The Velvet Bulldozer wins again

I’m sat with a celebratory cup of tea and a Twirl (it’s a little early for Gin), rejoicing in Velvet Bulldozing my way into getting the provision I wanted for Freddie’s speech and language sessions at school.

LAST TIME

Last time I met with his SALT, I was informed that she thought as he was ‘doing ok’ he didn’t require the provision we had agreed on before school started last year. To say I was disappointed is an understatement. The thought of having to go in again and fight again for it was really frustrating. However, his SALT at the time was retiring so I decided we could all start a fresh. Every cloud and all that. I contacted the Head of Speech and Language for SN schools, we had met before, and expressed my desire for a meeting with the new team. I shared how I felt about the current situation and what I wanted to see happen. My well formed outcomes.

THE MEETING

The new SALT staff are very nice, a little overwhelmed with their caseload but with a caring and positive attitude. Things I knew I had in my favour were that I had an existing relationship with the Head of SALT and I like her very much. She is professional and organised, she listens and always confirms the agreed actions. She also isn’t put off my my direct nature. Phew. I went in prepared with notes and because I had set out what I wanted ahead of time, they weren’t going be surprised or unable to make a decision, positive or negative,  at the time of the meeting.

HIGH HOPES

I do have high hopes for this fresh start with a new team. I might have gone one step too far at the end and frightened the Senior SLT when I made clear (velvety clear) that I really just wanted his school team to be working together with his teachers and me and championing him every step of the way. Ensuring he reaches his potential. Anyone who isn’t on board to be his champion, probably isn’t going to work. Although a little twitchy they were all in agreement and know where I stand. Overall it was a good, positive meeting, run on friendly but professional terms. Most importantly I have hopefully got a good base for a strong working relationship and I got what I wanted for my boy. The next task is going to be an update for his new ECHP.

I know it can be emotionally and physically draining but you can all do it. Sometimes the system isn’t set up well enough to support us or our children but we all have it within us to get as much as we can. Some of you are true Superhero’s and get more than is ever thought possible.

Looking forward to our next How to be a Velvet Bulldozer workshop being hosted by Entrust Care Partnership on Thursday 23rd March in Leamington Spa.

 

(Credit to Sandy Row’s book, Surviving the Special Educational Needs System, How to be a Velvet Bulldozer for the workshop name inspiration)

The only solution is Gin

The only solution is Gin. I’m going to have to break into a new bottle right this second.

50% of the time, getting all three to bed on my own is fine. Yes they all go bonkers and have a mad hour but it’s usually ok. Last night was one of those such nights. Tonight was the other 50%. The nightmare 50%. One wanted a bath and the other two wanted a shower. Thats fine because now that we have a new shower, it’s so much easier for me to wash Freddie this way, so this would be my preferred option anyway. The tiny one is in the bath, I’m cleaning Freddie’s teeth. I hear “Uh Oh” and the bath is now completely empty with one naked toddler sitting in it shouting ‘more more’. He isn’t happy when he has to get out. Ok, I think, no problem. The other two wanted a shower anyway. Whilst getting the tiny one dressed, in comes my girly, screaming as if she has lost a limb. Almost but not quite. Playing with Freddie (how many times have I said ‘DONT play with the doors) she is running away and Freddie goes to slam the door and traps her toe underneath it. To be fair, I would probably – ok definitely – have been screaming too if that was me. Skin peeling off, blood and tears everywhere.

Once she had calmed down, a normal breath rate had resumed and I had convinced her we didn’t need to dial 999, we talked about it. She was convinced Freddie had tried to rip her toe off on purpose. Mean time, the tiny one comes running out of Bella and Freddie’s room wearing a pair of Bella’s knickers over his nappy and vest. I wish I’d had a camera. Very difficult to have a serious conversation with one upset child whilst wanting to laugh at another. Multi tasking is the only way.

Trying to help a four year old understand why her older brother doesn’t always understand the implications of his actions is tricky. I’m really trying not to weigh her down with too much information about his learning disability but it is becoming more and more apparent these conversations need to happen. We really want her to just see him as her brother Freddie, not her brother Freddie who has special needs. However, helping her to understand why he needs more help than her in certain ways is hopefully a positive step forward. Little by little. At the end, she said to me ‘I guess it’s ok, his brain doesn’t work in the same way as mine does it?’ Broke my heart a little for a number of reasons but as least I knew she sort of got it. I told her that like all of us, me included, he was still learning and sometimes he finds it hard to understand and process things. I think she still thought maybe he did it on purpose mind you. She won’t know what has hit her when Jago really starts pushing the boundaries with her.

