How a year can change things.

So I decided to brush the cob webs off and try write today,

I started this blog when Archie turned 5 to talk about what it was like bringing a child up like him and the journey us special needs parents go on,  for a while it helped but eventually I felt like I was always ranting about what the local authority wouldn’t do to support us.

Last year was hell for me but not hell due to Archie well not direct anyway,

After all the fights I went through to get the respite I felt we needed as a family my actually family fell apart a few months after we received the support package we needed, how ironic.

In fairness we should have stayed separated when we split 4.5 years ago but we didn’t , regardless of the ins and outs of what went on and the lies and deceit I have come out of this happier and stronger than I have ever been.

But last year I was in such a dark place, a place I never want to visit again, I didn’t want the world to carry on I just needed it to stop for a while, I had my eldest who was wishing he was dead, I had Archie to look after and at the same time I was trying to deal with my own illness, I say illness because that’s what it was, I was suffering badly with depression and Anxiety so I checked myself  into therapy, I wasn’t eating was only drinking very little and the weight was dropping off me fast, but within 5 weeks of actual receiving therapy I was feeling positive again, I was out running and slowly eating again. I surrounded myself with good friends and accepted the help that was offered, I took time out from my voluntary roles as a parent rep for both charities I worked for and concentrated on having fun with my amazing boys. This was not plain sailing it came with lots of troubles and tribulations and at times I wanted to give up again, if I am honest I also considered my boys would be better off in care, having a child with complex needs is difficult at times but what I was finding the hardest was dealing with Leon and his emotions he was in a dark place too but the help was hard to get because of course he is a typical child what problems could he possible have, we eventually were offered camhs (child mental heath service) to help Leon address his own issues but he wouldn’t engage he took his anger out on me instead saying he could because I will not leave like his dad did. watching your son suffering with anxiety and possibly depression and comfort eating broke my heart more than anything I really didn’t no what to do if I didn’t have the support of some amazing friends to talk to and the support group SWAN UK life could have been different for us, I was strong for Leon while they were all strong for me I thank you all.

Just when I felt things were moving forward things kicked off again and Leon refused to see his dad, and also his grandparents just another blow and support taken away, those who know me well no I don’t have family support my own mother passed away in 2007 and my dad was a very poorly man . with support again and advice from others I dealt with this and again we moved forward and learnt to cope in a different way. Not long after I had the biggest blow ever,  my wonderful amazing father, my friend my dad and the only man to ever truly look after me passed away, my heart broke and I crumbled again, I wasn’t sure how much more I could take , how would Leon cope , how would I explain to Archie, would he understand 101 questions running through my mind, at this point I was hoping that my ex might step up but I saw no remorse from him at all and again I had to rely on friends and the local authority to put support in place so I could  arrange my fathers funeral and attend it without the worry of dealing with Archie and having to meet his needs, I am so grateful for the LA respite centre, Grief is strange and we all deal with it differently, I watched my own extended family members fall apart too and my dads passing was effecting all of us, he has left a major gap in my life that no one will ever fill and in others life’s but as a family we have all pulled together and this brought me a little closer to my own family.

Taking the year out from been a parent rep, and also stepping back from the world of special needs and disability and just enjoying having time with my boys planning trips holidays and looking at what we can do rather than what we can’t and having complete control over what we do as a family now we are a 3 has been fantastic we have become closer than ever and now I can see a brighter future for us, I am not sure how I got to this place but I no I wouldn’t be here without my amazing friends and Facebook support its kept me going.

This last 3 months has been the biggest change though Leon seems happier, Archie is doing well in school even though still having the strange episodes of attacks and still waiting for neurologist appointment, and I have met a fantastic man so life right now is feeling great and the future looks bright.  I am still not sure what it is and where it is I want to be but learning to  find myself again and who I am is fun right now , everything else will wait right now making sure both boys are supported in a way they need to be and I have the support I need then we can carry on because one thing I have really learnt the only thing that is important in  life is the right to be happy.

Things we take for granted

Today I took my little boy to a petting farm, we had lovely weather and it wasn’t very busy so that was good. I took him out of his wheel chair and went to sit him on a swing, he can sit and stand by him self but sit him on a swing and he can’t hold his own body weight bless him, I don’t no why it’s a skill he has never learnt, he has complex learning difficulties and many other things going on but over all he is undiagnosed with a genetic condition. I looked around and watch the other child on the swings and for that spilt second I wished for my child to be like them. It’s the little things that ppl take for granted that they will never understand . I still helped him have a go even though I knew it would involve lifting it would hurt my back but I didn’t care. Had that been a carer then they would of had to do a risk assessment and he would not of had the experience I am glad I just give him those opportunities who cares how hard it is life is hard and he won’t learn if I don’t let him try


What’s the point of a parent carer’s needs assessment?

Originally posted on rightsinreality:

In all the excitement of Care Act Day, it is important not to lose sight of the fact that important provisions of the Children and Families Act 2014 for parent carers of disabled children and young carers also come into force today (1 April 2015).

I plan to blog about the duties to young carers contained in both the Children and Families Act and Care Act shortly. However this post aims to answer a simple question which I have been asked a number of times – what’s the point of the new parent carer’s needs assessment (PCNA) introduced by section 97 of the Children and Families Act?

