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delay...how to prove it?

Posted: Mon Feb 25, 2013 9:17 pm
by miraclemummy
my daughter has a respiratory condition. aside from that i am positive she is behind developmentally, enough to warrent extra help. at 2 years 6 months she has only just learnt to walk down the stairs 3 weeks ago and walk up them a couple of days ago. intelectually we also have a problem, it takes a few attempts to get her to do something as we have to tell her possible 3 times in a row. she doesnt understand alot more than i thought she would at this age. i have worked in a couple of nurseries and have never ome across a child at this age, behind as she is. her talking isnt the greatest, but we have speech therapy (for feeding difficulties) and she feels she is ok. she doesnt understand the concept of shape or colour has no idea what to do with a shape sorter. she likes to play alone, she wont even allow me to play with her sometimes. she prefers most days to still and watch films. in that way she is clever, she knows what dvd is what and she knows that the one she picks is the one she wants to watch. over the past year i have had A LOT of issues proving my concerns to her doctors, most go unheard. as you can imagine i am feeling very anxious about her upcoming general review at the hospital as i am planing to raise this delay concern with her doctor. i dont even know where to start? Image

Re: delay...how to prove it?

Posted: Thu Feb 28, 2013 5:41 am
by charles47
Speech therapists often will not discuss issues that they see as outside their remit. That could be what is happening here.

I'd suggest writing down a list of your observations, similar to what you've told us. Does your partner agree? If so, get your partner to back you up. Even in this day and age, there are idiots out there who won't listen to mums if they themselves can't see the problem immediately.

Certainly what you're describing reads to me that there is an issue that needs to be looked at and I would recommend you go to your GP and ask for a referral to see a paediatrician. But get the list of concerns written up first - it's easier to go through a written list than to try to remember everything and be coherent about it. You'll sound less anxious, and that will help to make sure you're listened to with some respect.

Re: delay...how to prove it?

Posted: Wed Mar 06, 2013 10:57 pm
by miraclemummy
Thanks for your reply. I am not with my daughters father but I live with my mum and she agrees on the issues with delay. We Hve the appointment tomorrow so I will sketch down the ideas that we have about it. We have -since posting this question- had a family friend round and she has sat with my daughter played etc. she has a son who has dyspraxia and she said my daughter has similar traits, so this is our main concern we are going to bring up tomorro. Thankyou So much for your advice though! I would have never thought of that Image

Re: delay...how to prove it?

Posted: Thu Mar 07, 2013 4:30 am
by charles47
Hope it goes well!

Re: delay...how to prove it?

Posted: Thu Mar 07, 2013 6:50 am
by bowlingbun
I was in a similar position to you many years ago. It is absolutely vital that your daughter has a full assessment as soon as possible. The earlier services are arranged to help her, the better she will be. Don't let your GP put things off. It might also be worth ringing the Education Department, many have services for pre school children, but it's difficult to be specific as each area seems to arrange these things slightly differently.

Re: delay...how to prove it?

Posted: Sat Mar 09, 2013 3:42 pm
by miraclemummy
thankyou bowling bun!!! the appointment went really well! as it was a general review with her paed he always asks how shes doing. unfortunalty ( and shamefully) because of previously been shot down when i raise concerns i didnt have the confidence to do so. my mum however brought all the issues up. he listened to everyone and said she is doing somethings that you would expect for her age but he also noticed what we were on about. like when we said we were concerned about her speech. theres no doubt she has plenty of words but some she doesnt quite pronounce right and she doesnt use 'english words' alot its normally baby talk. when we brought this up with her Speech therapist she felt she was doing fine, because, true to form she spoke normally. however at the review with her paed she didnt say any normal words, she just babbled. he also watched her running up and down the corridor and saw she was wobbly. sooooo!!! we have or will be getting a referral for Occupational therapy and physical therapy. i was so glad! and tbh i dont have any doubts in my mind anymore that i might be wrong. i was at the gp with her last night and sat in the waiting room it seemed like i had a hyper 1year old on my knee not a 2 and half year old! after that i knew something is definitely wrong. so she will be assessed just in time for starting nursery! im hoping they will statement her too! he said it is better to get it done sooner so it is more an intervention than a treatment Image

Re: delay...how to prove it?

Posted: Sat Mar 09, 2013 4:15 pm
by bowlingbun
Excellent news. When you see the people who are going to help your daughter, be sure to ask them what you can go between visits to them. My son (now 33) was finally diagnosed with dyspraxia at 8 years old, his lip and tongue muscles were not co ordinating properly. We were told that licking things was really good, so he had to lick his gravy off his plate after a meal (which we turned into a "naughty treat") and we were to encourage him to have ice creams which needed licking. Just these two simple things helped him a lot. However, as he got older, he got tired of doing speech therapy, I think, looking back he didn't like her special room. As much as possible, try to integrate what you know your daughter needs to do into her normal life, so she just thinks it's a fun thing to do, rather than "therapy".

Re: delay...how to prove it?

Posted: Tue Mar 19, 2013 8:15 am
by ALR
Bowlingbun is absolutely spot on.

Like Bowlingbun I too have a Dyspraxic son, among many other problems he has Dyspraxia is one of the things he's really struggled with.

When you say you have to repeat things to your daughter, this is one of the things with Dyspraxia or other conditions.

