Disabled causing disability

Disabled causing disability

So Iv been mulling this post over for a while, I’ve been wanting to put these thoughts to words but have always held back, I wasn’t sure if I should but this is my blog and I’ll cry if I want to. Essentially it’s my space to do with what I want so here goes.

These days the media aren’t afraid to portray the disabled, whether it be through programmes such as the undateables (a sensitive and debatable programme to many) children in need, your average channel 5 documentary but what I have noticed when watching these is they don’t seem to be an accurate representation of life ‘as is’, at least not for everyone. They do exhibit the trials and tribulations of everyday life for the person in question and the high and lows but there is another part, a part that is rarely spoken about, and that, is everybody else. Admittedly the role of carer is starting to be recognised, especially that of young carer and there are a lot of brilliant support groups and charities out there aimed at helping carers. But for the most part imagethere is more to having a disabled child than we see. Having a disabled child affects the whole family. We are just wary to admit it, it doesnt after all feel right to even hint toward a moan when there is someone much worse off than you, I know this on a very personal level.

My younger brother James was born with severe brain damage, he has, from birth, been severely disabled. He is now 25 years old and requires full time care, he needs somebody with him 24 hours a day to cook, clean, guide, take him out, to basically do everything. He is the mental age of a 1 year old, in a mans body. Growing up, I never knew any different, he was my brother and his disability was nothing to me – I mean that with love, I mean that it was normal. Even as I started going to friends houses and met their siblings it did not occur to me that there was anything different. But there was. As I got older and I’m talking my late teens/early twenties I really started to appreciate just what it meant. It ended up having a profound effect on me, eventually.

His disability was not known at birth. It was as he grew that alarm bells started ring. He slept a lot and I mean ALOT, once he slept 17 hours without waking for a feed, ring a ding ding goes that alarm bell. He didn’t meet milestones, he couldn’t sit when he ‘should’ or smile when he ‘should’ then one day he had a seizure, not a febrile one but an unexplainable seizure. He was months old. It started to become apparent that something wasn’t right. As a parent I look back now and think how scary this time must have been, the unknown, the worry – it must have been consuming. Following a plethora of test on James, my mum and my dad, genetics, disease and any form of ‘illness’ were all ruled out. He had a very quick (30 minutes from start to finish quick) birth, he was born in an understaffed hospital in the early hours of a Sunday morning, he was blue at birth and the cord was round his neck. He was diagnosed with newborn asphyxia.

As mums we read and write (I certainly do) a magnitude of blogs about how hard it is raising our babies, and it is! It has however occurred to me of late that  my mum raised a baby for 18 years. He always needed her the way my babies need me now. But he grew, he became harder to lift, harder to control, harder to please but he still needed her. His imageneeds started to outweigh her needs. As the years went by, friends drifted away and her focus of looking after James took away her focus from looking after herself. It starts with missing hair appointments, social occasions, parents evenings but it grows it becomes dental appointments, then doctors appointment and suddenly things get serious. To complicate matters, she had a third child, my sister. My sister also struggles with disability. She is physically able but she is socially and mentally disable.

Since becoming a mum I am so acutely aware of how hard this must have been for my mum not just physically but the mental anguish must have been immeasurable. She is now just over 50 and has had two heart attacks and a whole host of medical complaints I will not list, she is unwell, the sad irony is she is now the one who needs care. I have little doubt in my mind that this was born out of the years of putting her children first. Of taking care of their every need, day after day year after year before her own. As parents we all do this, it is in our nature, but for most of us our children grow, we take delight in watching them achieve their milestones, when they learn to do things for themselves and our hearts explode when they voluntarily cuddle us. But for many family members of the disabled this simply does not happen, you do not witness the excitement of Christmas or holidays, you don’t get that affection or, God forbid, that freedom that comes with a growing offspring but they dare not moan, for they are able.

I have the greatest of respect for all mummy’s doing their best by their children and this isn’t a belittling of motherhood (far from it), nor is it a pity party (even further from it). I am simply tilting my hat, giving an acknowledging nod and screaming at the top of my lungs to all those who have or are living with and raising children/adults with disability. You have an often incomprehensible and thankless job, you have an unwavering love and you deserve the utmost of respect. Our country quite literally needs people like you. You endure so much and it is ok to find it hard, to need to vent, to look at other families and think what if?  I know this post had been largely centered on my mum but it is not just mums and dads to whom the above is applicable, but siblings, grandparents, aunts, uncles, step parents, everyone is effected, everyone has a part to play and everyone is allowed a time not to be ok even though they are able, I say this from experience.

