Parents of children with CP... Please read.

[Galena]

Just wondering, does it get better? Not the CP, I know that's static and won't get better or worse as such. What I mean is the endless hospital appointments... I counted up and in the next 9 weeks we are going to be at one of 2 hospitals 7 times. Her consultant, orthotics, developmental check, joint orthopaedic/paediatric/physio clinic, physio, respiratory clinic (she also has asthma...) and allergy consultant (...and hayfever). Since the physio raised the possibility of CP in April, we've already had 2 orthotics appts, 2 consultant appts and physio.

So in 6 months it'll be 12 visits. Is this likely to carry on? She's 2 and was diagnosed with mild diplegia in June. I just feel like my feet aren't touching the ground at the moment (and I want my own named and free-of-charge(!) parking space!)

We also go to the CDC twice a week for physio sessions and go to a swimming group at the local special school. Bless her she copes pretty well, but some days we only manage her stretches and other physio twice in a day instead of the requested 4 times and I feel like I'm failing her. :( I know I'm not failing her, but I want her to have the best chance and when I'm tired and it's been a busy day (like today) I feel guilty that I haven't made the time for her stretches.

Sorry - this wasn't meant to turn into a self-indulgent post. I shall have and paint on my 'I'm coping' smile.

Hiya galena my dd does not have cp she has retts but we have the same thing.My dd is 12 now things do slow up a little with time but we still have times where it is non stop appointment-physio,orthotics,paed,orthopaedics,s&lt,ot,reps for different equipment,eye appointments,dietician etc.
Am sure you are not failing her you sound like a lovely mum but there are only a certain amount of hours in the day.

Hi Galena, we had most of our appts in the first year following my dd's HIE at birth - consultant every 2/3 months and physio/speech/OT assessments. Since then we have whittled down to the things she actually needs (physio/OT) and there are much fewer appts.

I often think I'm not doing enough - I forget to do physio every day and feel guilty too!

First year was pretty bad. Then made mistake of applying for statement. So continued for another 20 months! Now just have to put up with paed every 6 months (serves no purpose whatsoever - wondering when I can decline the appointment). Otherwise in theory we actually get to see people as necessary - so orthopaedic consultant for ds's hips (though saw her twice once for our benefit; once for total waste of time / tickbox / team around the child type rubbish). Can never totally escape the bt!

I work with adults, they have (and have in the past had) precisely fuck all, because they were written off as useless. No speech therapy for those with no communication ability. No signing lessons for those incapable of speech. No physiotherapy for cramped and spasming limbs. It's a lot harder implementing these things for a person in their forties and fifties than it is for a small child.

Please don't feel that I'm doing you down, I just thought a different perspective might help

I felt bombarded with therapies when DS was small, with loads of different charts to tick and hoops to jump through. I hated therapies and feeling as if I had to be a therapist! All I wanted was to be a mum, and meet other mums with special needs children and do 'normal' things like parent and baby groups. Therapies seemed pointless as he didn't seem to progress at all and none of the therapists seemed to work with each other and nobody asked us how we felt about it all.

From the age of about 7, trying to get him SALT, physio etc., is like getting blood out of a stone! I feel better now, but the therapy is not forthcoming at all.

It does feel like a treadmill Add to that the guilt you feel when you take a day out in the park and dont do the exercises but just do 'normal' stuff

Sorry having a very off day today, am usually v positive - as in pollyanna !

Hi. My DS was diagnosed in February. He is 16 and a half months. And has mild or mild to moderate dipelgia.

We have paed about every 3 ish months at the CDC. We have physio weekly at the CDC (£3.50 a time for parking - no space, rubbish car park with no space to take a baby out, no P+C spaces so I have real difficulty with carrying DS out of the car but that's a different story). We have respitatory clinic also about every 3 months. (we've had 5 consultants apps since feb). Have a referral for orthotics. Been told it will take weeks to come through and try ad find small enough piedro's in the meantime (they suggest french websites). Also DS physio goes to nursery about monthly.

as for the exercises, we are told not to stress about how many times a day. They say aim for 2-4 but don't worry. I have kind of lost count of how many times we do manage to do them. The thing I do feel very strongly is that they have become second nature now, and just part of play so I just don't notice. Physio also say going to swings etc counts as physio because of the need for DS to learn about balance.

I have a friend with a year old who has much worse cp. He is 4 and walks etc. (DS can't yet) She told me to not get worked up. She does no physio with her ds. they do it at preschool. She has lots of appointments but has a rule never to cancel anything fun for the hospital. And to try and make the hospital fun, play out in the garden with the toys, look at building work etc, she has cofffee and cake etc.

A couple of adults have also told me they never wish their parents gave them more physio, sometimes that they had more fun. I think that's perhaps the best advise I've had.

In many ways I am fine, in many ways I am still really struggling. My Doctor is concerned about me trying to do too much, and that I may be too stressed. My FT job is under review and office may be closed. My MIL is staying at the moment and has huge care needs herself (she can hardly walk due to arthritis and only has DH to rely on- I spent two evenings this week moving furniture into the study so she can sleep downstairs, and then another hour after dinner moving it again as it wasn't right while she told me she was tired as she had done so much that day after I had been up for 15 hours, done the physio exercises twice, done 10 hours work and cooked her and DH dinner. I think she had sat on the armchair, watched tv and gone to the loo. DS who cannot walk had covered more area with his commando crawl!)

Thanks everyone, I'm glad it does ease off a bit, and it helps knowing others are going through the same.

