Supporting Parents With Sen Child Acceptance

[Guest]

I have posted before about a child who had certain behaviours that concerned us. He joined us just over a year ago and although he has progressed, is still well behind compared with his peers.

 

Since my initial post he has been seen by our area SENCo numerous times, by the Health Visitor at home and in our setting, by the Speech Therapist in the clinic and with us and is due for an appointment with the Paediatrician.

 

I think we are well on the way to getting him support i.e. a Statement for when he starts school in September as the fact that he needs some help has been agreed by everyone so far.

 

However, although his parents seem to have been on board at every stage, they now seem to be questioning, it seems that his Dad was very like him at a young age, couldn't concentrate, didn't get good results at primary, wasn't coordinated etc.

 

We think it is a slight denial of what is happening (although child is a lot more violent than we have been told Dad was - need to check if he threw chairs about!) and a case of 'well dad is fine, has a job, a family etc'

 

Our main problem is that no-one is telling the family anything, and they (other professionals) are asking us not to either, however we are the people that the family see every day, we are the people that they want to show how well their child is doing, "he can hold a paintbrush nicely" (yes but with one in both hands) "he talks to everyone about everything" (only adults)

 

I know we are not 'qualified to diagnose' but the elements of Dyspraxia just shine through here. If his parents checked the website they would so see him (and probs his Dad!) I know I can't say this to them but I feel that I need to have a chat to explain why we have sought support due to his behaviour.

 

I just feel so much that I want to support this family, I want to talk to them, I want them to know why (and how) this lovely little boy needs support. And I am so cross that nobody else seems to be talking to them!

 

Rachel

[Guest]

Can someone also add this to a general pre-school/nursery behaviour forum if needed because the child involved is in a PVI committee run setting.

 

Thanks

 

Rachel

[Rea]

What reason do the others give for not telling the family whats going on? I find it quite bizaare that the family wouldnt be involved. You may not be qualified to diagnose exact conditions but you know him and his family well, and should be able to support them through what is a sad time, they are being told their child isnt perfect.

Maybe with more details of how the support will help him to achieve in all the areas he might ultimtley struggle with, would help mom and dad to understand and accept better.

[Guest]

It's very odd that the professionals aren't telling the family anything. Have you spoken directly to them? Are you sure this is not just what the family is saying and not the reality?

 

There may well be inherited elements with the child's SEN. Perhaps they are panicking a bit now you are near to getting a statement?

[Guest]

Thanks for your replies Rea and Suzie.

 

When the Speech Therapist came in on Monday we asked her what we should say to the mum (as she would ask) and she said "tell her I have observed him and will give her a call - hopefully before she picks him up today."

 

She left at 12, pick up was at one, the call wasn't made until the following day after I had left a message to ask them to call as the Mum was very anxious!

 

I think the reason that no-one is saying anything is because they haven't got the foggiest idea! Our Area SENCo said he is the most interesting child she has seen in 16 years of working in this area.

 

Anyway I had a long chat to the Mum this morning just to offer support and say if she wanted to ask anything, confirm anything she had been told, have anything explained, then she could. From what she said she seems to realise that there is something "wrong" with her child (her word not mine!) that support is necessary to help him, but also that he "will get there in the end" That we will have to see.

 

I have to admit if I didn't have another 7 key children and wasn't the supervisor I could happily study this child till the cows come home!

 

Rachel

[Rea]

I think I'd go with my own instincts and offer the support I knew was needed. Dont wait around for SENco and others to tell mom or you anything. Just use your professional judgement to start things off. And to do that, you might want to make some really detailed obs, so that should be fun.

[Upsy Daisy]

My younger daughter is currently going through the assessment process for an Austistic Spectrum Disorder and there are several professionals involved who have observed her and written reports contributing to the process.

 

I have been told that once the professionals have all the evidence they need they will meet to discuss her diagnosis. At this point they will offer advice and support specific to the condition they have diagnosed. Until then they don't feel that they can say very much. The school are feeling very much 'out of the loop' and are unhappy with having to wait but I understand the need to collate the evidence and make the right diagnosis first.

 

My guess is that this is what is happening in this little boy's case too.

 

I would make it clear to the family that you are noting all these positive bits of evidence along with your own obs and will share them when you are asked to.

[Guest]

We've had experience with a child who had lots of different things going on and in the end we supported the family by developing strategies to support the child with the various things he needed support with, without looking for a diagnosis. Several years on I still couldn't tell you if the family ever got one but the child has made huge progress. I'm sure you are doing this kind of thing, but would it help the family for now to say that the most important thing is strategies are put in place to support the child, and to help them focus on that rather than the diagnosis? The child in our setting did get a statement too.

[Guest]

Thanks again Rea,

 

Believe me we have more obs than I know what to do with! The behaviour is so inconsistant, yesterday was a good day, 10 paintings only one child pushed over. Today three children pushed over, screamed in the face of one because it wasn't his turn, screaming and crying because another child was painting when he wanted too. Thank goodness it's Friday

 

Rachel

[Guest]

Thanks Upsy Daisy,

 

I agree that without a diagnosis the information can't be given out. I have to admit the wait isn't easy and the school where he will go in September are also on our back at every turn.