Can you imagine an old fashioned telephone exchange? where people used to have to plug in the wires to send the messages to the right line? Imagine a person in charge of the wires who gets confused and plugs the wires into the wrong holes. This is what it is like for someone with Dyspraxia. Sometimes they hear what you say, they can repeat what you say but somewhere in transmission it gets lost.

I used to work in Education but spent a lot of time trying to "teach" teachers about Dyspraxia and other specific learning conditions or problems. Teachers would get annoyed with the child who was always falling off their chair etc. I would try and highlight to the teacher why the child was falling off the chair etc and try and give the teachers strategies to help the child.

As you say your child is about 2 years 6 months, you may find that professionals are reluctant to actually make a diagnosis as yet which can be really frustrating for you. Licking is an excellent idea from Bowlingbun. It really helps. You may also find mimicking instruments helpful for your child. They listen to the sound of a drum or a tambourine for instance and try to copy the sounds. When you are encouraging her to say words, imitate a drum for instance and tap saying, d, d, d, d, d, d, drum.

A salt/sand tray can help but it depends whether your child has any sensory processing issues. Some children really enjoy the texture on their hands and others will avoid it like the plague. If your child will tolerate the sand/salt draw pictures and make sounds. Then transfer these pictures and sounds by tracing the sounds and pictures onto the palm of your child's hand or onto their back.

A soft squeezy ball in the palm or their hand may help them too. As a comforter, to roll and to squeeze. This may all sound rather silly to you, but these things do work when you are talking to your child and she has to concentrate for a period of time if she's holding the ball, it helps. As she gets older, you could sit her on the bed or a trampoline and gently push the bed up and down. Make a little game of it where she has to balance as you push the bed and rock it gently and increase the pressure. Talk or sing and make a game of it. This will help strengthen her core stability whilst encouraging one to one concentration time that is fun but helpful at the same time. There are lots of games and things you can do at home that will really benefit her. Some children enjoy playing with balloons but you may find others are terrified of them so it's a matter of what your child's feelings are. If she is sent for OT or physio they may do group therapy sessions.

You may find she is referred to orthotics to help with insoles or special shoes to help aid balance.

You have to push for all the help you can get. It sounds like you have your Mum on your side and that always helps.

Good luck Image

Re: delay...how to prove it?

Posted: Tue Mar 19, 2013 12:44 pm
by bowlingbun
ALR, I can identify with so much of that, just wish the advice had been around when M. was little! You've reminded me of taking M. shopping, complete and utter nightmare, chained into his pushchair so he couldn't get out and run around at breakneck speed, he would complain, very loudly. However, someone gave him a little shopping bag, and if he had something in his bag we found he was much calmer, because he was helping with the shopping. As he became older he would still "disappear" in a supermarket but then return with things he knew we needed (Weetabix for example). He actually has a brilliant memory, once we realised this it was very useful. I used to do lots of cooking, M. liked standing on a chair controlling the Kenwood Chef, under supervision. Once I'd used up most of the pastry I'd leave a bit for him. Armed with his pint sized rolling pin and some little cutters he spent ages doing pastry work, he liked the texture. Very much like plasticine but with the added advantage of being able to eat it afterwards! The other thing he liked doing was the washing up - well not the real stuff, just his unbreakable stuff. He just loved having lots of bubbles in the washing up bowl, cleaning the sink etc. etc. wearing a little waterproof apron. My grandson will soon be a year old, so it won't be long before I have a little helper in the kitchen once more!

Re: delay...how to prove it?

Posted: Tue Mar 19, 2013 5:18 pm
by ALR
I hear you loud and clear Bowlingbun. Especially with the shopping. My son was nicknamed Houdini as he could escape from anything but wasn't too steady on his feet. He used to have "to have a book" Whilst he's dyslexic and struggles to read he loved to go shopping and buy books from the supermarket. The only thing is he used to chew them. As he got older he too would like to help with the shopping.

You've took me back with the bubbles too. He hated the texture of soap on his hands and we tried many different types. The only way we could get him to use the soap was to blow bubbles with the soap in our hands.

Getting him in the bath was a nightmare but once in we couldn't get him out again but once the fingers crinkled. Oh my!

We used to do lots of baking. We still do. Very good for the fine motor and gross motor control. Now my grandson loves baking and I have a pretty good inkling how much fun you're going to have with your little grandson too.

What I used to do, to convey to fellow staff members what it was like for children like ours living with Dyspraxia or special needs etc was encourage them to copy the Greek alphabet from the board with their non-dominant hand, whilst sat on a space hopper with their legs crossed without putting their feet on the ground....It's amazing how this got through to them. I used to get so annoyed if we had anyone in school on supply and they pulled up a child for sloppy handwriting etc if they were one of my SEN children.....I'd also get the staff in the staffroom to put on their coat back to front, button it up and put on a pair of gloves and try and open a packet of crisps or starburst etc....It was only by doing this that you could sometimes convey to the staff that a lot of the SEN children weren't naughty they just didn't have the same sensitivity or processing skills that the average child may have.

I could wax lyrical all day about activities etc for children/people with Dyspraxia or Special Needs. Afraid its a bit of a bug bear with me that people don't realise how difficult it is for people with this condition.