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Just discharged from child development team... Frustrated(20 Posts)
Paediatrician just said she doesn't need to see us again, other areas of he development are progressing so it's just a language issue.
Dd was first referred to salt at 17 months... She's nearly three. Her language is still at around 12-15 months so basically we have been discharged to nothing and no one. Three referrals, I've chased... Nothing so basically dd will be seen by no one now. That's it.
I nearly laughed, the appointment today was all 'which is the big boy, which is small'. 'Where do you sleep' dd was blank as, she doesn't even know the words boy or bed!
The other non-issues glossed over:
Barely eats, slowly tracked from 75th to 2nd so far
Diagnosed hemiplegia, by gt or one St, they say it's resolved ( didn't use one hand the entire time, only I notice....)
Seizures ( will be seen in epilepsy but not linked in)
Still unsteady on feet for age
Hearing loss, wears aids
Obsessive on routine
Hates other children
Hits and bites
Doesn't even acknowledge conversation, barely looked at woman
Toilet training, zero awareness
To be fair she's happy and sunny, but surely this is a child that warrants a bit of bloody support??? I dread nursery in September. She sticks out at any playgroup and wen we visited nursery all the other children referred to the 'baby'. It's like sticking a baby in there.
Honestly felt like crying, I told her it's not my first AND I'm a nursery teacher. I know what is in the range of normal and I do a lot to help her development...
Told them I saw it as a waste of my time, she looked awkward and sad shed personally chase salt... I laughed and left after telling her I've heard that over and over. I've always been polite...but it was like being told honesltly, this time I'll make the pig fly.
Its all about money sadly Its as if as soon as a child starts nursery or school the services are whipped away like lightening and then the schools/nurseries have to buy in the services!!
I dont know your Dd obviously but is she going to be getting one to one support at nursery?
FLIP. I don't have any advice as such for you but I can sympathise as I know how difficult things can be. Sometimes I know to therapists etc you are just another case that they have to deal with when the situation is your reality what you have to deal with day in day out. My dd is 3.5 and has cp. Once we got in to the system for physio I have to say that the physio is good, reliable and sees her on a regular basis. Compare this to her Social Worker who we are supposed to be having a meeting with. She has just cancelled our appointment for the third time at short notice supposedly something more urgent came up. Why bother making appointments if you are not going to keep them and waste our time?
Anyway your daughter does sound like she does have numerous issues and would need extra support. My dd is due for preschool in September. She is getting a statement which is currently work in progress. We just heard yesterday that her nursery has received additional funding and are advertising for a position that my dd will get extra support. She does walk but couldn't do any sort of distances, her balance is poor and she would fall easily. Its so difficult when you compare your child against others and they are falling way behind. Intellectually no problems and no problems with SALT just purely physical. Its really hard when I see other wee ones bouncing about effortlessly and my dd struggles. She is not toilet trained yet either. I am going to really have to make an effort with her over the summer. I know children can be cruel too and its just so hard when it is your child that is different.
You have my sympathies. You really sound like you need to stay in the system and that your dd will need extra help and support like mine at Nursery.
She isn't attending a nursery nor have I applied. The local ones just aren't right for her, especially without support( none planned). Ratio 1:7 with her clueless in the middle? The worst was attitudes towards her. Preschool won't take kids in nappies and school nursery looked like I was asking if I could shit in the home corner when I visited and they heard her level of language. Just unlucky with local provision.
She has never met a therapist, not once. Peadiatricians refer but nothing happened. I'm not even sure how a nursery would react if I told them she might have seizures but then they have no info. I've heard a rumour salt only see kids with a two year delay.. Bit hard when you're two to have that!
Sorry but you did say "I dread nursery in September" in your post so I assumed a place was waiting for her!!
Anyway, they cant refuse to take a child in nappies because all sorts of disabilities/special needs mean that children can train later, excluding them on this basis is disability discrimination!!
Secondly go back to your GP and get a referal to physio if you are worried, the paed sounds crap so side step her/him.
Then ring SALT and self refer.
Then look at IPSEA website and find out how to apply for an EHC needs assessment.
Lastly stick around on here and ask any question you want, someone will always be around to help.
Good luck, Your little girl needs you to be strong and advocate for her, be her voice because she cant do that herself
Thanks, so far I have hunted down the SALT on three separate occasions face 2 face as she runs a drop in at a children's centre. Each time she has promised to call me after taking my number. I'm rung twice, two hv referrals, 2 community paed referrals, one hospital paed referral and audiology referral to SALT. They bloody know about her!!!!