 

There are positive things and these are shared, but of course for him to get the support that he needs we have to focus on the negatives too or he just won't get the support.

 

Rachel

[Guest]

Thanks Holly,

 

Absolutely, we have many strategies in place which have been advised by our Area SENCo but the trouble is the inconsistencies of behaviour, so sometimes they work sometimes they don't. This is why he is being assessed by so meny others now.

 

Rachel

[Guest]

Don't know if this will help with your thoughts but my foster son, aged 12 yrs has got a diagnosis, he has 'Global Development Delay' This diagnosis in itself is of no apparent use, it doesn't tell me anything because it is so vague, because it is such an individual diagnosis different for every single child who is given it. I struggled with this at first, wanting to know if he has any specific syndromes which would give us specific strategies to follow.

 

He has had this diagnosis since the age of about 3 yrs. He came to us aged 8 yrs ( 4 yrs ago), without a statement. This I got for him and he does attend a special school, having not progressed in mainstream.

 

Strategies for all his educational, health, social and emotional needs are a continuum of trial and error. Error only being in that a certain strategy may work one day but then not the next. It has taken me a very long time to just accept that he has good and not so good days, he can progress well, stand still, and sometimes regress. His comprehension and understanding can amaze one day and confuse the next. He has undergone every assessment you could think of, from occupational therapist, S & L, paediatric, x-rays to assess bone development ( which apparently can give clues to neurological development) and even genetic testing (many blood tests). His behaviours ( in terms of thinking processes as well as actions) could fit into many 'syndromes, labels, on some days, but then again be excluded on other days of linking to such labels . He can be very literal; then tell a joke; his emotional dialogue is inconsistent; screaming in pain at a slight touch and not flinching when stung on the face by a wasp. His sensory perception confusing. He can show profound empathy one day and show confused understanding of this emotions the next. It's like his various neural pathways can become lighter or darker like a dimmer switch light bulb. Not as simple as just on or off.

 

I could go on,.... but what is always consistent is his diagnosis; Global development delay. Now it's been given, it will stay. It really doesn't help though because whenever I ask what does it mean, there is no definitive answer. What does help is to just take each day as it comes, and take time to just let him be and for me and his family to enjoy his uniqueness. We have had 3 yrs of assessments, appointment, meetings etc, this last year however we have just accepted he is who he is whether he has a 'label' or not. And we continue to use and adapt every strategy in any book to enable him to feel happy, safe, secure and progress in all areas of his development.

 

What is refreshing, I think for him, is that since he started special school because he has this delay ( what does delay mean, he will catch up? what time scales fit with this term? ) the emphasis at school is on ALL areas of development, with lots of sensory, hands on experiences (mainly outdoors), a truly holistic approach. In 7 yrs of mainstream he left at age 11 yrs on P levels, within 1.5 years of special school he is now at NC Level 2 in Maths & English.

 

Sorry I digress.

 

One thing I can share is that when I got the statement report, even as a foster mother, only knowing my foster son for 2 years, I cried when I read the statement as severe, complex needs. Seeing this in black and white is hard, which may be just one of the fears your young boys parents are fervently wanting to avoid having to deal with.

 

Let us know how things go, and yes, I think be the listening ear to this boys parents but really, don't feel you always have to have any answers as in my experience even if you are given answers ( in terms of diagnosis), there are always more questions and never really a definitive answer.

Sometimes I think I would prefer an "I don't know" ( a recognition that even 'experts' don't know everything) than a term such as GDD that doesn't really mean anything concrete, and if we think about it, really, every child is unique and different from another, .

 

Peggy

[Gezabel]

a term such as GDD that doesn't really mean anything concrete, Peggy

 

Oh I couldn't agree more Peggy. Such a frustrating diagnosis and one I am not sure I really 'get'. We have a 3 yr old with (amongst other things) GDD. Of course I understand her development is delayed and it is delayed in all areas hence, I guess, the 'global' part. I understand too, how delayed the child is but what I don't understand and no one can tell me is how far the child's development will progress. To me 'delay' means something will happen just later than expected but how much later and how far will development progress I just don't know.

[Guest]

Oh I couldn't agree more Peggy. Such a frustrating diagnosis and one I am not sure I really 'get'. We have a 3 yr old with (amongst other things) GDD. Of course I understand her development is delayed and it is delayed in all areas hence, I guess, the 'global' part. I understand too, how delayed the child is but what I don't understand and no one can tell me is how far the child's development will progress. To me 'delay' means something will happen just later than expected but how much later and how far will development progress I just don't know.

 

 

Exactly, and actually once I stopped searching for answers and just concentrated on enabling my foster son to enjoy and make 'global progress' on a day to day basis, things got much easier.

As for my foster son, all he is ever interested in, is the present, and I have learned a lot from him in how to just live for the present. Maybe if ALL children, with disabilities or not had adults around them who's focus was on the present instead of 'progress for the future, be it for when they get to school, for next weeks assessment or end of year league tables or even further on in their life', then maybe ALL childrens day to day life would be as much fun as my foster sons.

 

Peggy