My poor neighbours. During the hour of 6pm-7pm they would have heard blood curdling screams, me shouting like a fish wife and general pandemonium.

I hope everyone’s bedtime hour went more smoothly than ours. Cheers. Bring on the double.

Singing Happy Birthday

Singing Happy Birthday.
It’s the traditional thing to have sung to you on your birthday but this year it was extra special for me. My daughter sang it beautifully but to add to that, with some help and encouragement from his Daddy, Freddie sang it to me also. It took him quite a while but he did it and I loved it. Crying with happiness. What a brilliant birthday gift.

I had a really great night away to celebrate my birthday with friends and this was the view from our hotel. The amazing Tower Bridge.

Reclaiming Time and Space

Time is so precious.

Time with our children, time to see friends and family, time to work, time to fit in the appointments and therapies for my child, time to clean and wash clothes, time to go out and enjoy myself, time to sleep. Fitting everything in is a real skill and one that can be somewhat overwhelming at times. I have lists coming out of my ears and each day I’m barely scratching the surface. I prioritise the most important things, especially if they can be done quickly. I do however have a growing To Do list of things I would really like to do or get done for me. These things are generally getting further and further down the list no matter how organised I am.

As the New Year came and went I felt as if i was drowning under the weight of the contents of our house. Plastic multicoloured toys, clothes and general stuff. Half of which we don’t need or use. With not enough hours in the day and my increasing level of tiredness, I decided to take action. Under normal circumstances, I would have spent an hour or so in a vague attempt to de-clutter the house. I would have become distracted and thought about each item way too much and probably not got very far.  Knowing myself fairly well and knowing this wasn’t going to cut it, I decided to bring in the expert. I needed focus and a gentle kick up the bottom to get me moving and make a real impact.

Yesterday morning at 9am sharp, Ruth arrived at my house. Ruth is The Time Fairy. Anything you need help with to give you time, she is your lady, your own personal PA. De-cluttering, help with To Do lists, weekly or one off assistance. You need it, she can do it.

At first, I questioned my own need for The Time Fairy, surely I can just get these tasks done by myself? I could do but it might not happen for another 5 years and the job wouldn’t be complete. I needed help and focus. Click here to read Ruths Blog on why we should de-clutter. For three full hours we de-cluttered my bedroom. How bad can it be you ask? Well, it was 7 bin bags to charity, 2 bin bags of recycling and one bin bag in the actual bin. All just my stuff, clothes I haven’t worn for 10 years, shoes I have no need or desire for. I couldn’t believe it. My room is now feeling very Fung Shui. We had a little time at the end so between us, we sorted out the clothes of my two youngest children. Another bag to charity and one to recycling. I think I needed Ruth in my life a long time ago.

Before                  After            Charity/recycle  

I’m very used to thinking of my children first when it comes to spending money but sometimes you just have to put yourself first. For me, clearing my house helps to give me a clear head and reduce one the stress elements in my life. I’ll be booking Ruth again this year I’m sure. If I could I would have her every week but the reality is, a bit of support once and a while is more doable for me. Getting time for yourself can come in many different guises so find out what would help you the most and take action to make it happen. We all need looking after as much as our children do.

 

 

Rare Disease Day 2017

Rare Disease Day 2017 is today.

The main objective of today is raise awareness and raise funds to support those living with a rare disease. A rare disease is one that affects less than 5 people in 10,000 of the general population. So, I guess we can say that at the moment, Freddie is pretty rare. As more results come in via the DDD study and the 100,000 Genome project, he will most likely become less rare. At least, I hope so. It can be very isolating not knowing anyone else in your situation, although that is the brilliance of SWAN UK. SWAN UK brings together families who’s children have no diagnosis to explain their difficulties. For 4 years, this was our situation. However, as Freddie’s condition remains on the rare side, we are still supported by SWAN UK. This initiative changed my life.

