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.

My DD got DLA at the higher rate. I did the form and my HV wrote a long bit on there too. I applied when she was about 16 months and I think she probably got higher because we said about her waking at night because she couldn't roll over.
I mentioned the problems with dressing due to stiffness, needing 2 people to bathe her, daily physio & swallowing problems too.
Now she's 2 I can apparently get her a blue badge independently from the DLA via the council which will make a huge difference to her being able to practice with her walker out & about.

On another note does anyone know anything about hips? Apparently Botox isn't normally done until 3 but my DD has been referred now because one ofher hips is starting to become abnormal. One is 9% and the other is 22% - any info very welcome!

Hi. We hit a brick wall with getting the blue badge until ds was 3 and got mobility. However we put the walker over the back of either a buggy or a bike and it was ok. To be fair my city is one where the driving just takes so long I hardly ever use my car even with ds so for us the blue badge was a nice to have but no more. As soon as we go elsewhere though it's great.

Ds had Botox at 2 and not normally until 3 is rubbish. Like many things I found it was postcode dependent and the paeds vary. In our are the issue was the transfer to community from neonatal as the neonatal paed wasn't the Botox paed.

I have never been told about percentages though so not sure what I can say. However Botox is quick and temporary and very very low risk. It's the one treatment I saw as a no brainier, but it only really benefits if you get very good follow up care. We had physio daily for a fortnight, then 3 times a week for the next 4 weeks and that was crucial. The NHS won't pay for that in our area though. The Botox on my ds hamstrings was revolutionary for his movement, walking (with a kaye walker) and w sitting though. We'd be doing it again apart from needing to wait for our sdr assessment.

Has anyone every spoke to DLA about the mobility side not being till they are three as we are getting a wheelchair for my DS2 and it just seems a bit mad that I have to buy a new car wen there Is a high possibity that in 2 year time he will be entitled to a car anyway and th only reason I need one is due to the wheelchair? I wondered if it was worth challenging?

Also I know I have seen people mention about their child's statements for school generally, I was wondering what this is? where you get it from? and at what age is best to start going the ball rolling with that if we need one?

and sorry for all the questions :) has anyone ever looked at a therapy called ABR Scotland it looks like it could be really good? but I was just wondering if anyone had first hand experience with it

Hi Choggers, if your LO will get mobility in 2 years does that mean he's only 1? Mobility component of DLA is payable from age 3. I didn't realise they gave out wheelchairs to such young children.
The theory for DLA waiting until they're 3 is that must children will still have a buggy up to that age.

Muchado, unfortunately I struggle to push the buggy with the walker hooked on too far as I have another preschooler who still needs his hand held. With my other children I would put them in their buggy to the village then let them walk. Now I end up driving so my DD can walk as her siblings did.

Botox definitely seems like a good option but I've been told after a few treatments the effect can wear off. There is no way we'd get 'intensive' physio on any account as our physio is PT'. I think we're lucky to get 1/2 hour every couple of weeks.

I requested statutory assessment a couple of months ago. Do many children with SD need a statement?

Pumpkin pie yeah my ds2 is 14m wheelchair services refused him at first but with a bit of a moan and ot n Physio input we have not been awarded a voucher for a wheelchair not going to cover all the cost but will help,

That was my thinking with the dla as I understand why isn't not normal till they are three but as my mobility is already affect surely that warrants a good case?

Choggers - have you found a suitable wheelchair for him ? I wanted one for my DD but after extensively googling couldn't 't find one. At that age they may as well be in a buggy unless they can self propel. Most kids wheelchairs are not low enough for a LO.
Saying that I did decide my DD should have one to use alongside her walker. A suitable wheelchair improves social and cognitive function and allows an element of mobility.

If you google "toddler wheelchair" one of the top results is a US news video. Look at it - it's a modified Bumbo!!
I watched it and decided my DD had to have one. After many phone calls and research we are now having one made by Cerebra. It is for her to self propel, has no handles and is about the height she would be if she could walk while still allowing her to pull herself up & out to stand if she can.
I could rave on about it for hours because the guys there have been amazing. The chair will be carbon fibre & the only problem was finding wheels small enough. In the end I resorted to handing over the wheels from my double mountain buggy.
I'll post a link to pictures as soon as I get it !

Melmo your dd having Cerebral Palsy does not in itself qualify her for DLA as such. It is the difficulties she has and the amount of additional support she needs, over and above what her peers have or need, that will determine whether she is awarded DLA.

So the DLA form will ask you what she can and can't do, for how long and how well.

Of course, her difficulties (that the DLA folks are evaluating) are present because of the cerebral palsy, so when I returned my completed form, I also sent copies of our paed and therapist reports showing diagnosis and their evaluation of our dd's difficulties, just as supporting evidence. These enclosures are not prerequisites as many people who do not have a diagnosis qualify for DLA due to the difficulties they have.

Apologies for the wrong steer on the age eligibility for the DLA mobility award - as others have said the DLA mobility element is from 3 years, not the 4 years I guestimated above .

