feel lost as to what to do next

[spidermanspiderman]

My 4 year old ds's preschool tentatively approached me back in October advising that they had some concerns over my ds. They made some written observations and took some photos of him where you can see he has difficulty standing, sitting etc. to take to the gp. Did tthis and was revered to comm paed. After a month of waiting anxiously received a letter advising received referal and then nothing. In the end called up and enquired as to situation and that afternoon got a phone call offering an appointment for begin of Jan.

Attended appointment and advised next step would be blood tests to rule out things such as muscular dystrophy - which we hadn't even considered and then would see us again in about 4 months time. Discussed sons behaviour and she checked his flexibility etc and watched him run. Because he was a little bit giddy fell over 3 times just running from one side of the office to the other. To be honest we believe he may have dyspraxia and possible aspergers. Anyway phoned up centre where bloods to be done as were advised would be about a month before were done and three weeks had passed and no appointment received only to be advised nothing received. Called comm paed Secretary only to be advised that no notes had been passed to them yet from paed and that they will look into it.

Paed also mentioned parent partnership who we contacted and who advised us to request preschool to contact educational service for physical disabilities. They have since done this. But...... Feel completely lost as to what we can do ds is due to start school in september and all anyone has done is go yep there's definitely something wrong but we're not going to tell you anything and will just leave you guessing as to what to do.

Thinking about maybe contacting therapy in praxis for a private assessment just so I know something, only thing putting me off is that parent partnership advised that lea will not recognise any private assessment and therefore they do not recommend doing. Ds appears to have various coping methods of his own in place at moment and preschool are very good with him so is keeping up with his peers at present but well aware that will not probably cope in school.

Sorry for long story,any advice appreciated

Did anyone from the education support service (physical difficulties) get back to you? If not that's one of the threads I would follow up, by finding their number online and ringing to speak to the team leader or even the area education officer if no-one else will talk to you. They should at least send a pre-school support teacher/adviser out to see him and rule in/out that he has needs which may need extra support at school.
Hope that is helpful.

Thank you for replying. Have contacted educational service for physical disabilities and they have confirmed receipt of referal. They have advised us that they will only be looking to see if he requires any specialist equipment that they would need to loan the preschool to assist him.

Feel really bad as we just thought a lot of things he did were just his own little idiosyncrasies and that some behaviours were instigated by birth of dd who was v poorly.

Don't feel bad, it may be that he has idiosyncrasies mixed with bits which do need looking at and as as you're with him all the time it can become hard to spot the difference.
I have reread yr first post and would also request a follow-up appt with the comm.paed if it were me.
I think if ed service did feel anything was necessary to lend out they should jolly well habv discussion with you about the nature of the problem as they see it and how you can get support and advice as a family. It's not just btwn them and pre-school.

Yay, go back to community paed secretary. why would the paed secretary be waiting for notes from the paed? Is this for further referrals?

Ask for another appointment ASAP and ask for referral to physio and it services whilst you are waiting for the referrals to rule out specifics. Who were you being referred to for bloods etc? Find out and contact them directly to find out delay.

Realistically, waiting lists are infuriatingly long and ridiculous, and 3 or 4 months here or there is pretty usual, but I've paed sec's are usually on the ball and would have been able to tell you by now which referrals had been done, and give you the contact details so that you can chase them. (calling the paed sec in tears can be an excellent motivator to improve information sharing)

Dyspraxia sounds eminently possible.

When does the 4 month appt to go back to the paed fall? Presumably they made this appointment when you left last time? Time to start getting a bit feisty.

Thank you so much for your replies. The whole system here seems pretty farce like. We have not actually got any appointments through as yet. The times of approx one month till bloods and will see you again in approx 4 months are the times advised by paed in our one and only appt. Just cannot believe the whole system is so mismanaged. Basically no referrals have been made for ds as yet. My husband did lie and say to the paed Secretary that the children's centre where his bloods to be done have advised them to mark the request as urgent. What they actually advised was that as developmental problems that from date of actual receipt of referral there is an 8 week waiting list. Also have to get bloods done there or at the hospital 15 miles away and cannot be done at the gp or local hosp.

Just feel like all we are doing is banging our heads against a brick wall. Thought at start that hopefully would get everthing sorted before he started school but that seems less and less likely. On the positive side he is the most gorgeous loving little boy and feel blessed that he is ours.

Does his preschool have an area senco that they can speak to. They should have, our area senco is able to get the ball rolling as far as school goes. She can observe children and tell us where to refer them to.

While you are trying to sort out the paed, i would go back to preschool and ask them to refer him to.

Sorry to hear you are being messed about but dont give up. Sadly it is often those who shout loudest that get heard in the NHS. I rang our paeds secretary every week when they were messing us about and did in the end get an appointment for Dd3 with a different paed, i think it was just to shut me up but she was fab and helped us a lot.

Good luck.

Thanks will get hubbie to speak to preschool next week. I am always pestering them for something, it's his turn lol.

agree with outofbody, unfortunately sounds like you will have to chase everything, and in particular the 4 months review, to make sure that 4 months doesn't drift by and no appointment sent out! sorry you are having such a palaver getting bloods done. oh and if you havent been copied into letter that paed sent to GP after the appointment ask for a copy of that, to get more idea as to what is meant to be being arranged etc.

Did not know that GP would get a letter, that's fab though as have a really good GP. Thank you for all your advice.

Area senco is sometimes called area inco (inclusion officer) depending on where you are. They are really only useful for Ed matters (so can refer to lea ot or Ed psych) but pretty useless as far as health goes. If they get involved with health you will still end up being the go-between.

On a happier note, the first bit is always the most difficult. Once you are in the system and known to the different agencies, it gets a lot easier. Referrals and waiting lists to get into the system are always the worst bit.

On an unhappier note, an 8 week waiting list is actually pretty good. Often kids are waiting 6 mos or more just for assessment to seeif they do need intervention.

And if he needs something like Pedro boots for stability, by the time he gets them, quite often he will have grown out of them. It isn't that the system is mismanaged, just that there are literally sooooooo many kids in it, and not enough therapists or money to provide more.

So when is your 4month appt with paed?

Flaming autocorrect. Piedro.