Preparing for mainstream education.

[dekra]

I registered my son for primary school last month and he is due to start in August. There has been discussion of holding him back a year but that decision will be made closer to the time with his dad and I having final say. I am against doing it unless I can see firm proof he will benefit from it. I believe he should start school with his peers and be given additional support to aid his adaption to school life. I am however not ruling it out completely and will review the situation in the summer.

 

In the meanwhile I have been in discussion with the deputy headmaster of his school. He says from what I have told him about Finn's issues they will apply for additional support hours to the council and hopefully be awarded time for additional staffing. His class already has their primary teacher plus a fully trained nursery nurse in primary one to aid the transition of all the children. Combine that with his attending his language workshops for 2 afternoons per week (possibly increasing to the maximum of 4 next year) then I hope there is enough support in place for him. He says there are 4 stages for support for children with 4 being the stage where children need a special school placement, He thinks from the sound of things Finn will be regarded as stage 3. so hopefully it won't be too difficult for them to be awarded staff hours for additional support.

 

He returns to the paediatrican next month for a follow up assessment to see how he has developed in the 6/7 months since his assessment in Aug last year. He will have been at the language workshop for some time and they will have a lot of imput in the reports. I am concerned however as they constantly try to reassure me they do not believe Finn is autistic but their arguements infact make me more convinced. Firstly they say he wants to communicate he's just unable to do so well because of his speech disorder. My argument to this is whilst the speech disorder in itself does not automatically mean ASD it also does not mean his wanting to communucate means he isn't. At the end of the day he is unable to communicate effectively. Secondly they have been into his nursery and when the staff there mentioned that somedays he is very very affectionate with both staff and other children the SALT says that also means he is not ASD. I'm sorry but he's overly affectionate at times, the other children find it very distressing when he is in that mood. I would say therefore instead of a them saying he doesn't lack the ability to convey affection so isn't ASD, I see it that he is unable to convey this in an appropriate manner, similar to a small toddler. Over the last few months whilst Finn's speech is coming on very well it is still exceedingly behind in both his vocalisation and comprehension however he does talk a lot - to anyone. He will tell anyone you talk to his name, checkout operators and store staff you ask a question of are frequently bombarded with his constant giving his name which as it's very fast and not clear they either ignore or don't understand. He gets very frustrated and distressed when they don't repeat his name back to him. Yesterday he did this to the lady sitting on the bench in the shopping centre next to them when they stopped for icecream and then gave her a huge hug. He has no comprehension this is not appropriate and doesn't understand if you try to explain to him.

 

We have now settled into our new home and his sleep pattern has improved in some ways and gotten worse in other ways. He does not have as many incidences of waking upset (our new neighbours are nice and quiet so I'd say the incidences of this have halved). That does still leave a lot of waking mind you. Other nights we are getting more and more instances of his not sleeping at all until 4 or 5am. He goes to bed at 8pm if not earlier but will lie awake for hours. When I am getting him out of bed at 6.15 so I can start at hospital at 7.30 this is torture for the poor soul. I have had to adjust my shifts in the short term but in the longer term I may have to leave uni for a while. He's been sleeping a lot at nursery but this can't go on as he will not be able to sleep daytime when he starts school. The exaustion he's been suffering has been extreme, when I am out with the kids now my daughter is in her buggy but Finn will stop and just lie down in the middle of a shop and refuse to move. We had the wee one out her buggy a few weeks ago and turned around and in the space of 2 mins flat Finn has climbed in the buggy and gone to sleep. I hate letting him sleep during the day however as when he wakes he is so distressed and seems to be taking more and more panic attacks. I just don't know what the best thing to do for him is. I am hoping the routine of fulltime school will help his sleep pattern as he will be occupied all day and not be able to sleep. If he is stimulated both physically and mentally then he will hopefully also become both physically and mentally tired and a better sleep pattern develop.

 

Nursery have also noticed that some days depending again on his mood all they get is echolalia even though they know he is capable of more now. I'd say that his speech has developed so that 20% of his speech is independent now with basic sentences now appearing. The rest of his speech is still either just jargonistic, echolalia or learnt phrases (mostly from TV).

 

What would you guys recommend? Do you think I am being unrealistic wanting him to start school ontime with support or do you think they extra year would actually be of productive benefit? I think intellectually he needs the stimulation of school and his nursery think he needs the structure to his day that school would be able to give where they are not in the position to do so.