If you can relate to any of the above there are places offering help and support, here are just a couple of national links that may help point you in the right direction. Alternatively I find a good place to start for local support groups is your local authority. 

https://www.carersuk.org

https://www.gov.uk/carers-uk

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James and I Christmas 2014

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41 Comments

  1. March 18, 2016 / 6:23 pm

    This is truly a beautiful post. I for one am glad you decided to post it! Xx

    • March 18, 2016 / 6:24 pm

      Thank you, very nice of you to say x

      • March 18, 2016 / 6:38 pm

        You’re also not too far away from me… I’m yet to do an about me section but I read yours and I’m from Cannock but moved to Wolverhampton…. And I found your tips for flying post extra helpful as we’re off to Ibiza this year with a 19 month old! X

      • March 18, 2016 / 6:43 pm

        Oh way very close! I’ll head over and check your blog out now. Glad it helped! Hope the flight goes well and you have a lovely holiday. Have you got a Twitter account? Always a good way to connect xx

      • March 18, 2016 / 6:48 pm

        Awesome thank you :-) yeah it’s @hdla__ ! Xx

      • March 18, 2016 / 7:06 pm

        I couldn’t find you, I’m @tammymumuk follow and I’ll follow back :) xx

  2. March 19, 2016 / 6:04 am

    A beautiful post Hun. Well written and well said as I agree we tend to focus on the person with special needs and forget the effect it has on the other family members. I have wrote a post to my ‘neurotypical’ son about siblings needing support too as I don’t want him to ever feel he isn’t important too. But as a mum you are right your needs always come second and it is do important to take time for yourself. Thanks for highlighting that X TY 🌸

    • March 19, 2016 / 8:12 am

      Thank you, I hope your son reads his letter and appreciates everything you say, I’m sure he will. It’s tough in the whole family, everyone needs a little me time every now and then. Thank you for your comment xx

  3. March 20, 2016 / 9:49 am

    Wow what an incredible read. I can only begin to imagine what your mum must have gone through during all those early years and how tough it must have been but you’re right, we are parents, what else can we do but love and care and protect our children. It doesn’t matter how long they need us for, we will be there for as long as we can be. #kcacols

    • March 20, 2016 / 12:17 pm

      Yep that’s pretty spot on way to sum it up 🙂. Thank you for your comment xx

  4. March 20, 2016 / 11:41 am

    What an inspirational lady your mum is. It’s so nice to see all of the love that radiates from this post and I hope that it gives others in similar situations a little boost to know that they are appreciated, even if they don’t always hear it. #KCACOLS

    • March 20, 2016 / 12:16 pm

      I certainly hope so to. Thank you for your comment xx

  5. March 20, 2016 / 3:32 pm

    Beautiful post. I was a young carer and as you say it has a very profound effect. Thankfully there are support avenues available, but it worries me how many of these are being cut at the moment. A really great post, thanks for sharing #KCACOLS

  6. March 22, 2016 / 5:08 pm

    This is such a beautifully written post. Thank you for sharing and highlighting this. You’re right carers are often overlooked. Hopefully this posts helps them know they are so very much appreciated.

    Thank you for linking up to #KCACOLS and I hope to see you back again on 2nd April when the linky opens again.

  7. March 23, 2016 / 8:49 pm

    Great post, really good. I work for a pharmacy and we’re try to help the carers as much as the disabled because we know how hard it is to look after yourself and someone else.

    • tammymum
      March 23, 2016 / 9:44 pm

      That’s really good to hear! Thanks for your comment

  8. March 24, 2016 / 12:12 am

    Very moving. Yes. I think it is hard to comprehend how different it must be to be caring for someone who is not progressing towards being able to look after themselves, but will always need to be cared for at the same level. #abitofeverything

  9. March 25, 2016 / 10:16 am

    This is a powerful and well written post. I am glad that you have highlighted the role of the carer and everyone else who is involved in that circle, supporting the individual. There should be support for the carer as well and that often slips under the radar. Thanks for sharing with #abitofeverything

  10. March 26, 2016 / 10:49 am

    That made me well up. Thank you so much for your kindness to carers everywhere x

  11. March 28, 2016 / 2:13 pm

    I do think this is a lovely post well written and thought out. I can not imagine what your mum has had to go through or what other parents with children with disabilities have to on a daily basis. We will be meeting our second born in a few weeks time and the one thing I wish for above everything else is a straightforward birth which keeps him safe. Having one makes me appreciate it so much more. Raising the profile of all the people involved in supporting the individual is brilliant lets hope society continues to do more too, Thank you for joining us at #BloggerClubUK hope to see you again this week x

    • tammymum
      March 28, 2016 / 9:30 pm

      Thank you for your lovely comment. All the best for the arrival of baby 2, what an exciting time for you and the whole family. Enjoy every minute :) x

  12. March 30, 2016 / 6:46 am

    A beautiful post lovely. Parenthood is hard enough as it is let alone with added pressure.I will join you in tilting my hat is recognition and respect. Excellent read!