Roughly 1 in 17 people will be affected by a rare disease at some point in their life, thats 3.5 million people in the UK alone.

The thing with being rare is that there isn’t much known about your condition and as such there is no prognosis for many. For us, the negative of this is that we have no idea if Freddie’s condition could be life limiting or at some point become regressive. The positive side of this is that we can believe anything is possible and potential can be high. I always try to focus on the latter. The first option comes with too much fear.

I volunteer for SWAN UK as a Parent Representative to help raise awareness of undiagnosed and rare conditions. Freddie only received a diagnosis aged 4, however I know many children who remain undiagnosed well into their teens and beyond. 6,000 children are born each year with an undiagnosed condition likely to be genetic (either hereditary or De Novo) and 50% are likely to remain undiagnosed. Like SWAN UK, RARE DISEASE UK is an initiative of Genetic Alliance UK and a national campaign supporting those with rare diseases and all who support them.

Please do read a bit more on rare diseases and share the information, especially if you know someone who could benefit from the support.

Speech therapy, The sky’s the limit

What an exhausting day. What a successful day.

Today was our 3rd session of home speech therapy for Freddie. We do this every 12 weeks and then I carry out the program at home on a daily basis. It’s exhausting, a full day of work for us all, but now I finally feel we have found a fantastic and engaging speech therapist. Someone Freddie really warms to and who gives Freddie 100%.

We have tried a whole variety of speech and language therapy approaches, all with a small level of success but none that has made such a marked difference. This will of course partly be due to Freddie’s brain maturation and his personal growth. He is now ready for it but I believe finding the right match between Freddie and the therapist is key. Thank you Carys for being AMAZING.

 

We do have an almost adequate amount of support from the NHS and we are grateful for the provision and support we have but it isn’t any where near enough. Freddie has a severe speech disorder, Verbal Dyspraxia, Dysphagia, Dysarthria, low muscle tone and delayed motor planning so he needs more than the average to succeed and improve. His therapists at school also focus more on his language than his speech. He needs a lot of focus on his speech.

The frustrating thing is that in order to get the right type of therapy for Freddie we have had to go quite far afield. To be honest, at one point I was seriously considering a residential trip to America but luckily, after much searching, I finally found someone with all the necessary skills. We use Skybound Therapies who are based in Pembrokeshire. You can either visit their office or they will conduct a home visit. They also have residential stays and can offer help in many other areas. It’s not cheap but it is an awful lot cheaper than going to America.

Freddie’s therapist has all the experience we need, level 3 Talk Tools, Nuffield Dyspraxia Programme, PROMPT Bridging Technique to Intervention Level 2 (making her one of only around four therapists trained to this level in the UK) and the Kaufman Speech to Language Protocol. She is also trained in many many other areas but these are the key skills we work with to help Freddie with his speech. And it is working.

He has improved so much in the last 12 weeks. His speech is progressing. As a result, his language is also improving. There is still a very long way to go though. I always try to focus on the positives and the achievements but I am also realistic. Once I understood where he was ability wise and how much it takes just to move on even a small step, I realised that helping Freddie reach his potential is going to involve many many years of hard work and determination on a daily basis from both of us. There is no real end in sight but he is achieving each and every day which makes it all worth it.

What a Superstar

“Sometimes it’s the very people who no one imagines anything of who do the things no one can imagine” The Imitation Game.

Reading

One of the books I found incredibly useful when learning about Developmental Verbal Dyspraxia/Apraxia was Late Talker What To Do If Your Child Isn’t Talking Yet. It is very informative and easy to read

And so it begins again, Fighting for Freddies Therapy

And so it begins again. Last summer I requested a meeting with the Head of Speech and Language for Special Education along with Freddie’s therapist at school to discuss the provision he is entitled to.

I wanted more.

Developmental Verbal Dyspraxia

Freddie has a severe speech and language delay and Developmental Verbal Dyspraxia/Apraxia. Added to this, he has a learning disability. This means he needs a lot of intervention. Just to put this into context. If you live in America and have Developmental Verbal Dyspraxia/Apraxia you can receive three 45 minute sessions of therapy each week or three to five 30 minute sessions. Before my meeting last summer, Freddie was receiving one 15-20 minute session each week during term time. This only totals approx 12 hours and 20 minutes therapy a year. Due to his therapists school meetings and other commitments, he didn’t receive around a third of his provision. So really he only received around 8 hours therapy all year. 8 HOURS!

