Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

pumpkinpie I can't believe those nurseries. That's terrible to treat you and your dc's like that. I'm really shocked they wanted to restrain your dd to a wheelchair at all times!!

Pumpkinpie11 so sorry to hear of your nightmare with nursery and LEA . I wrote a one-page request for assessment and our LEA wrote back and asked for a parents report plus any other supporting info we had. So I completed their report, which had very open questions with lots of space to express our concerns, plus I photocopied every paed, OT, physio, SaLT, portage report I had and sent that. Mahoosive envelope! They came back and said they would assess and got up to date reports from all therapists involved.

Our early years budget is accessed through the 'Birth To Five' if you have similar in your area. I think you can approach them direct and they may also be able to assist in finding you a suitable nursery placement. This is the department that assesses and funds the nursery/early years places for 2 year olds in our area (for those who have SEN or on income support I think, in addition to the national requirement of 3 year old funding).

I too am happy to send you my initial (short) letter of SA request. But my copy of my completed parents form was written hardcopy, so I don't have an electronic one to send you. While we mentioned DD2's CP, we concentrated on the difficulties we expected her to have in accessing her environment and how this would impact on her academic development. i.e. she wouldn't be able to stand at an easel unassisted, or get toys from a shelf without help, or get dressing up clothes off a hanger and put them on unassisted, or get on or off the toilet without assistance/handrails etc. I even mentioned she'd need direct support on school outings and trips, expecting her to need to be pushed in a wheelchair for medium distances (beyond 20 steps!). So lots of quite specific examples. Hope this helps.

Hi, I came across this thread while using Mumnet and thought this may be useful for some of the parents reading / writing here.

I work within Conductive Education (I am a qualified conductor) and am starting FREE sessions in the Bristol area in the new year. Offering sessions to children (and their parents) teenagers and young adults with Cerebral Palsy, developmental delay and other motor disorders.

Conductive Education is a holistic, movement based educational approach for children and adults who have neurological motor difficulties.(see www.meganbakerhouse.org.uk for more information about Conductive Education) The sessions work on developing gross and fine motor skills, problem solving skills, confidence and self care skills.

Please email me if you have any questions on [email protected]

Natalie

X-post with Chatee (everyday waves ), who is so, so right about using the available templates and getting up close and personal with the SEN Code Of Practise. It looks a big document, but it's written in plain english so very accessible.

Quote from paragraph 4:47:

"If an LEA believe that a child in their area who is under the age of two may have special educational needs for which the LEA should determine the special educational provision, the LEA may make an assessment of their educational needs if the parent consents to it, and must make such an assessment if the parent requests it. Such an assessment shall be made in such a manner as the authority consider appropriate. Following such an assessment, the LEA may make and maintain a statement of the child’s special educational needs in such manner, as they consider appropriate.

See Section 331, Education Act 1996"

I've underlined the important bit IMO. This dictates that the LEA are to undertake the Statutory Assessment given the reported circumstances, but does not necessarily guarantee a Statement being issued.

Hiya everyday, hope you and your little one are doing well - have you seen the link Galena posted the other day with her dd's improved walking? only a short time after her op......amazing and must give hope to others, I certainly think it would have helped me to see that when dd was younger.
This thread is fab as it makes you realise that you are not alone......enjoy your children whilst they are young as teenagers are a totally different specie, especially teenagers with a disability cos life is so unfair.........oh well tomorrow is another day

yes saw it and commented - really encouraging

I have 3 DSD teenagers who are lovely. They're not disabled and still think life's unfair so teenagers are all the same regardless!

Must agree and yes, think I am also guilty of keeping number 2 child younger and not wanting them to grow up.....silly I know x

Thanks all - will try to PM a couple of you shortly.

I have read the SEN COP almost cover to cover and that's why I applied before my DD was 2. The LEA however waited until after her 2nd birthday to refuse.

Does anyone know where I stand or is this a grey area?