    #tribesters & #marvmondays

    • tammymum
      March 30, 2016 / 7:36 am

      Ah that’s lovely thank you xx

  13. March 30, 2016 / 7:54 am

    This is such an important thing to talk about and it is one of the reasons I feel so awful having MS, because of the effect on my husband and daughter. Thankfully there’s a great young carers scheme here so that’s a relief, but it’s hard on the whole family.

    • tammymum
      March 30, 2016 / 7:59 am

      It is important but you should no way shape or form feel awful!! It’s tough on everyone involved and I’m glad you have family and support to help you through ???? xx

  14. March 30, 2016 / 9:31 am

    Beautiful post Sarah, I don’t think anyone realises striaght away how much their mums have given them or been there for them….your perception now with these added challenges she faced is lovely and your highlighting of the role of carers is really important. Really glad this was a featured post on #bloggerclubuk x

    • tammymum
      March 30, 2016 / 10:39 am

      Thank you that is such a lovely comment. Xx

  15. April 2, 2016 / 10:38 pm

    A really lovely post that I wholeheartedly agree with. Carers and parents of disabled children and adults are unsung heros. They give so much so selflessly and wholeheartedly out of the love of their hearts. I can relate to this post having two disabled parents, one who is totally dependent on full time care which my sister has selflessly given. She and your mum are one of so many people out there like them that do so much to support loved ones and posts like these such a lovely tribute to them and everything they do. Thanks for sharing it on #MarvMondays. Emily x

  16. April 4, 2016 / 7:54 pm

    Incredible post, beautifully written and a topic that isn’t talked about enough. Thank you for sharing your family’s story, your Mum sounds like an absolutely incredible woman #bigpinklink x

    • tammymum
      April 4, 2016 / 8:05 pm

      Thank you that’s a really lovely comment :) xx

  17. April 4, 2016 / 9:25 pm

    This is such a great post Sarah. I’m really glad you decided to write it in the end and i completely agree that parents and carers of disabled/SEN children and adults deserve more merit, support and love from all of us.

    #bigpinklink

  18. April 7, 2016 / 9:09 am

    Wow, a beautifully honest and raw post-and something that definitely needs attention. It’s absolutely unimaginable what your mum must’ve gone through, or is still going through, with 2 disabled children to care for-something that is clearly now reflected in her own ill health. I used to be a community nurse, and often visited mentally and physically disabled patients. Apart from keeping certain health conditions under control, and them needing the odd dressing/injection/blood test etc, the patients themselves were usually quite happy. But the times we had to intervene to get emergency respite for carers who were not getting any sleep, were ill themselves, absolutely at the end of their tether, and sometimes we encountered those who attempted suicide, happened more often than needing to actually do anything for the disabled person. It is definitely something that needs addressing.
    Thanks for bringing this to #bigpinklink.

    • tammymum
      April 7, 2016 / 10:00 am

      Wow what an experience that must have been, sadly it doesn’t surprise me that it was more often than not the carers who needed help. Thank god for people like you who were they to help! Hopefully things we starting to improve ey. Thank you for your lovely comment xx

  19. April 7, 2016 / 11:05 am

    What a great post and well done for writing it. I am a mum of a special needs child and can see how your mum put her needs second. I hope she is doing okay and she is lucky to have you. I am going to share this with some of my friends as a little reminder to be a bit “selfish” sometimes. Thank you #coolmumclub xx

    • tammymum
      April 7, 2016 / 6:20 pm

      Thank you that’s very kind of you. I hope it has the desired effect with your friends and both you and them do put yourself first for a change :) xx

  20. April 8, 2016 / 9:56 pm

    Lovely post. What a strong woman your mum must be to have cared for you all growing up. x

    • tammymum
      April 9, 2016 / 8:06 am

      Thank you, she was yes ???? xx

  21. April 11, 2016 / 11:20 am

    This is a brilliant and difficult post to write. I actually think you mirror the thoughts of many – it can be difficult to put it into words without sounding condescending but you have definitely managed to word this perfectly. Thanks so much for linking this up to #coolmumclub lovely x

    • tammymum
      April 11, 2016 / 6:51 pm

      That’s a really nice comment thank you :) xx

  22. October 2, 2016 / 8:51 pm

    Sarah,
    This is such an important blog post. So powerful and moving. I feel like my comments won’t be able to do it justice. It really had an impact on me. Thank you for articulating it so well. There is so much bundled up in all of this…How the ripples of this story of disability and caring can impact families and chance the course of lives. As others have said, parenting is tough enough without having the added complication of the need for lifelong care and support.

    I will be thinking about this for a long time after I click away. Thank you for sharing this very personal post. #spectrumsunday

  23. October 14, 2016 / 6:57 pm

    Lovely post -I’m actually a trustee of a local charity that supports the whole family that includes a disabled child. Although it obviously doesn’t stop at adault hood they are as concerned with supporting parents, siblings as the child with additional needs. Today for example they offered free massages and relaxation clinics to parents. It is important and carers are vital to our society. Thanks so much for linking to #spectrumsunday