Purple, I understand exactly where you are coming from with your message, and thanks - I know how lucky we are that we are having such great support so quickly. And we're also very lucky that all our professionals seem to work together - her physio was in the paed appointment where we got the diagnosis, the physio is also going to be at the joint orthopaedic clinic, etc.

Hilda, I'm in awe! I'm struggling and I'm a SAHM with no MIL to look after.

Thanks for taking it in the spirit it was intended - it makes me so furious that my lovely residents were written off by society, and in some cases the abuse they have suffered (and are physically unable to talk about) is horrific.

Parents of children with SN children still have a battle on your hands, and that's not right. But it has got better over the last few decades

Yeah, it's awful how people were treated years ago (and still are in some places). DD is one of the lucky ones - she can communicate well (and sometimes I wish she'd just shut up draw breath every so often) and will cope fine in MS school with possibly a little extra support at times.

Despite my experience working with people with SN, i only realised quite how neglected people have been, even in my lifetime (30 this year) when I started working with adults last November. From my point of view, hearing about how hard you and the professionals are working to help your daughter is fantastic, because 20 years ago you'd have been handed a manual wheelchair and told to get on with it. Or, here's the form to sign her off to an institution. Dude I work with most is left-sided hemiplegic and has a speech impairment. I discovered he could read a few months ago, afaik self-taught. He's in his mid-forties, I take him to do the weekly shopping and he's quite capable of choosing even stuff like curry sauce which always thoroughly confuses me with all that choice with my onput only being to point at them til I get to the one he wants. it's taken four decades for anyone in his life to find that out

Oh boy - that is incredibly hard. It's terrible how written off perfectly intelligent people can be.

sorry, i'm really not meaning to bring you down. It's just that the work you do now with your dd will have results in the future that might be hard to see now

Yep. :) you aren't bringing me down, rather reminding me to count my blessings. Thanks.

:)

It does get better - you weed out what's not really useful and sometimes you even get discharged(!) from things. You begin not accepting the first appointment offered in favour of a more convenient one, or combining 2 appointments during one visit. Then perhaps certain things can be done at school rather than out of school.
DS (16) and quad has one 'outside of school/college' appointment in the foreseeable future (which he is pushing me to cancel).
My problem is the opposite - DS is 'leaving' me for college in September and wants to board Mon-Thurs nights and share a room with his best mate and hang out with the lads. I think I shall retire to a corner and have a breakdown.

And purplepidjin, thought you'd be at BugJam? Unless you are posting from the beertent.

Bugjam sold out, springlamb! They ran out of space, and are refunding even advance tickets!!

I have work today, tbh unless DP is working we don't haul ourselves across the country to shows

Well DH texted Friday lunchtime to say the queue to get in was 5 miles long, so not surprised.
He would usually go up Thurs night but we had so much end-of-term stuff to attend he delayed.
Ah well he will return tonight all stinky, as usual.
Right, off to the ironing.

Lol, springlamb, you're lucky he didn't come home with his tail between his legs!

You doing Action?

hi galena dd2 is 7 now and i can assure you it's waaaaaaaay easier than the first few years. she's always been in mainstream and is one of the kids with two ieps running, one for the physical difficulties and one for the g&t . she was statemented with 1-1 to start (her speech was quite difficult to understand and she needed help getting around. fine motor issues etc) but now manages pretty well with some minor support. she's down to one block of ot and physio a year (six weeks of therapy) as the rest of the time we know where we are and don't need the input - plenty of kids in more need. she has all but been signed off from slt - as her difficulties are neuro based, at 7 her speech is pretty much as good as it will ever be, and she knows how to improve clarity if she needs to.

this is really due to the very intense start and early years therapy she received. we had physio, portage, slt, ot and she spent three years on high rate dla and then hr mobility as she needed very intensive input. all the hard work has really paid off. the good thing is, as we've used all the services and are in an easy patch, we know where to go to get anything else we need if other things come up due to growth etc. we know how to deal with the paed, with therapists, with school and the lea. so the years of tears were sort of worth it in a funny old way - they provided dd2 with a really solid developmental structure, and they provided us with a really good road map of cp in terms of what might happen and who you might need to talk to.

dd2 made the most developmental strides between 3 and 4. life got much easier.

just remember to take some time for you along the way. stop and smell the roses as well as worrying about all the thorns, and all that.

Galena, ds has a working diagnosis of gdd, and we are waiting for an MRI scan.

I read your post and laughed,not because it is in any way funny, but because I had just counted up the number of appointments and hospital visits we have had with ds, and it is about the same as you. 12 appointments, 1 TAC meeting, 4 home visits, 2 trips to A+E with breathing issues and 1 hospital stay for bronchiolitis. I can't believe ds is only 1, and everything has been so full on.

I said to dh the other day that it feels like a part time job, just keeping on top of it all.

I am aware that we are lucky to be getting this level of input, and it is all very beneficial to ds. It is sometimes exhausting though, and sometimes I just want to forget about it all, and just get on with having a lovely time with him and his sisters.

Thanks everyone for your comments. It's all so overwhelming - especially since she had been discharged from all physio and paed follow-up from her prematurity (born at 27 weeks) by 10 months of age! Since then she's had 4 admissions to hospital with breathing issues (finally diagnosed asthmatic after the last one) and now the CP. Part of me wonders whether if we hadn't been discharged so early whether her CP would have been picked up quicker. That said, I certainly can't fault the support we're now getting!

And now I should go because we have an orthotics appointment soon!

hi Galena! it does get easier! ds was born at 26 weeks and is 7 now, he has Quad Dystonic CP & Chronic Lung Disease, theres nowhere near the same amount of appointments now, it does thin out as they get older thankfully.
are you on SK too, think i recognise the name?