I'll give IPSEA a call this morning.

hi everyone. I am a newbie with a 1.8 ds. just wanted to thankyou all for the amazing wealth of advice and info that you all contribute. it is warming and encouraging to know that none of us are alone in this journey.
had our complex needs assessment last week with community services - 1st since being discharged form hospital services. the consultant paediatrician said that there was no way ds would get individual funding for a nursery place when he is 2 and was no point in asking for an assessment. He has quad spastic cp.He can sit (just), but cant crawl, or stand. his speech is age appropriate but his understanding is delayed to a 12 month old. should I still push for an assessment. she said I should just apply for the 'vulnerable 2's ' funding that he will get as he qualifies for DLA, and the physio/ot/salt will go into the nursery and advise the nursery staff. Should I accept the consultant's view or push for an assessment?

Hi. I just want to say that I got funding for DS when he was 11 months actual age. And well before we got DLA which I only got at about 15/16 months.

At that time 5 hours but it increased and has been 25 hours since he was 2,2. DS diagnosis is mild/moderate spastic diplegia. So there is help out there. It did help that we got the place at nursery before we had to get the funding and they did all the fighting for us. So if you can find a nursery that will take your children and they will help then funding can sometimes follow. It did with us. I would also say please keep pushing as to know you have a nursery that can provide 1-1 support is invaluable to DH and I when we just need a bit of down time.

Hi everyone, I know everyone is different and there is no definitive answer but am looking for some hope and reassurance that my daughter will walk.

She is 26 months old actual age, is a twin born 7 weeks early. Her twin is not affected. Following an MRI scan we found out that she has PVL white matter loss in her brain. She is classified as having mild CP diplegia affecting only her lower legs.

We have been going to weekly physio now for months. Before we went she couldn't even sit unaided. She now sits unaided, can proper crawl fast and can cruise furniture if holding on. She can now walk a few steps if you hold her hands but she tends to cross over her feet. She gets there but she is slow and needs a lot of support.

We go to weekly physio, use a standing frame for around 1 hour a day and do playing physio and stretches everyday. We have just been seen recently by orthapedics and got piedro boots to offer her stability. The Ortho Dr said that outcomes should be good for her. Her physio just says that she is making steady progress. Sometimes I am afraid to ask too many questions in case I don't like the answers.

My question is, is there anyone in a similar situation and did you child walk and if so at what age? Also what steps did they take to get there? I don't expect it to happen overnight but there are signs of encouragement like when she is on the floor she is pushing her bum up in the air like she wants to get up but just can't quite manage it. I don't know what else to do beyond what we are already doing to encourage her to move and get on her feet.

I'm certainly no expert Albaba but it does sound to me as though she will walk eventually. All the signs are good and she's continuing to make good progress which is what we were told was key. You are clearly doing all you can to help and I'm sure the crawling and cruising will all help her get stronger and with the coordination she needs to walk.

I can totally relate to the frustration though - even though we were told by our physio that DD was making progress it all seemed painfully slow with her milestones. I didn't like to ask questions either especially before DD started to walk.

Hi salbrook - maybe you could take up the nursery place and then see what they say about pushing for additional funding for your DS when he starts?

Well done Albaba you were just looking for a bit of advice and you have managed to kill a long running and sucessful thread..

Hello, I just wanted to add something from an adult perspective with CP. I was diagnosed with Spastic Diplegia when I was one. I am now very happily married with 2 boys, 1 aged 2 and 1 aged 3 months. I run, cycle, ski, get drunk, have fab friends. CP has not stopped me or held me back in any area of my life...well perhaps ice skating is a bit of a problem (didn't stop my parents putting me in lessons though when I was 5). Also horse riding, because my left leg is the lazy one, when I try to horse ride I end up sending the horse round in circles as my leg won't stay firmly attached....

I know the diagnosis of CP can be scary, and I walk with a limp. But if anyone would like to PM me for personal advice from some one has been there, done that, and is still wearing the t-shirt, i am only too happy to help.

xx

Albaba the thread goes up and down quite a lot. Some days lots of post, some less so. Bear with us.

