ibuprofen gel (ibuleve), buscopan etc all daily, and it is hard as it doesnt take all the pain away.

I appreciate what you have said Dana more than words can say as i have ran the support group for the 2 years i have been disabled and with the help of my husband (as we dont get much help from anyone else) i have got to the point now where i just want to be a good mam and want to focus on that and i have made sure my attitudes changed as i have to accept whats happened, i mean we saw a counsellor after a 2year wait now and she said i am grieving from my old life etc as i have lost 'myself' really, i am finding a new me, although its still me i dont know who i am fully anymore, and has said this is normal and dont be ashamed, yet the 2 years all the healthcare and everyone else has been putting me down for doing exactly what she said was a normal pattern of grieving...

.... i am trying to prevent what we went through happening to others, i mean we had no food no nothing, homeless at 35weeks pregnant in the UK because the DR refused to tell the DLA about my SPD so it was delayed, although it was backdated it was too late, we had lost my business everything and had to sell things etc... we had no cooker, no fridge freezer no nothing, and the rotary club charity helped and we are so thankful for our food hampers, but the midwife should have helped with healthy start which she never told us about....

i dont wanna get into specifics as they are all in my blog, but i am going to try and start a charity and make a difference, i am always happy when people come on my support group and say their dr helped them and i am happy to provide other help for them, but i am here to prevent the 1 in 4 pregnant women that are 'normal' that develop Spd from becoming disabled from birth, because the midwife didnt know the do's and donts of SPD.... people need to know about SPD and need to know that everyone that gets it are mobility impaired to some degree, crutches, wheelchair, both, doesnt matter, it takes away your self esteem, your independence right at the moment your about to have a child, may be your 1st, 2nd 3rd or more, doesnt matter, its still really hard and those people need support, not abuse.

And i want to make sure they get it!

My support group means everything to me.... but i came on circle of moms, for the first time, to ask for some help for myself, i try to appear strong but the fact is i do need help, but with bringing up my son as a disabled mother.

It was easy for our local post office to prevent me using the disabled desk and the manager to say why cant your husband post the letter for you, but its exactly the same as where i am as a mother, i have a right to post my own letters and i deserve for that right to not be taken away from me, the desks there if im allowed to use it, and all i want is to be allowed access to the techniques and information and support to be able to be the best mother i can be, so i can take more of a part in the upbringing of my own son, as i had dreamed of prior to the pregnancy.

He is a miracle baby i forgot to mention i was told i couldnt have kids, and hes here, and i love just staring at him, watching him play,laugh and i just melt inside, he is the most amazing thing to have happened to me and my husband after trying for 2 years prior, and hes here, and although were in this situation, i just want to be a good mam.

i want him to know he is loved, which he does,but i want to be able to get round the mobility obstacles in his upbringing....

Thanks Dana,

Sarah xxxx

p.s. any info put forward is always appreciated even if it may not be applicable or possible for us, we are so thankful for someone coming forward and showing us some time, thanks xxxx

[deleted account]

Sarah, I don't know that I have any real advice but wanted to offer my admiration. You seem to have a great attitude. Is your condition permenant?

Sarah - posted on 11/13/2010

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Hi, i appreciate your response but this is a council house and the door in question leads to a hallway and not exactly into the kitchen.



I failed to mention that I have worked with children a long time, in schools and i worked for the NHS for a year with L.D. children and adults and I understand vocals etc. (prior to disability - had for 2 year now)



When i am in the house, i am on the sofa with the help of my husband, i cannot pick things up from the floor etc and the house is very small, i only go into my wheelchair with help of husband when he brings it into the living room, and helps me into it, so i can drive it to the outside. (only when we are going out and he has our son in the pram ready)



Our son is turning 1 this month.



I cannot bend down so i have a helping hand (grabber stick) to pick things up from the floor and i cannot roll or walk over anywhere without the help from my husband. I have hypermobility syndrome, spd, diastasis and potentially Ehlers Danlos syndrome type 2, all confirmed with exception to EDS which further tests going on.



We do as much as we can, i was also doing a psychology degree and i have experience with psychology in children, bowlbys maternal deprivation theory, mary ainsworths bobo doll, the behaviourists theories etc, the problems that i face at this time is the mobility impairment.



We are not able to change the door, and if we did put in a gate i would not be able to get into my powered wheelchair and get through the doorway in an emergency, and it would also be a restriction for ambulance assistance and carelink aswell.



He is not head banging as such, he is banging his hands on doors and walls and were just scared he will fall as he likes to stand around those places and as his dad can move him away, i cannot.



Is there anything about mobility impaired mothers or joint disabled mothers perhaps?



I wish i could sit at the table with him and do things like that but i cannot, my joints lock up a lot of the time and i am in constant pain, if he got distressed in his high chair, being 11 months as he is, i could not do anything about that.



I need help with everything i do and although my husband can leave him with me now and again when he uses the loo or kitchen stuff/cleaning if he is going to be gone a bit longer than 5 mins he puts our baby boy in his high chair with the legs taken off - converts into a small childs chair. And he is fastened safely in.



However i hate that this can distress our son and he cries and things and it makes me feel like i am failing as a mother, as i have all this knowledge and experience but none of it as a disabled individual, as i have been now for 2 years.



It does make things very difficult and it does hurt inside, as i became disabled during pregnancy so there was nothing really we could do, and i did have a difficult time when our baby boy was a few days-weeks-months old, and my husband needed to go to the toilet or something else and he would cry and i couldnt pick him up then.



Our house has only just been adapted by the services to help people like us, but we have only been given a stairlift and the bathroom is finally accessible as they have taken down the wall in the middle so my husband can help me with toilet and hygiene issues. so we have had a long wait tbh, 2 years i havent been able to use the only toilet and bathroom in the house. Although when i could we went to my parents house for hygiene purposes (we dont have any transport as i was close to passing my driving test early pregnancy and then couldnt sit it as became disabled) -hubby cannot drive (other issues)



The doorways are quite narrow and have not been adapted we were not given any of those options for other adaptations and its taken 2 year for the stairlift and bathroom/toilet adaptations, we had to live and sleep in the very small living room prior to that as i couldnt access the upstairs and i need support to help be turned over, help to sit up etc, during the night. So really 24/7 care... which my husband does provide, i cannot even put covers over me if they come off. its difficult when you have had your own business at 21 year old (photography) worked for a dr that did the dementia helmet for sir terry pratchett at the same time as running the business and on top doing lots of charity work, and i have lost all of that, including the ability to walk, bend, use stairs and much much more.



2 years sound like a long time but its still very raw,

but i run a support group helping women with spd and disabilities and pregnancies and all three at same time too... but none are disabled and so i have no one to discuss the extra issues the disabled face with.

You can find all i went through as well as spd info, support groups ect at http://pgpandspd.blogspot.com which is a charity site (im not a registered charity yet but i am working on that) this is voluntary basically and its a support group thats helping over 634 people at this time.







Thanks so much i do appreciate you taking the time to put the information forward to us.

Sarah - posted on 11/11/2010

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My husbands on here now as father of our baby, which he is, lol, but the problem is he was wanting to discuss this with me and others and circle of moms keeps redirecting him to friends childrens pages, any ideas anyone? Anything he has to do? He doesnt want to monitor friends children as it will not look good and is not in his interests he is on here to support me and baby. Facebook has allowed him to like this page on there but not access it.... can someone help because i do like him being involved as a father and i dont like things shutting him out, i know how i would feel if i was shut out of my childs page etc... its not fair.

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