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Sorry for 2nd thread. I'm so confused, please help

9 replies

WeAreSix · 18/03/2013 21:14

This will be long...

Please can I tell you about DD? I have no idea what to do to help her or if I'm totally overreacting and actually nothing needs to be done. I will start right from the beginning, and include everything including info which may / may not be relevant.

Someone must know what to do, I'm failing as her mother. I don't know how to move the situation forward and my head is spinning with all the different professionals and all the different types of SEN.

So, DD is 3rd of 4 girls. She is now 5. She vocalised normally as a baby, no cause for concern. However - I bought a parent facing buggy at 8 months, and had said to my DM that I was worried that I was only teaching her how to love and laugh. DD had failed the newborn hearing test but was given the all clear by audiology.

DD was slow to walk. She would walk holding fingers for ages and finally was independent about 6 weeks before her second birthday. A few days before she turned 2, she tripped and fractured her lower leg. It was badly managed by the hospital; she was in a back slab cast for 4 weeks which she wouldn't weight bear on, out of cast for a week and then re-cast for 6 weeks in a proper plaster as she still wasn't walking.

Shortly after the second cast was taken off she had her 2 year check, which highlighted problems. Mainly her speech and language was delayed, but she also didn't play as the HV would expect. The examples of this were taking a long time to do as asked (brush dolly's hair) and then not willing to move on to next task. I wasn't so worried about that at the time; her leg was still uncomfortable, the clinic setting was unfamiliar and I thought she was just being uncooperative.

We were referred to SALT. They wanted her in a nursery placement ASAP; my plan had been to wait until she was 4 and go to the LEA nursery attached to first school as her big sister had. I reluctantly agreed, voicing concern that it was too early and she wouldn't cope. I withdrew her (against advice by SALT) after 2 weeks. She had stopped talking almost entirely, had regressed into soiling knickers when she had been clean / dry for several weeks and became increasingly clingy.

Another hearing test was normal.

We carried on with SALT sessions, which were 6 week blocks. I spent a small fortune on SALT resources to have at home - flash cards, picture cards etc etc. we saw Development Paed (another horrible clinic setting - almost impossible to assess DD as she would only sit on my lap, would not complete tasks as requested even with massive prompting and support from me). They acknowledged that receptive and expressive speech and language were delayed. They mentioned global development delay, but felt this needed further assessment and reviewed once in the nursery of my choice. At this point, referral to Educational Psychologist was mentioned with a view to applying for a Statement for starting reception.

DD was seen by OT at home, who had no concerns. DD completed all tasks requested - but was never able to build a bridge with building blocks, always built a tower. I voiced my concerns about DD reacting negatively to loud noises (she was terrified of fireworks, other children shouting, unexpected noise) and would cover her ears when scared. She was (and still is) terrified of people dressed up as characters, loud noises etc. anything like a carnival is an absolute no for DD she spends the whole time buried in my coat, shaking with fear.

She started the LEA nursery, aged 4, and I expected huge problems with separation anxiety. She surprised us all and settled within 3 mornings, loved going. I never once had to leave her crying.

We were seen by Paeds again while at nursery. I was expecting to go to clinic and start the process for statement, but no. As DD was doing so well at nursery and the OT report was good she was discharged from Child Development team to SALT and nursery only, with School Action Plus. I was shocked, but hopeful.

SALT continued up until July last year, prior to starting reception. I never felt DD gained much from the sessions, they were too few and far between. She was then discharged to school care.

I had a baby last year, so then had contact with a different and very good HV. I voiced concerns again and said I thought DD couldn't hear me. We were referred back to audiology, another hearing test and this time I showed mild hearing loss. We saw ENT in October; yes DD does have hearing loss due to middle ear effusion (glue ear has not been mentioned), we can either have hearing aids or grommets. We've decided to have hearing aids to start with.

