Month: March 2018

Taking Little Bits Of Imperfect Action.

This past week has taken a more positive path for all of us in the Mann Household. Sometimes you need to get to breaking point with overwhelm and let it all out to enable you to start again.

I have finally got myself started with running, using the trainers I bought recently. Having been hit by a car, as a pedestrian, when I was 17, I’m always really nervous of causing more injury to my already dodgy back. Hence why I’ve always rejected the idea of running.  However, with the encouragement and slight ‘peer pressure’ from friends (you know who you are), I have started slowly with a Couch to 5k. I’ve completed my second go and I’m feeling pretty good about it. My bum muscles really knew about it this week mind you. Ouch. Biggest muscle, most pain. No cardio exercise for about 15 years would explain why I was in so much pain after running for only eight minutes in total. It can only get better from here, right? Teddington couldn’t work out what I was doing? It’s like the children’s faces when I get the ironing board out. “What’s that Mummy?”

I need more energy to continue with the pressures I have and more strength to continue to physically support Freddie. Plus, I want to know I’m doing something practical to do my best to live as long as I can for Freddie and my other two. He is going to need me for a very long time.

I’ve taken action, albeit little bits of random action, to make some changes in lots of areas this week. Including getting some support for us with Freddie in managing some of his challenges. Talking it through with friends and having a couple of coaching sessions myself to work through some if the areas of overwhelm. I’ve got a better plan in place for the interim now.

Here is to getting through the next two weeks Easter Holiday unscathed.

 

 

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Being Rare Is Never Black & White

Yesterday we took a day trip to Birmingham Children’s Hospital for our first appointment in Cardiology. Freddie’s Neurologist isn’t convinced that his suspected ‘absence seizures’ are neurological. As usual, nothing is straight forward for my little man. He has never presented anything in black and white and things always seem to need lengthy investigation. Although the physical symptoms look like absence seizures, the Neurologist isn’t convinced due to the frequency not being high enough in his book. This means we are now going down the Cardiology path. We need to rule out his heart being responsible.

I’m no doctor, but my gut instinct is that is it not his heart and that it is neurological. We would rather know for sure though than make an ‘educated’ guess and be wrong. His heart is physically in good condition which is excellent as he did have a hole in the heart before he was born, so that’s a positive. He did really well with the tests considering he has a few sensory aversions. Historically, if you had shown him a plate of jelly or a ball of play dough it was game over. Crying and shaking would ensue but having worked on this over the years he is in a better place. He tolerated the stickers and wires for the resting ECG which came out fine and he did really well with the jelly on the Echocardiogram (ultrasound) test. The next step is another non-invasive test where Freddie wears an ECG arrhythmia detection device which can be discreetly used to screen for infrequent and/or asymptomatic arrhythmias including those that occur during sleep for up to 32 days. “GOOD LUCK WITH THAT” was my response. Freddie is going to be pressing the buttons night and day. We do have to try though so that we can capture what the heart is doing when he has an absence so we will give it a go. If it doesn’t work, we will go to the next level.

Freddie was very excited to see his heart on the screen and insisted on taking a photo of it.

Ollie couldn’t come yesterday due to work commitments and as I hate driving in Birmingham, my Mum came with me for support and her husband drove us in which took the pressure off a bit. The only thing to do after a visit to BCH is to get a treat from the Boston Tea Party.  We always take Freddie here if we have time. He chose a huge slab of chocolate brownie and I only managed to steal a tiny square. Made him happy though. I would like to pretend I was virtuous and just had a mineral water but it would be a lie. A huge Latte and a big piece of carrot cake went down nicely thank you very much.

This is the start of a whole new language and set of terminology that I need to learn and many more appointments to come. Will just try to ensure cake is the pay off after each visit.

 

 

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When Your 5 Year Old Child’s Teacher Tell You Off!

What a week!
I attended a group meet at Freddie’s SN school to talk about the upcoming Aimee Mann Mentoring workshops and met some fabulous parents. Bella and I got ‘told off’ by her teacher for her wearing lipstick at school. I was practically crying with laughter, made no easier by two of my friends cracking up in front of me, whilst trying to hide it. Bella is only five and already such a sassy monkey. Totally tried to defend herself and say it was lip balm 🤦🏼‍♀️. Love her. She is just a mini me. I’m fairly sure I wasn’t like that at five years old though. Parents eve for her also this week. lunch out with a friend, and a trip out with Jago and friends today. In the middle of this, it was a pretty emotional week. Majority of the time I can bounce back pretty easily through well practiced resilience techniques but this week it was just damn hard. It’s the ebb and flow. Nothing majorly new. Often when we have a big therapy session for Freddie, it’s so great to see how far he has come but it also highlights just how far we still have to go. It’s a lot for us to deal with sometimes when it brings up so many other thoughts, feelings and emotions. I’m sure so many of you can relate to this.
Anyway, to cheer myself up, I spent an hour with a friend (she has the patience of a saint) in a sport shop. Yes you read that right and I am now the, sort of proud but nervous, owner of a pair of running trainers. Literally anyone who knows me personally will be in total disbelief. I’m still to get them out of the box but intentions are good.
All the gear and no idea.

Is 4.30pm On A Tuesday Too Early for Gin?

Today has been a looooooong one. The wonderful Carys came from Skybound Therapies today.

A full day of speech therapy for Freddie. For me and Ollie too really. Concentrating all day and encouraging Freddie to focus for more than two minutes takes a lot out of you.

She has seen such progress since her last visit. We had to extend the time between visits this time though due to Freddie’s suspected absence seizures, which increase with tiredness. We have to be really careful not to over cook him.

He is very close to achieving all speech sounds now.  The tricky back sounds still need a lot of work /k/ and /g/ but we tried a different Talk Tools method today which made such a difference to his production. Now we have to focus on /th/ /r/ /z/ /sw/ and /tw/. We have such a lot to get through still with more 2 syllable nouns and verbs, multysylabic words  like elephant and violin and 2-3 word noun-verb phrases. We have totally finished box one of the Kaufman Speech Cards and are steadily working our way through the whole of box two with the added support of PROMPT where needed. Phew. We are now adding in sections of the Nuffield Dyspraxia Programme which will run alongside some of the work school are doing with him. 

Speech therapy is a long road for Freddie. With each visit, I see how much more he has to achieve and how much more work I have to do. At times, it’s pretty overwhelming. Worth it though. He has learnt so much in the last 18 months with the support of Carys and I am so grateful we found her. Eventually. 

Anyway. Today has been totally draining so at 4.30pm, Ollie and I cracked open the Gin. Just the one but it was lovely. I’ll be off for an early night. xx