The local preschool (no nappy place) is a church hall affair run by mums, no waiting list or criteria published, I'm sure if pushed she'll be on their list forever if they don't want her.
The school will have her but only in the afternoons as they have 'more support'. I have to take my son to a school 20 min walk away (he's only five) and the afternoon sessions finish at exactly the same time, no even car/ bus is little use. I can do mornings, they apparently will be full in mornings. Plus I just didn't like them. 'support' looked like someone's mum/ a dinner lady following a few children and smiling whilst the teacher taught and interacted with the rest! Cynical, but it was poor. I visited a few weeks back and the outside area was unused and undercover as they use it 'in summer'.... not even two months to the holiday! Also being practical they was a lot of rough play etc (I'm a former nursery teacher I know the norm), not a good environment really for a child who has blank spells. It's a shame the local preschool is a pleasant place and a 1 min walk away. I have limited choice due to existed school pick up for siblings. Again although school have admissions criteria there is no criteria for am/ pm allocation so can't really prove there's a space. DD looks much worse on first meet than she is, tiny, hearing aids, jargon, squealing, hiding from others...they don;t see the child she is once she's over initial fear and I think it puts of a certain type.
I'm being optimistic there will be a place anywhere in September... I've applied to 3, and it's getting late for replies.
I'm less concerned about physic, I know the normal activities to do with nursery children who need a little catch up from work and progress with motor is steady. The speech however, despite me having supported tons of children with speech delay at work, just seems to go nowhere. She can't even point to her nose after 2 yrs of near daily singing and games around body parts!
I know I'm ranting.
EHC request will go through the same child development team who've just discharged her as fine. All one integrated service here.
She was 10.4kg in November and is 10.5kg now, but is growing/ eating fine. It's like being in a parallel universe where someone sits in front of you and say green is orange and apples fly and only you question it....
Re slt. Where does your slt work from? A hospital? If so call pals. If not ask pals at your headrest hospital who you need to talk too. Been on the phone myself doing this to get my eldest reffered to a community pead
Is your dd under a pead for hearing / seizures? If so write / email the secretary. Pals is the way forward to get a rocket up the pead to ensure the refferals happen.
My sons pead made four refferals. None went through. I phone the two services I was most in need of and they jumped us up to the top as we'd been waiting six months already without knowing the paperwork was lost!
have you applied for DLA? if not I would do that. I used DLA to fund therapy as we got very little on the NHS.
also, chase up referrals and if nothing happens go through PALS. have done this and worked for us.
Can you ask for a 2nd paed opinion? worse case - is going private an oprion? with all the issues you describe I wouldn't be happy about being discharged either.
I'm so sorry you are going through this.
Firstly, complain in writing to PALS, your MP and the director of the NHS provision in your area. Ask for a second opinion (we did and after five years we finally have our ASD diagnosis that the paed claimed wasn't there!) and do not stop. You know your child best, you are appropriately trained as well.
Def apply for DLA. Quite honestly I wouldn't worry too much about nursery/preschool, toilet training (my DD was 3 1/2 before she did it and there was no language barriers) or any of that right now. I'd concentrate on the SALT side and give that and the paed brush off all your attention.
Basically kick up enough fuss, they will see you to shut you up! But it will be worth it in the end. Trust your instincts and stand up for what you believe in. It's you that lives with your child, and deals with these issues on a day to day basis. Good luck!
It must be horribly frustrating for you, I'm sorry to hear what you are going through.
If you suspect ASD you could self refer to The Lorna Wing Centre in Bromley. I did this for my dd without ever visiting the GP, ( except to explain what I was doing). They are extremely thorough and will evaluate what you say and then decide whether to assess or not.
Really good advice from others. I complained to the chief executive of our local hospital trust and my child's SALT provision was doubled, still inadequate but went from 3 visits a year to 6.
Is there any portage or special needs play service in your area too that the GP can refer you too.
Would also think about paying for a second opinion. IME once you start spending money and getting reports, other professionals will have to listen.
Good luck, it is horrific and frustrating but you will get there.
This morning was a wonderfully different day!
I discovered a local children's centre has a preschool! Looks great, hugely clued up on sen AND their manager told me she'll apply for funding for her to start early and have more hours! Even if she doesn't get them she has a place, it starts half an hour after school drop off too. They share sen provision with the school next door so it's good, plus the just seemed nice and normal.
Real up turn, I get the impression a place there wil be a key for provision. Just the fact they already offered to phone up for provision and support on first meet speaks volumes
Sorry to answer questions after my excitement, every service here is integrated in one stand alone health centre. Salt, portage, audiology, epilepsy... The lot. They still don't communicate even though they share a building. So being discharged from the cdt covers portage... The lot. Same people
Glad you had a positive day and some positive news
As for the eprest, it sounds shit, sorry I know that's not helpful but it's shocking.