For what it is worth I think your dd will walk. How far and when is very difficult. It can be difficult to predict and i really get where you are coming from about months and months of physio. My DS cannot yet walk and I have been on this thread since the beginning (with different names) looking for the answer you are looking for. I have read about younger children who have learnt to wlak at a younger age. But I still believe that my DS will walk. He may however need a walking stick and/or chose to use a wheelchair when he is older for ease/stability. Some of what matters is which muscle groupd are affected. For my DS its his hips and that is worse than his ankles. He doesn't toe walk much but the last bit of straightening is such a struggle. One of DS physis thinks he may never walk and mostly he is assessed as level 2/3 on GMFCS which is the best predictor out there (but still very unreliable)

Anyway coming back to your question, the general rule is if you child sits by 2 they are likely to walk. Also all that physio does help, but it can be hard waiting and working and seeing little. We now realise that DS kind of goes up like steps rather than in a line and he seems to have spurts of progress then nothing, then another spurt. Often inversely correlated with growth spurts.

Do you manage to do non physio exercise (swimming?, riding? tricycle?) I appreciate it must be hard with twins, but the more the good stuff is fun, the easier it is. My DS has just decided he wants to dance. he can't stand but he will dance holding on to his friend. Could your twins dance together even if the disabled dd is for example kneeling?

Also for us we found more intervention was better so botox was amaxing but we had to push for it. we also have had lycra and splints (not piedros) but that is a postcode lottery. Some areas have hydrotherapy but we can't get that.

Alibaba - I agree with muchado in that it does seem as if yr dd will walk. My dd started walking at 2.5 years old. She was pulling up at about a year of age but on her toes and it was painful for her :( Initially she toe walked - even in DAFOs. She had SDR recently and is walking again but not yet as strongly as she did pre-surgery (which we expected).

Albaba, I completely get where you are coming from. The endless physio, the daily stretches and exercises and no obvious sign of improvement. It is hard! Unbelievably hard and sometimes truly demoralising. It must be particularly hard when you have a twin who is doing all your other little girl can't.

I think your daughter sounds like she is doing amazingly well and I too think she will walk. It's just ' when' is the question. And that is the hard thing about this CP journey. Just try to keep the belief that she will.
I have given up thinking when. But continue to believe she will. Dd is still not crawling and not walking but she will i really believe it.

I know it is hard but when I am feeling down having seen a much younger baby doing far more than my little one, I look at all she can do and think back to this time last year and realise yes we are behind but we are on our own journey of milestones and we will make it.

beautifulbabyboy what a lovely post, really inspiring

Hi Albaba sorry you've felt like a thread-killer, I have been away with work all week. We are all still here but we do dip in and out .

Our dd2 is 2.5 years old and she started sitting at 18 months and at about 2 years was pushing her bum into the air as you describe. Then she went on what I consider to be the typical walking development path, only much delayed and at a slower rate of progression. If she had been left to her own devices, I am certain that she'd still be rolling to get wherever she wanted.

DD2 could weight bear fairly early on, so we'd position her on her feet (too difficult for her to get up to standing position) and put toys on the sofa so she was entertained while standing and she leaned forward on the sofa for support. Then we'd put choc buttons/TV remote control/any desirable object on the other end of the sofa to encourage her to sidestep for it while holding onto the sofa. We started the sidestepping by moving her feet for her with our hands until she got the idea. Then holding both her hands and taking a forward step. She's now able to take about 40 independent steps, can climb out of her (very low) junior bed/cotbed without bars, and using the wall as support, stand up and open her bedroom door.

Her new trick this week is to climb up stairs. It takes quite a while to get her little foot up and posited on the step before pushing up; we've/I've done a lot of work with her to position her foot and then tell her to push up as I supported/gently lifted her torso so she stood up. We've been doing this for about a month, now she can (very slowly - one step, then rest, one step, then rest) climb. She now positions her foot by herself, and then pushes up with her little legs, while her hands are holding onto the stairs, 2 steps up. She pushes our hands away if we try to help now

As Muchado says, we also do lots of physical non-physio work. Dancing (bobbing up and down bending the knees) holding hands to all the CBEEBIES songs (music is a great motivator). Ring a ring of roses (side-stepping slowly round in a circle holding hands, then down to knees and then I lift her back up into the air that she loves. We do Portage swimming which might be considered hydrotherapy (?) where she's encouraged to kick her legs, splash with her hands, float on back and front, 'jumping' in etc. I'm enrolling her for 'Water Babies' in the new year to get more time in the pool for us. She likes her toddler trampoline (holds onto bar and bounces from the knees) and her trike (feet are resting on peddles and grown-up pushes trike to make her feet go round on the pedals).