One thing is crystal clear – there is no new right to services for parent carers of disabled children, as there is for family carers of disabled adults under the Care Act. What we have for parent carers of disabled children is…

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An Alternative Social Care Dictionary

Originally posted on Love, Belief and Balls:

The other day on the train i eavesdropped two guys entertaining themselves by composing an “alternative” handbook for their business. They found their own ideas hilarious. I had no idea what their work was because the language was beyond me. But it got me thinking.

Yesterday I posted several tweets offering my contribution to an Alternative Social Care Dictionary. It must have struck a chord because I got 78 new followers in 2 hours. It got a fair bit of criticism as well with people commenting that I was too cynical, unfair or didn’t understand some of the things I was writing about. The last point, I felt, proved my point. That most concepts and language in social care is impenetrable. I’ve also learned over time that the actualisation changes around the country. So personalisation in Dunstable is a very different kettle of fish to personalisation in Dudley. Social care…

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“Life is a rollacoaster you just after ride it”

So I am dusting of the cob webs and writing my post today for undiagnosed children’s day and you can check out what’s going on everywhere else today too  ‪#‎itsamystery

April 2006 just a normal day on the market stall when serving one of the stalls oldest costumers she said to me “This baby is going to be special and change your lives forever”  I didn’t know I was pregnant we had only agreed to have another child a month before but by the end of day I had done a test and it was positive.

If I really think about it this is when I stepped on the rollercoaster for the first time as my pregnancy was not the kind of pregnancy you would want. Fast forward and Archie was born at 37+ weeks normal delivery.  We had some feeding difficulties and he was born with a club foot at 6 weeks old there was concern due to his head circumference it had grown at an alarming rate.

Doctors after scans could not tell me why my son’s head was growing at an alarming rate and why he was presenting in this way, development was becoming apparent that it would be delayed and again he was tested for many things all showing normal or negative.  I use to drive my self crazy sat on Google wondering and reading all about different conditions that my son may or could have, going back and forth asking doctors questions but even the medical profession couldn’t  give me answers and this journey on the rollercoaster became a very lonely ride.  Archie has profound and multiple learning difficulties, cortical visual impairment, Epilepsy, Archoniod cyst on the frontal lobe of his brain, mobility issues, gross & fine motor skills are impaired, sensory processing difficulties,  but each part of the jigsaw puzzle didn’t add up and this was frustrating it was like tying to do a jigsaw puzzle but too many pieces were missing there for you couldn’t see the picture. The rollercoaster became a very scary & frightening place to ride on your own and I just wanted to jump of but I couldn’t this was my new life a life I had never asked for, a life that for some reason we were given.  Many times I wanted to give up & give him back but I just couldn’t I had to face head on what was coming our way.  Archie was a little boy who needed so much help and I couldn’t give him that help on my own, he needed support from the physiotherapist, occupational therapist, speech & language therapist, health care system, education system, visual impairment specialist, neurologist,  paediatricians, dietitians the list was endless and this became so over whelming, while Archie was having all this support I felt I had non and we were the only ones going through this I only knew a few other people with disabled children and there children had a name for their disabilities.

Then 3 years ago I came across swanuk and all of a sudden I was not alone any more they’re was more of us with children that were undiagnosed my rollercoaster ride was no longer scary, frightening or lonely it became a ride I enjoyed was fun exciting and full of families sharing their experiences together. My rollercoaster journey will continue but at least I know we will share the highs, lows, dips, the big hoops together and it will never go back to feeling lonely again because I have my swan family to help me. please help this to continue by watching our video of lots of children having fun and if you can spare some time  donate the price of a cup of coffee this will also help other families become less isolated and alone.

Dear Social Services

Originally posted on swanfreddie:

Dear Social Services

Do you know how hard I found it to pick up the phone and ring your team asking for help with my disabled son? Do you know how guilty I felt calling you to arrange a ‘child in need assessment’ on my child because i’m not coping with him anymore? Do you know how desperate I am for you to help my family? It wasn’t a decision I took lightly. Let me explain why things are so hard so maybe you’ll understand that me and my husband aren’t just bad parents but in desperate need of help with our difficult situation.
You see, our son Freddie is severely disabled. He relies on me and my husband 24/7 for his care needs. We have become his legs as he cannot walk, his voice as he cannot speak and his hands as he cannot use them properly, We are his…

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Brian Lamb’s Top 10 Tips for Engaging Parents

Originally posted on Special Needs Jungle:

Debs writes….

brianAs you know, I’m co-chair Kent PEPs (Kent’s Parent Carer Forum).

Last month, we held our first Conference for Parents and Practitioners to promote the value of co-production as this is such a key theme of the Children and Families Bill. We were hugely fortunate and managed to secure Brian Lamb (author of the Lamb Inquiry) as our guest speaker for the day. If any of you have had chance to meet Brian, you will know how inspirational and passionate he is about the value of parental engagement. One parent came up to me after listening to him and said “wow, he really does get it, doesn’t it?” followed by “Let’s hope everyone took notes in there”.

Being the cheeky northerner that I am, I asked Brian if he would produce his Top 10 Tips for Parental Engagement (if you don’t ask, you don’t get)…

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