2 Year old boy with left hemiplegia how do you chart progress

Gar

Hi,
I'm a Dad of two great and loving boys, a 5 and a 2 yr old. Our younger son was diagnosed with mild CP, left sided hemi in April this year. I have read up as much as I can take in stages as it's a lot to take in. We're doing swimming and soft play to promote his weaker side, have taken him to a paediatric physio and will continue to go to regular apt.
I've noticed his speech is delayed by about 6 months. We noticed too, with schools being off last week and our boy not being in nursery for his usual 2 1/2 days per week shift that he is less anxious and more settled. He has difficulty with visual awareness on his left side and the associated wobbly balance. I can appreciate that a 'one day at a time' approach is the route to take, difficult though it may seem for me. Also each child's circumstances are unique so maybe my I'm asking too much when I ask the following, but has anyone made up a set of time based goals to chart progress of their little ones to help keep us parents in check and motivated? I'm open to discussion/suggestions/help on this.
Thanks,
Gar.

mollymoobarnes

Hi Gar

You can of course set goals - things that you want to work towards, along with plans as to how you can help your little man achieve those goals, but write your timescales in pencil so you can regularly amend them! And never feel flat when a timescale is re-set. It can take FOREVER for something relatively small to happen and then when you least expect it a great leap comes along, espcially in language aquisition. Our son Tom is 2 and has quad cp so he is equally as affected in his arms and legs and physically really has some large hurdles ahead. We hoped that he would be active sitting independantly by 2 but that hasn't happened as yet, but at his 2 year check the other day his language and understand was graded as that of a 2-3 year old, wheras his physical skills were graded at 8-12 months (I had a good cry about that but it's nothing we didnt already know).

We have an older child, Molly, who is 4 and Tom has an able-bodied twin sister Iris. We could torture ourselves by comparing Tom's development to that of his older sister Molly when she was his age or the far more direct comparison with his twin. It's a hard thing to have in your face but we have learnt to not make comparisons and to take all of Tom's progress as a reason for great joy and celebration. Sometimes Iris will watch Tom being applauded for stepping with his ladderback chair and then Iris will zoom over to show us something new she can do at a far more advanced level of physical skill, eager for her bit of applause too. We give them the same attention and applause, just for very different achievements!

It's hard I know but there are no hard and fast rules as to when things should happen and even at a similar level of affliction a child wile develop different skills and different rates to that of another. Just keep plugging away and enjoy the results when they come.

Maria xx

renacahill

Hello Gar. My grandson has quad CP. You are doing really well with the activities and I am sure your son will do really well in the future.

Regarding goals. I would be careful about setting tme orientated goals as it can be soul destroying if they are not reached. Certainly you can work towards general goals such as walking jumping running etc, but you will find from research that there are tiny infinitesimal steps on the way to the major goals. It is like an orchestra. Individual instruments start playing and more and more are added until you have the full orchestral sound! Thats the goal you wanted to reach! Its knowing what these small steps are. Your physio etc will work you towards your goal.

It helped us to have a scrapbook and chart these smaller steps, such as sitting cross legged without falling over! Then trying to transition into all fours. That way your goals are fluid but you are constantly laying down the foundations to reach these goals. I believe Scope have a step by step chart?

Hemihelp is a site specifically for hemiplegia and they are very helpful and sell a DVD with hemi specific exercises. Because he has a hemi it may be that your son does not really know the weaker side of his body is there. Stretches, massage and reminders are a good way to get him to see this side. Reaching across his body both sides is also very important to make him aware of the weaker side so he will begin to use it more. None of this is easy but an excellent book available on amazon is 'teaching motor skills to children with cerebral palsy and similar movement disorders' by siegelinde martin is brilliant and full of pictures to follow!

good luck, kate

Gar

Thanks Maria,

I guess what I am aiming for is to be realistic in the short term but optimistic in the long term. Setting goals is more of an aid to keep me focused and positive about this. I must admit to struggling to cope with my feelings about my boy. He's wonderful in every way, but I see myself as the weak link, by being seemingly unable to get a grip on this situation. I'm going to keep plugging away as you say, who knows maybe by the time the 2024 Paralympics come round they'll be a little boy, my son, showing me how it's done!
Gar,

mollymoobarnes

Hi Gar

You are absolutely right - it's a delicate blend of realism and optimism. Never underestimate but never set unrealistic goals either. Kate is right - it's just like an orchestra - everyone learns their instruments and then the diferent sections have to learn to play together - but when they come together it takes your breath away! Those firsts - the first roll, the first word, the first 'I love you Mummy', the first 10 second sit without support - just priceless...

I can completely relate to your feelings Gar - our kids are so brave, patient and strong and as parents we feel so desperate to fix it, make it better, make it go away but we aren't able to do that so we worry, plan, stress - are we doing enough, are we doing the right things, should we be doing that thing that another family are doing with their child, should we spend loads on that treatment or this one? It's our job to protect our kids and make everything right and this is the one thing we can't do for them so all we can do is nurture, support, encourage, celebrate the small steps and hope... You are doing a great job - you are a loving dad doing all that you can.

I just read 'Blue Sky July' - a book written by a mum of a boy with CP. Just breathtaking - brilliant and terrible. It really resonated with me - it's not an easy read but I found it very uplifting a full of hope. Might be worth a go? Have some tissues nearby though.

Maria xxxx