I think your daughter is showing positive signs of walking and you're doing all the right things by encouraging her onto her feet. I hope my experience above has given you a little hope, but it hasn't happened overnight. We've also found the development happening in spurts.

Beautifulbabyboy thank you so much for your lovely post. It is difficult for me to look ahead into the future and imagine my little kids as being adults with lives of their own. But your post brought it back to me that that is precisely why we're working so hard with DD2 to enable as much independence as possible so that she does have a 'normal' a life as the rest of us, and all the opportunities that holds.

Your post made me reconsider dd2's position - she's not always going to be a child. So I'm not trying to help a child with a disability, I'm trying to develop a child, who has a disability, into the best adult she can be. Does that make any sense at all?

I'm at a stage now where it's safe/comfortable/realistic for me to think about DD2's future and I look forward with hope and high expectations that her fighting spirit, wilful nature and good humour will carry her far. I have one exception: high school frightens the heck out of me for her (I'm happy with the thought of primary school in a year and a half's time).

Thanks again for sharing your story with us Beautifulbabyboy xx

Glad I could help a little everyday. Please please don't worry about high school - I had no real problems. A few kids tried to call me a spastic, but to be honest those kids had enough problems of their own.... Kids can be bullied for a multitude of reasons, cp will only be one of them. Just give you child the same tools as you would an able bodied child and they will be just fine! I remember once lamenting to my 14 year old friend, that no boy would ever fancy me because of my limp, she looked astonished, before proudly proclaiming there was at least 1000 reasons why a boy wouldn't fancy me, and my limp didn't even make the list! anyway, teenagers are actually lovely and loyal. Your child will be fine. X

It also does make sense what you said. You can still have the same hopes and dreams for your DD2 as you would have done prior to diagnosis. I think people worry they won't have great careers, marry, have kids. There is no reason why not! I just wanted to say that. Xx

beautifulbabyboy thank you so much for sharing with us. It is great to hear from an adult with cp, and to hear how ' normal' your life is. I agree with what everyday said, not even seeing dd4 as an adult. Silly I know because one thing for sure in life is we all get older.
Thanks again for showing us that we are fretting unnecessarily. :)

Welcome to the thread beautifulbabyboy it's heartwarming to read that you have had a full and happy life and that CP hasn't got in the way too much. I started this thread looking to connect with other people in a similar situation so we could all lean on each other for support and I'm not the same woman I was then. I'm a bit more clued up - also a bit more hopeful. I cherish all the milestones my daughter reaches. Thank you for sharing some of your story :-)

beaufifulbabyboy it's amazing how a few well-placed, experienced words can really put someone's (mine) mind at ease. High school seems less daunting now.

Thank you for showing us that we shouldn't be frightened to have dreams for our kids. I got that from your post xx

Really glad I could help. I imagine being told your child has CP is scary and frightening (obviously being only a baby when my parents were told I wouldn't know!) there are some things that are more difficult obviously, and when I was little I think my parents were so focused on what I could do, they never allowed me to hate it, and I think that is important. So if your kids went to shout and scream, please let them, and only after that then tell them how lucky they are! CP is not the worse thing in the world.

I know there is a lot of focus on milestones on this thread, but also please try to ignore these. I couldn't hop until I was 10 ( I still remember the day, we were in a restaurant in Spain and everyone cheered!) and it was only in the last year of primary school I managed to do the high jump which was set at the level for reception class!! Again everyone cheered! These are happy memories, and because I had to work for them I think they are all the sweeter. Being delayed in teaching milestones is not the end of the world...