Update on my boy — Scope | Disability forum
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Update on my boy

msujb Member Posts: 9
Harry is now 21 months old. He can now do so so much its amazing seeing him every day when I come home from work and find he's doing something else he couldn't do the day before. His new trick is he can now move from sitting to crawling position and hold himself up on all fours before trying to crawl and falling on his tummy bless him. He's been able to stand from sitting now for a few weeks and begin to walk off. Unfortunately his defence mechanism is still not developed so if you left him he would fall on his face but I hope that it will come in time. Harry is the most amazing little person who is always laughing and talking......more words everyday and is now starting to string two or three words together. His fav is "In the car!!!!!". My wife and I are so pleased with his progression which is all down to my wife's amazing approach to his disability and Harrys determination to do everything. Everyone we see are amazed everytime they see him. Here's hoping the improvements continue.


  • mollymoobarnes
    mollymoobarnes Member Posts: 107

    I just wanted to say a big WELL DONE to Harry! What an amzing little boy he is! And well done to you and your wife for giving him the love and support he needs to do all these clever new things.

    My son Tom is 18 months old and has quad spastic cp. He too is doing all sorts of new things - he's just learnt to roll (all around the room and under the sofa) and his sitting balance is getting better, slowly. He's stepping with his hands held, standing at the sofa with help and using lots of new words. It makes me SO so happy to see him developing into such a wonderful bright little boy, as I'm sure Harry's new talents make you feel on top of the world too.

    Hooray to our boys for being blinking marvelous!

    Big hugs to Harry - keep up the great work!

    Maria xxx
  • mollymoobarnes
    mollymoobarnes Member Posts: 107

    PLEASE don't worry!! Tom has really only just started to overcome his stiffness in the last few months - really since we started Conductive Education. We thought, just like you, that Tom would never be able to get any meaningful movement but, with time and practice, it had started to come together. Don't get me wrong, Tom is still a very tight, stiff little boy - that is something that will never change but he has learnt to put his fists down on the floor or on his knees to prop himself while sitting and this has given him some sitting balance and he has learnt to tighten his arms and fists and to move his head in the direction he wants to go which is enough to pull himself over into a roll on the floor. Once he did a singlew roll a few times he then started to roll all over the place and now he's able to get all round the room!

    I would say that there are some things that have helped Tom. They are:

    Start the day with a massage of arms and legs using a few drops of Clary Sage oil mixed into a bottle of normal baby lotion. Give the muscles a good deep rub and ten give everything a good bend and stretch - toes, ankles, knees, hips, fingers, elbows and shoulders. Make it fun and he shouldn't mind too much. Put the sage oil (just a few drops - it's strong) in his bath. Its great for relaxing tight muscles - and he'll smell fab too!

    Get into Conductive Education classes somewhere - contact Scope and they should be able to point you in the right direction. Essentially it's just physio built into things you do every day but it's fun and Tom has really started to do some things that we know he couldn't do before.

    Keep driving him forward - don't stop trying to get him to reach out. Give him lots of tummy play time - get a rolled up towel under his chest to take the pressure off those arms but lay in front of him and play - get him to lift his head, prop on his arms. Get a mirror in front of him so he can see himself. Get one of those toys with little LED lights that spin and flash (like the kind the blokes sell out the back of a van on bonfire night) and give it to play with under a shiny plastic space blanket. Stimulate him to keep interested and keep his head up and push on his arms. Just keep trying - 30 seconds one day might turn into a minute a few days later and the stronger the arms and the core muscles get the more he's be able to use them to eventually roll.

    Try laying him down on the floor with a set of maracas or hand-bells - one in each of his hands. Try to get him to knock them together in front of his chest and then try to get him to open his arms as wide as he can and knock them on the floor. Sing a marching song (Grand Old Duke or something) so he can bang them to the tune. It's not something that happens overnight but gradually his arms with loosen up, especially when he knows what the game is and he's not anxious.

    Keep talking to him - tell him everything and show him everything. Look at books together and talk. Keep repeating key words - he will repeat them one day, if he can. Start learning Makaton signs and use them with him so he has a back-up plan if speech is hard.

    There is no miracle solution Steph - I wish their were but in time it will get easier for him. Tom is still very very stiff and he's always going to be that way but he seems to have become more comfortable in his own skin and therefore is much less angry and upset than he used to be.

    Much love

    Maria xxx
  • stephgreen
    stephgreen Member Posts: 28
    Hi my little boy is 11months now and is stiff all over with spasticity in his legs. Im very worried that he may never be able to do the things which you guys have mentioned. He really tries to reach out but his stiffness stops him. Did you babies just lay there at 10 months. I know its a slow road but unsure what to expect from jack. Also i know all children are different and develop at different rates. Also are there any things which i should be doing to improve things or doing one thing more than the other helps. We do physio but jack just still seems so stiff. Hope to hear from you soon steph x
  • NicolaMc
    NicolaMc Member Posts: 8
    Steph, you asked exactly the question I wanted to.

    My little boy, Ewan, had his first birthday this week. He has quad CP, with a diagnosis of spastic CP (although I'm convinced that he has variable tone). Some days I so wish I could see a year or 2 years into the future and that would give me the energy to keep on going.

    As Mum we're with our boys more than anyone, which means we can be the last to notice the little changes and improvements that happen in tiny steps everyday. Most important of all remind yourself constantly that what we are doing is making a difference. There's no miracle solution, but every stretch, every exercise, every nursery rhyme... it's all making a difference.

    It's tough going. Some days I find my feet and I know that I can cope, that I will do my best for my little boy and will help him to make the most of his abilities, other days I really struggle.

    Ewan was never an 'easy baby' and at the moment he's a frustrated, very easily upset, one year old. You can hear him crying 3 doors away when he's in full flight. It can be so draining and could break my heart if I thought about it for too long. Then yesterday he held a block from his shape sorter (not an easy feat for Ewan), reached over to the container (with a bit of help from a friend on that bit!), and dropped the shape in, letting go of the block all on his own. He then beamed his world beating smile because he knew he'd done something ace! I walked on air for the rest of the day. What I'm trying to say, in a very clumsy way, is that we need to hold onto the moments like that to get us through the tough bits - small goals achieved that will make you both feel 10 foot tall!

  • NicolaMc
    NicolaMc Member Posts: 8
    Forgot to say... massage is a great idea. I know we need an armoury of ideas and that there is no silver bullet, but if I had to pick a single thing that has made the biggest difference it would be this. If, like me, you're not sure where to start then I found this DVD really useful. There are special sections on stiff arms and legs as well as a basic massage routine

    We've added in specific hand and finger stretches as well. Rotate each finger in turn 8 times in one direction and then 8 times in the opposite direction. Stretch out the whole hand for the count of 10, then flex the wrist with the hand still outstretched if possible for a further count of 10. Ewan's hands were permanently very tightly fisted until about 4 weeks ago when we started these stretches. The timing could be coincidence but his hands are definitely opening a little easier and more frequently.

    PS We did the macaras bashing to the Grand of Duke of York today - Ewan loved it!


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