School continue with ILP and she's on School Action Plus. DDs speech and language is still a problem, although she is better than she was. She talks in one or two word sentences, misses virtually all connectives. She cannot repeat a sentence unless you get her to do it word by word. She is beginning to be able to dress herself. She seems to have made a few friends at school, but friendships seem to be limited by her speech. She goes to a gymnastics club, but she has been assigned a buddy (an older gymnast) to stay with her as she needs 1-to-1 support as she cannot remember (understand?) a sequence of moves.

Mornings are an absolute nightmare. Getting her ready for school is more like a 2 year old tantrumming than a 5 year old. Hard, hard work. She plays the same game after school every afternoon, and gets very distressed if the pens / pencils / books she needs to play the teacher aren't where they were left.

She is beginning to learn phonics. Individual letter sounds are good, but she struggles to blend. If she manages to read one word in a book, she cannot recall that word on the next page. Each word is sounded out letter by letter, each time it comes up. She can count up to 20, but that is the limit of her numeracy.

Sorry this is so massively long. It has helped writing it out, and I'm going to print this for our next appointments this week (audiology and SENCo).

Does anyone recognise any of this? Who do I need to go to with all of this for help? Do you think I am making a mountain out of a molehill?

Thank you so much if you have read this far.

OP posts:
PolterGoose · 18/03/2013 21:32

This reply has been deleted

Message withdrawn at poster's request.

WeAreSix · 18/03/2013 21:40

Thank you poltergoose

Diary is a very good idea. I might try some covert videoing - that's another thing she can be very uncooperative with. We don't have many photos of DD, she hates cameras.

OP posts:
Handywoman · 18/03/2013 22:23

You are not making a mountain out of a molehill. In addition to the above advice can I suggest a re-referral back to Developmental Paeds? We did this, after being discharged after coping well in reception. School re referred, but your GP can do this too. We also had hearing aids to help with language delay and mild/moderate conductive hearing loss. They helped my dd get the most out of classroom learning and SaLT. Digital hearing aids are amazing as they amplify speech sounds most and are tailored to the individual audio gram -very clever. It does sound as though the SaLT needs to be stepped up as her language sounds quite markedly delayed. Good luck and stick around, this place is a mine if help and wisdom.

Handywoman · 18/03/2013 22:28

I would also suggest if you can beg, borrow or steal, assessment from a good private SaLT and if you can beg, borrow or steal even more - therapy with private SaLT. Of course not everyone is in a position to do so but it is the single most effective thing I have done for my dd2 (now 8yo) and worth every penny. Your dd's language issues seem worthy of thorough investigation (not normally always available on the NHS).

zzzzz · 18/03/2013 22:55

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Message withdrawn at poster's request.

MyAngelChuckles · 18/03/2013 23:18

Your never making a mountain out of a mole hill if you have concerns about your child, it's always the right course to pursue assesments and avenues to open up the right help for your DD.

My DS(7) also has severe speech and language delay and had an 'intensive' therapy course in reception with 1 to 1 much like you describe, although he does not have hearing difficulties. He was discharged from developemental pead when he was in reception as they felt that he no longer needed to be monitered. I still worried though and had a meeting with the school and they agreed to refer back to developement pead. It's the best thing I could have done, he has very recently been diagnosed as having ASD and has a statement in place.

Record all of your concerns, I kept a pad and pen handy so when I thougt of something I could write it down and not forget it til later and either ask at your meeting with SENCo or go to your GP for a re-referal to developemental pead to get the ball rolling as waiting lists are long.

Good luck Smile

chocjunkie · 19/03/2013 03:05

do you think your DD has the right support at school?

i would seriously think about applying for a statement myself. IPSEA have a model letter here.

WeAreSix · 19/03/2013 06:35

That link is really helpful, thank you choc

I'm preparing myself to face yet another morning of battling to get her up, washed and dressed. Although, she's just said "it not morning time! It bed time! Light off!" So I think I should probably praise her for good words Grin

OP posts:
Handywoman · 19/03/2013 07:19

Ah bless her, yes that's good! Good luck x

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