That is well over 100 hours less therapy each year than in America. I realise their health system is different. I wasn’t expecting to get the equivalent without paying for it but I did want two 30 minute sessions each week during term time. Regular intervention is key.

“To summarize, although there are differences in definitions of intensive remediation for children with CAS, there appears to be emerging consensus within the literature that therapy should be conducted at least three to five times weekly, in sessions lasting between 30 and 60 minutes each, and that the intervention should be conducted on an individual basis.” Penelope K. Hall, Linda S. Jordan, Donald A. Robin, Developmental Apraxia of Speech: Theory and Clinical Practice, 2nd Edition, page 200, Pro-ed Publishers, Texas, 2007.

I got into Velvet Bulldozer mode, I planned my well formed outcomes for the meeting and was in a very resourceful state. To my delight, I got what I wanted. The meeting went smoothly and successfully. They agreed, double the provision and then some. It was implemented in September 2016 with a plan to review in January this year, followed by a meeting to discuss his progress or lack of. This meeting was yesterday with his wonderful teacher and his SALT.

I’m so disappointed. Even though he has been making superb progress, something which has been noted by everyone who works with him, his Speech Therapist informed me she didn’t think he needed to continue with the additional therapy and intervention. “He is doing ok.”

She seemed to think that he would be fine with just one session a week and probably not even a half an hour one, alongside his daily input from class and from me at home running the private therapy we buy in.

What if he didn’t have the additional from us? What if we couldn’t manage it or didn’t have capacity to carry it out, would it be different then?

All of our children who need Speech therapy or therapy of any kind are being done a huge disservice by being refused the relevant intervention. I know budgets are tight but they are also often wasted.

There are a number of concerns I have from yesterdays meeting, i won’t go in to them all but the main result is that I now have to go back to the start and fight once again for his Speech Therapy provision. Why would you take it away from a child who is doing so well?

So, The Velvet Bulldozer strikes again and I planned out an email to the Head of Speech and Language, his current SALT and cc’d his teacher (who is in agreement with me) to request another meeting after half term with the new members of staff. I have made clear how disappointed we are and that, especially as this provision is detailed in his ECHP, I want it reinstated. One of the positives here is that his current SALT is retiring so hopefully we might be able to start a fresh.

I told her again yesterday, something which I have said before numerous times. We fully believe in Freddie. That he can reach is fun potential with enough of the right support and intervention. We as his parents do as much as we are able both physically and financially but we need professional support to back this up. I don’t want Freddie to be in a situation where he isn’t progressing as he should be because someone has decided to remove his provision. I don’t want to look back on this stage in our lives and doubt that we gave him everything that was possible.

The Life Olympics

Our children are training for the Life Olympics each and every day of their lives and deserve all the support and intervention possible to help them win those Gold Medals.

You wouldn’t find Usain Bolt (image courtesy of biography.com) winning any Gold Medals on just 12 hours training a year would you! This is the analogy I used yesterday. Not much come back from that, funnily enough.

So, I will be planning my well formed outcomes and getting into a resourceful state ahead of the next meeting to get some positive results. I want what I want for my boy and this Velvet Bulldozer is going to get it. Wish me luck.

Looking forward to our Velvet Bulldozer workshop next week on February 16th. x

 

The dangers of sick bugs galore

I’ve been somewhat quiet on the writing front over the past week or so. I’m currently working out which antibacterial brand I should be taking out shares in. The Vital Baby Acquaint Sanitising Water is a pretty good one. I think I’ve also used about 100 of these Flash wipes. I have been pretty much house bound since last Thursday and it looks like I have at least another two to three days to go. One by one my three children have been dropping like flies with a really nasty sickness bug. Freddie was the last to get it. I got a call from his special needs school yesterday to say he had been sick so I got in the car and rushed over to get him. His poor yet amazing TA said they were all in the dinner hall at lunch and he started to look unwell. We think he is having Absence Seizures so she thought that was what she was looking for. Unfortunately, sometimes the signs he is going to be sick look a bit similar to the absence. The next moment, the whole table and all the food on it was no longer looking very appetising. Argh, it’s just too horrid but they still had a sense of humour about it. (So sorry to anyone reading this whose little ones go to the same school. Eek.) I now know I am also quite adept at driving carefully and catching sick in a paper receptacle on the move. It really really makes me heave.