Sorry its more like a buggy that a actually wheelchair, they do call them wheelchairs though and I have questioned it myself.
We have found two though Otto block have one and also one called the bug.

I googled the one with a bumbo it looks amazing think its pretty impressive what people have come up with in order to make lif that little bit more normal.

Also what does LO mean sorry still getting use to the lingo.

Does anyone know what criteria you need to meet in order to get the mobility from the DLA then?

Hi guys. Happy weekend!
Does anyone know of any slings suitable for 16mo other than those metal rucksack contraptions?

....a tall 16mo

Hi. We still carry ds in our ergo and he is 3 and a half. It's fab and allows us to still go out for walks even though ds can't actually walk

We tried a patapum toddler carrier, but ds slipped/threw himself to one side so it was never comfy for more than 2min. It was awful carrying him up a mountain in it. It was nice quality though, and I know others that got on well with them. So i wouldn't discount it completely, but maybe try to test one before buying if you're interested.

Hi Pumpkinpie11. Sorry I don't have any advice on hips. We had an X-ray and it came back fine so I don't have any 'hip' experience. Hopefully someone else might have some info.

Choggers I think LO=Little One. The Cerebra DLA Guide link on pg 23 of this thread has great info and advice on DLA. Cerebra quote from their DLA Guide to answer your Q on eligibility of the DLA mobility component:

"The mobility component, however, is not payable until the age of 3 years old, for the higher rate, and 5 years old for the lower rate. However, if your child is below these ages and has mobility problems then you should complete these pages anyway to give the fullest possible picture of their difficulties.

The mobility component works somewhat differently [to the care component]. To qualify for the higher rate your child must be unable or virtually unable to walk, or the effort required to walk be a danger to their health. A child who has severe mental impairment and severe behavioural problems may also qualify, as may some autistic children who have frequent and unpredictable ‘refusal episodes’. However, this is a technical area, and not something to worry about before completing the claim form! The form is just for you to give as accurate a picture as possible of your child’s difficulties.

The lower rate of the mobility component is for children who require substantially more guidance or supervision than a typically developing child of the same age whilst outside in places that are not familiar to them".

Choggers this link will take you back to June 2013 on this thread when a lovely poster gave me advice on applying for Statutory Assessment (SA) and the Statementing process. On the back of Chatee's brilliant advice, my 2year old DD2 has a statement (applied in June 13, finalised in Nov 13) and it has been worthwhile in preparation and applications for her starting the school nursery in Sep 14, and also has ensured that DD2 is being supported in her current nursery setting by our therapists and Birth To Five service.

www.mumsnet.com/Talk/special_needs/1671211-Support-information-sharing-thread-for-parents-of-children-with-Cerebral-Palsy-Part-2?pg=9

A 'Statement' is a Statement of Educational Need (SEN). It is issued by your Local Education Authority (LEA) and is a legally binding document which is meant to stipulate precisely the amount and type of support that a SN child is to be afforded in their school/nursery in order for a child to access education. To get a SEN, either the school can apply or parents can apply direct to the LEA for a Statutory Assessment (SA), which will set the ball rolling for the LEA to collect reports from all therapists, education psychologist, paed etc and then the LEA considers whether they should issue a SEN on a case-by-case basis.

However, there are also systems of support in place called School Action and School Action Plus. I'm not entirely sure what these are, but my understanding is that needs are assessed and support is delivered/financed by the school rather than at the higher LEA level.

Happy to be corrected if someone else has amplifying info - I'm also a relative newbie at this!

gonehaywire we have a metal rucksack contraption that falls under DH's responsibility for carrying (way too cumbersome and heavy for me). I'm not looking for a better solution, in case that 'qualifies' me in carrying duties

Off to google everyone's wheelchair recommendations as we've not looked at these yet (still using our buggy which seems fine for us at the mo).

Great info everyday and statements can be in place well before the start of school as you say.

DD is on School Action Plus so her needs are managed by the school but they have referred to outside services eg OT for equipment which has been provided for her. A statement normally buys TA time and any other specialist services or equipment not covered by other services etc.

LO = Little One!

Independent Parental Special Education Advice (IPSEA) website for SEN info on the SA and statementing process and template letters etc.

www.ipsea.org.uk/Apps/Content/html/?fid=54

cheers for that itsnothingoriginal. I had suspicions that the marked difference between the School Action/School Action Plus and SEN would be funding aka buying TA time. I'm guessing we got statemented because DD2 is expected to need constant 1:1 support hence an additional staff member.

sorry that IPSEA link was for Choggers re Statement advice, and for everyone else who'd find it useful.

G'night everyone x

Should I start thinking about statements?? Dd will be 2 at the end of the year. School seems so far off and kind of blows my taking each day at a time attitude. I know nothing about them. If we move away from our current local authority would we have to reapply all over again?? Or does it travel?

Also, little summer days is currently poorly with hand foot and mouth . Usually sleeps like a dream but not at the moment. She seems so restless, tossing, and turning, ultra fidgety, arms flailing all over. Could this be a CP thing? My eldest when sick as soon as she was snuggled up in bed would drop off? Does this sound familiar to any of you??