Edited February 5, 2012 by dekra

[justine1]

Hi

 

Sam started school "on time" and I regret it. His birthday is at the end of august so he just turned 4 at the time he started. He did not cope very well at all and he did not have a diagnosis so no hope of getting help. Saying all that I think the way things have worked out have benefitted him though,because he struggled so much the statement process was that much quicker and the need for him to be in an ASD class was very obvious. I also think from a social aspect it has helped him, saying that in your case your son already has this at nursery so it is not that much different.

 

The only thing I would say is get anything/everything in writing from the school before he starts. They are not legally obligated to provide any support at all unless he has a statement,while they can do so out of their own budget I would just be wary as to what they have promised.

[dekra]

Finn will be 2 weeks past his 5th birthday if he starts on time but will be over 6 if he is held back. I don't have a problem with the support services in place so far and that will be going to be in place when school starts - I am in Scotland so there is not a statement but there is a legal doc that is set up and this will be done at a meeting with various members of the multidisciplinary team in May. My main concern is the seeming lackof knowledge of the depth of manefestations of ASD behaviour in the SALT team and this negatively influencing the drs during the diagnostic process. I have spoke to Scottish Autism however and various other people I know with experience of ASD in both children and adults and they all agree SALT are not showing great knowledge of ASD. I am however hoping that after talking to people I have the confidence in my argument to put to the paediatricians and they ought to be knowledgeable enough in ASD to listen.

[justine1]

I am sure he will be fine given the age he will be when starting school. My eldest son turned 5 about 6 weeks after starting school and he is very bright academically. The fact Finn will be at nursery until that point will help as well. You could start preparing him now for school,showing him where it is,the route you will take,maybe make a book with pictures possibly with pics of the class and teacher if school will help with that.

 

They usually have intro days before they start school anyway and may only put him part time if you feel this will help him. That is ashame about the SALT,do you think you could look into private SALT?

[dekra]

I am certainly looking into private options but other than their bullheadedness about his dx I don't generally have an issue with the help SALT are providing. The school know that Finn is at a private nursery rather than the council ran one that is attached to the school and they are making a point of liasing with the nursery regarding introduction/induction sessions they have over the next few months so again I am pleased with the response I have had from them. With the SALT workshop he currently goes to2 afternoons a week which are likely to increase to 4 afternoons by school time he will only be in part time anyway. I am not concerned about his coping with the physical integration into school life - in that respect he does not have the usual ASD issues with routine, in fact he has always been quite easy-oosy regarding routine changes, although this may just manefest in different ways (eg, some changes can trigger an increase in his sleep distrubances).

[dekra]

Just found out today that the first meeting with SALT/EduPsy/HV/Primary school rep/Nursery Teacher and ourselves is next Thursday. I knew nothing about it. When we moved home in December I let the council know so his transport for his language workshops could be amended and I assumed they would tell the actual language resource et al but it seems they didn't get the info and still had my old address. Luckily I now know in time and we can arrange time off uni/work to attend. This is not connected with a dx and is purely to look at his educational needs and development and to start to work towards a plan of action for support also the case for holding him back a year will be presented is they feel it is needed however that decision is down to myself and hubby.

[dekra]

Prescat meeting today, I am nervous. Attending will be myself, the hv, SALT, edu psy, nursery key worker and deputy head from the primary school he is due to start - that I know of that is, there maybe more that I don't know about yet. The point of the meeting is to determine his readiness for school and the support he will require. Our area are good in that they don't require a dx to put provision in place so the dx saga doesn't come into todays discussion. What does worry me is them recommending deferring his entry to school. At the end of the day I get the final say but I worry if I go against advice and he doesn't cope then it will be my fault. I so truely believe however that with appropriate provision for support then school at 5 is the best path.

 

 

I think the best thing I can do is go with an open mind but to be an advocate for my son and his needs and best interests and make sure the provision agreed to will meet his needs. Up here in Scotland we don't have a statement but the provision agreed will be in some form of legally binding agreement, I need more info on the ins and outs of that I think!

Edited February 23, 2012 by dekra

[justine1]

Hi Dekra

 

How did the meeting go?

[dekra]

It went ok Justine thanks

 

The discussions were about getting Finn supported through the transition to P1.

 

http://www.asd-forum.org.uk/forum/index.php?/topic/27837-derbyshire-language-scheme/

 

That thread has the details of everything discussed but at the moment I'm fairly happy with things, just waiting on next paeds appt to arrive which should be for late march.