Bella is back to her usual self but Jago is really poorly so he has gone to stay with my Mum-in-Law to be looked after. This is something I’m feeling really guilty about, although I know he is in very safe hands. I’m so lucky to have this support because although it’s not nice for any child to be sick and feel so poorly, it can be really dangerous for Freddie so it means on this occasion I can give him my all. He has an unsafe swallow and doesn’t chew his food well at all so we have to be really careful what he eats. He also doesn’t very often wake if he is sick in the night and he doesn’t really move in bed. This means I have, in the past, come in to find him laying on his back with sick everywhere and lots of pieces of undigested food all over the place and still in his mouth. Such a choking hazard. So, last night he stayed downstairs with us until we couldn’t stay awake anymore and I stayed up with him all night to keep him safe and comfortable. We are now just trying to keep water down. We have gone from trying to pipet 1ml of water into his mouth when he was an infant because he wouldn’t/couldn’t drink it, to now withholding water to only small sips when he actually wants to drink gallons.

Also, I now officially have old lady hands from all the cleaning, washing and use of antibacterial. For anyone else who has this problem of incredibly sore hands, my top tip is to either buy some Burts Bees Hand Repair Cream or my other favourite, L’Occitane Shea Butter Hand Cream. I swear by them. To top it off, we are having some work done to the house so no water or use of a washing machine. Thank you AM for walking my dog and taking home a basket of laundry, don’t know what I would do without you and thank you LN for being such a fab friend.

After spending the last 24 hours with increasingly rapid breathing and heart rate, frothing in the mouth, constant throwing up and choking, Freddie is finally sleeping on the sofa. It’s given me the chance for a hot cup of tea and few minutes to update my blog. Plus a little rest from all the jolly kids TV I have been subjected to for the past week.

I hope you are all staying clear of this horrid sickness bug.

Podcast

Last week was a first for me. My friend and Mentor, Clay Lowe, invited me to take part in a Podcast with him. We talked about Aimee Mann Mentoring, the first in a series of events that I am facilitating, hosted by Entrust Care Partnership and what it means to be Undiagnosed and the support I have received from SWAN UK. It was a great experience and I hope to do another one again in the future. If you have a few minutes to listen, maybe whilst doing your ironing or you can log on to Radio Warwickshire and listen to it in the Car, please do have a listen to learn a little more.

When 20 pairs of eyes are all on you…

This morning was a mad dash, more so than usual. I had been invited, in my other capacity as Volunteer Parent Representative for SWAN UK to meet with 20 Paediatricians, consultant and trainee level, at our local hospital. It was infact the hospital where all three of our children were born and where we spent our time in SCBU with Freddie.

I was there to tell them about Freddie’s story and the importance of having a sense of belonging to a community who understand you, having access to good quality information and knowing that the professionals who are supporting you have somewhere to signpost you rather than telling you to go home and to wait and see what happens. This elusive support network and raft of good quality information is often very hard to come by when your child has no diagnosis to explain their problems. SWAN UK, however, was my saviour.

I always hated public speaking and I used to be a lovely shade of beetroot even when presenting in the corporate world but as time has gone on I have learnt to love it. My worst moment ever was appearing live on one of the shopping channels, I was terrible. Ah how I laugh when I think back now. I could have taken part in The Mannequin Challenge and most likely won it.

When I first started public speaking for SWAN UK, I realised very quickly that I knew my topic inside out and that gave me the confidence to speak.

When I first arrived today and looked through the window I thought I must have looked like one of those cartoon characters who’s heart is pounding out of their chest.

That feeling really only lasted about five minutes though. Once I started to tell them all about Freddie and our experience it all just started to flow. The reaction was such a positive one and I loved it.

SWAN UK made such a impact on me in my state of limbo and distress that I took on the parent rep role and this is one of the things, along with my other supporters such as Entrust Care Partnership, my coach, my lovely friends and family and of course Ollie which have given me the confidence to set up Aimee Mann Mentoring to really support and guide parents of children with special needs and disabilities with or without a diagnosis.