Hi summerdaydreams I was encouraged to apply for the Statement, but everyone that we've met in the process has said that we're very early. It's useful that its out of the way now for us (barring annual review), it's in place ready for school nursery and our current nursery setting is also following the guidance in the statement. However, if you have enough on your plate at the moment, then I'd say that it would be worth applying at the very least the year before Reception to give yourself plenty of time for the process to go through. Chatee advised I apply when I did as according to the SEN Code Of Practise, if a parent applies for Statutory Assessment before the child is 2 years old, then the LEA have no option and must undertake the assessment. After the age of 2, it is at the LEA's discretion/decision whether or not to assess. I'm not sure if the Statement travels with the child if you move.

for littlesummerdaydreams. Hand foot and mouth is horrible and dd2 had this last month and was very under the weather. I then caught it from her (rest of the family was fine) and it was truly awful. I can identify with the restlessness - I think its the virus rather than the CP. Usually when I'm sick I can 'sleep it off' but HFM was really hideous for us; I had dd2 at the out of hours doctor in the middle of the night at the hospital as she seemed so poorly. I think people can react differently or be affected to different degrees. Try to get plenty of rest yourself too. I looked up hand foot and mouth on the NHS website, and some reviewers in there also complained at how hideous the symptoms were. But remember, it is just a virus, and it will pass. Sending you and little summer and as I know how cr*p your dd feels .

The statement travels with the child if they move schools, but it requires LEA to LEA consultation if transferring into a new authority area. From SEN COP:

"If the conditions at 9:49 apply, the LEA must amend the statement to name the school proposed by the parents and inform the parents, within eight weeks of receiving the request. Before naming the school, the LEA must first consult the governing body, and, if another authority maintains the school, it must consult that LEA. In either case they must give the school a copy of the existing statement. The eight week time limit allows for this consultation, although the school or LEA consulted should respond within three weeks unless the consultation occurs during a school holiday period that is longer than two weeks. The LEA may specify in the statement the date on which the child is to start attending the new school. That date might coincide with the start of a new term, or give sufficient time for the school to make necessary preparations for the child’s arrival".

SEN Code of Practise:

<a class="break-all" href="http://webarchive.nationalarchives.gov.uk/20130401151715/www.education.gov.uk/publications/eOrderingDownload/DfES%200581%20200mig2228.pdf" rel="nofollow" target="_blank">webarchive.nationalarchives.gov.uk/20130401151715/www.education.gov.uk/publications/eOrderingDownload/DfES%200581%20200mig2228.pdf

Statements!!!
I've just had a letter from the LEA refusing to assess my DD as she is not "failing to make progress or not achieving her potential". Does the fact she can't walk, sit on a normal nursery chair, drink liquids or stand up not count?
I applied before she was 2 because it was my understanding that the LEA had to assess if a request was made for an under 2.
Does CP not count a a special educational need?

Not as such no. What you have to try and do is use the cp as a reason for your dd not to access education. Have you got any evidence you haven't yet sent? If so review it. Otherwise can you get support for early years for the moment. My ds had 25 hours from the early years budget because of medical needs (nursery applied) and we've only applied for the statement for school.

If you pm me your email I'll send you my request for the statement which got through.

Thanks muchado.
I've had a massive issue with nurseries. To cut a long story short one said they don't have space but the following day would have space for a 'normal' child her age & my initial 1st choice would only take her if I stay and agree to her being restrained in a wheelchair at all times.
As a result I had to remove my son from the nursery and now can't find anywhere that can take them both together. As a result she's going to have to stay at home with me until he starts school in September.
I didn't send any additional info as I thought they were going to get info from the people I named on the form.

I'll PM you in a mo x

Wow this thread is gaining speed.......hello to all newbies

statements

For anyone applying for a statement please use the resources available ( template letters / case studies) on the IPSEA website , there is also information on CONTACT A FAMILY website.

Read up on the SEN Code of Practise - it's not optional for your authority, it is currently the legal framework that must be adhered to......do not listen to any local myth that things are changing/ we are a pathfinder authority/ we don't do it like that here at xxxx authority. YES, things are going to be changing but until it has gone through parliament then the SEN Code of Practise is your friend ( as well as Mumsnet, IPSEA and CONTACT A FAMILY, SOS SEN)

If your child is under 2 years old - the local authority have to carry out an assessment, it's in the Sen Cop.....so the best time to apply is before 2 years as every child is entitled to attend a pre school placement / nursery with 15 hours funded the term after a child is 3 years....
Why should your child have to struggle from the start when there are systems in place to ensure that children are supported properly.

The easy option for an authority is to send a refusal to assess letter to everyone that applies as they hope that you will not take it any further ( and let's face it a family with a child with disabilities has enough to cope with without the additional burden that challenging the authority over there incorrect decision to assess their child) but the authority are happy as it has saved them money ( and that's all they are interested in). My child is older and I can safely say I have never met a professional who is actually more interested in the individual needs of my child than the impact of my child's needs on their budget.
Pumpkin if you want to pm me then please do.......
Off to do bedtime will pop back later xx