I feel like simply saying sod it to them and withdrawing consent completely, I'm still annoyed!
It follows dd, yet it's useless, every time I encounter someone new as it's all linked yet it's done zero for her. The journey so far is unbelievable:
-audiology "she needs SLT" -hearing aid fitted too, fluctuating loss (? she finds tests difficult to understand)
-com/ hospital pead x 3 "she needs SLT....and possibly absence seizures/ atypical absence seizures"
-SLT x3 face to face, x4 calls "let me take your number, I'll call you back"
-HV: "she needs support in motor skills, SLT"
-com paed x 2 "her development is normal, but she needs SLT/ ENT (e.g. speech assessed 12months at 24 months old, yet despite not being able to crawl up stairs and falling over a lot/ being unsteady her motor skills are 24 months "
-hospital paed x 2 "hemiplegia, motor delay, speech delay and her reflexes are slow on one side, brisk on the other with some rigidity" (whatever that means, com paed disagreed with them both cos if you can use a pencil in one hand then you're normal....)
-physio "she has right side-weakness, two finger reduced movement...not a concern, go soft play"
as it stands:
-SLT awaiting (for 18 months and counting)
-planned overnight eeg at gt ormond st (even though hour one normal???) none has spoken to me! I just get them in the post afterwards. Why would I consent when I don't even know if it's a clerical area or an urgent need?
-hospital paed not discharged, com has and they disagree. Services based with community paed , weird overlap both looking at same reports.
-awaiting referral to epilepsy clinic (I don't think she is), also within child development centre/ team (this confuses me if discharged... but apparently so)
The whole 18 month ride, masses of assessments from pillar to post with zero actual impact or support makes me think it's a pure case of arse and elbow syndrome (as in don't know) and it's feeling in the dark.
I'm thinking a flat withdrawal of consent (there's one form for each service in my new borough) is a route to ending the madness and worry. I'm not sure I was worried until I bumped into the hv! I didn't request anything, it snowballed, worried me, then ultimately proved useless.
I don't even know sometimes who she is referred to, I've suddenly had parent supporters/ nurses/ services ring up out the blue before when I didn't even know her details were shared! The only universal thing is they assess, identify need, refer and disappear. The first time I signed the form I honestly truly thought it was a physio form, I rung up confused to find out a panel of people had referred dd to a nurse/ paed/ physio/ OT/ SALT and audiology without me even knowing that was possible. I cancelled a few because DD was seeing them elsewhere (previous borough hospital)
1. Speech help. A good preschool/ private I think is the way forward
2. Time to grow and progress in a good preschool (I've found one) before worrying any more
3. ENT, separate hospital and not linked in
Normality and to enjoy my child without always waiting for a report/ meeting/ something that never happens but causes a lot of stress when suggested.
Sorry that was such a long long rant, but it felt good. I think disengagement, unless difficulties emerge at preschool, is the best way. Or I'll go mad.
Sorry, I may sound a little flappy re-reading that.
My sister has LD/ poss asd/ hearing loss and I've had a rough time with her, she's much younger and a lot fell to me. They look alike, seem so similar that it's a fear of mine. DS had poor support, worse than none, then followed with years of vulnerability (sexually in particular), mental health, suicide bids, housing issues and general hell. They are both very pretty petite things, and I sometimes feel like I'm on deja vu experience... even though they have differences.
It's not incoherent. It's clearly been a difficult ride and yiur sound, rightly, frustrated.
Can you arrange for a private physio appointment? These are usually reasonably priced (around 40-70 for 45 minutes). It may help to have someone who isn't involved in all the to ing and fro ing and reading and disagreeing of reports to have a fresh pair on eyes on the situation.
I did this with DS and things that had been mentioned, ruled out, questioned, discussed as possibly relevant with my DS were either not noticed or in the case of the important things - picked up immediately as significant and affecting his daily functioning.
I then took this report back to his pead.
The thing is I have taken to the community paed already another paed report from hospital detailing weakness and brisk reflexes, as well as a physio report but they then stated in theirs the problem was 'completely resolved'. It's a very narrow test using the schedule of growing skills, e.g. at 18 months they scribble with a pencil, so a child with one arm would be recorded as not having any gross motor differences wouldn't they...
DD to be fair isn't that bad, operates pretty well but clumsy. Will misjudge doors and run into them, fall over standing still, runs with one stiff arm and one waving but functions pretty well in general. More odd than an actual difficulty.
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