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WeeGreenDragon

Hi ... New Here and Looking for Advice

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Hi,

I'm new to the group and have a 4 year old son, Calum.
Calum has been referred to Speech & Language via nursery as they told us he "wasn't coping emotionally" (see below).
The Speech & Language Therapist has had a meeting with both Calum and I and also been out to observe him at nursery too.

At the follow-up meeting that my husband and I attended she said she thought it'd be worthwhile to refer him to the Community Paediatrician/Educational Psychologist for further assessment. When pressed she said she thought Calum is displaying signs of Aspergers.

Having looked into this myself I can now see this may be the case and I wondered if anyone would be able to give me some advice as to what happens next or if there are any things I ought to be doing to assist the assessment - should I be keeping a diary/make a list of behaviours Calum has etc?
Sorry for the rambling post. I just want to ensure my son gets all the help he can.

Pamela

 

 

 

 

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Hi Pamela and welcome to the forum :)

 

There are lots of parents here who have gone through what you are going through now, and they will be more than happy to help :)

 

There are lots of threads relating to this too if you want to have a look about!

 

Cheers

Matzo

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Hello, your post rang a lot of bells with me! Sounds like you're in the process with the professionals regarding Calum. Wherever the assessment road leads you, I would like to offer that this is first and foremost YOUR chance to find out lots of information and begin the important process of whether or not Aspergers fits what YOU know about your little boy. Then you can begin to really help him and also get the right professional guidance. Read lots but don't get overwhelmed! Filter out what doesn't fit. Think of it as the start of a new chapter in a book where you were previously missing the synopsis on the back!

 

With regards to a diary of behaviours, I found with my son (also aged 4 at the time and having trouble at nursery!), that when I started to look, I could see all the clues that had been there for so long.....a diary might help you to see the big picture but don't obsess! Also, you are doubtless looking at schools at the moment. It might be worth speaking to the school's Special Ed Needs coordinator (SENCO) for advice and to find out how the school can support Calum, whether or not he gets/needs a formal diagnosis. I wish you all the best as you move forward.

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Hi Pamela

 

Welcome to the forum. My little boy is 5 years old and is in P1 at a Special Needs school. He was diagnosed at just under 3 years old as having High Functioning Autism. Up until the diagnosis, he had attended toddler groups and then 2's group. He was due to go into mainstream playgroup at that point.

 

I flagged up my concerns, primarily about my son's speech, to the HV when my son was just under 2 years old. I actually had no concerns at all apart from this back then. Yes, my son refused to wear reins and lay and screamed on the ground if he was pressed to do so but I put this down to him being independent and stubborn, yes, he didn't point or make eye contact too much when he wanted something and instead he led me to it but he smiled and giggled so what was the problem? He could do simple wooden puzzles easily and recognised and could recite all his numbers up to 10 and back and knew the alphabet by around 20 months old. I thought that he was simply clever and his speech was slow. Within 5 minutes of observing him at just over 2 years old, the Paediatrician said she had concerns he was autistic and would be prepared to assess him. I was shocked because the thought had never even come close to crossing my mind and I was angry too. The Paediatritian was excellent in retrospect. She didn't push me to go down the road of assessment and agreed on a compromise of my son attending speech therapy. It was over the course of that year that I began to see more and more of the 'unusual' behaviours that can be attributed to an autistic spectrum disorder. At toddlers he walked round the walls, keeping a distance between himself and other kids and at one toddler group he would scream as we went in the door and we had to leave, at music class he couldn't sit in circles or follow direction; he often wandered off and did his own thing and when he began 2's group he would gravitate to a table and do the same puzzle repeatedly (and very well!) and before we went in he had to touch all the badges on the cars in the car park. When on any play apparatus (from toddlers on) he would get off if another child got on or sit blocking their way with a 'frozen' look on his face.

 

I am mentioning all these things because you may have seen something similar with your son. Early diagnosis (from my point of view) can be very very helpful in opening doors to services and support for your child and it can be crucial to understand the reasons behind the behaviours your child is expressing. For instance, I now understand that my son's problem with reins was a sensory problem and is closely related to other clothing and issues with 'restraint' etc. The problem on play apparatus was due to his confusion around other children and knowing 'rules of play' in order to play and interact in the 'typical' way. It also demonstates the anxiety which can form a large part of having an ASD. Screaming going into toddlers was due to a combination of a fear of another child who had screamed in his face and startled him which showed his difficulties with unpredictability and possibly too that he equated being screamed at to going to toddlers. I also recognised that he was much more comfortable in larger rooms with higher ceilings and better natural light. The very little I understood of my son's problems back then helped me make the decision for him to do a split placement for 2 mornings attendance at playgroup, remaining in the group and the staff he had been with for a number of months pre-diagnosis when he turned 3 years old. The diagnosis also meant that a referral was made via the Paediatritian and Educational Psychologist for him to attend a special needs nursery for 3 mornings per week.

 

It sounds like you have the best start for your son right now in that there are professionals taking your concerns seriously. Diagnosis may not be suitable for him and in fact, although the speech therapist can form an opinion, there needs to be a thorough assessment of all his needs by a multidisciplinary team to determine whether or not the diagnosis is correct. From what you say, the ball is rolling for that type of assessment to take place. What you have to remember is that although they will be looking for signs that development in certain areas is delayed or 'different' to 'typical' development, they will also take into account skills your son might have which are actually ahead of his peer group too. The key is that it is outwith the 'normal' range, much like my son was (and is) with certain of his abilities. This is called a 'spikey profile' because he could be very good at certain things - my son draws 3 dimensional drawing of houses at the moment - but very behind in other things - my son is not fully toilet trained yet.

 

Best Wishes

 

Lynda :)

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Hello there

 

Yes it's very important to give as much help and advice as possible its good to have an account of behaviours and specific needs and requirements. I was never diagnosed and had a life that I never fitted in and had lots of problems that I couldn't ever sort out on my own. It's good your doing so much and getting a lot of help and advice its invaluable. Life can be good and doesn't have to be as bad as mine and with the help your getting your child will have a good life. It's important just to be how you are don't push too hard as it was trying to be what I couldn't be that caused all my problems well most of them.

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Thanks so much - we've had so much to take in in a relatively short space of time (only since January) - it's a steep learning curve, isn't it?

 

 

..yep about as steep as they come! For me it was about processing all the information and seeing that it fit with my little chap....it made me look at all the difficulties we'd been having in a totally new way and the realisation that he didn't fit the remit for all the happy-go-lucky parenting books I'd read was a huge relief! The moment i came to terms with Jamie having autism (way before an official diagnosis) I mentally packed up all my baggage of feeling like a failed parent with an impossible child and put it all in a box at the back of the shed marked 'history'. Suddenly all his bonkers behaviours made sense because they had a real cause which could actually be predicted and avoided when we started to know what to look for! I hope you will find the help and support you need, but know that just caring enough to seek out information for Calum makes him a lucky boy. Wishing you all the best.

Mandy

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i would personally keep track calum's behaviour /issues through diary and may make you be able to help manage his emotions or behaviours more effectively come up with ways (advice/tips) further on how to improve,progress on his behaviour patterns involving different situations together with others involved such as SALT input to come up with action plan of how to adapt his needs

 

XKLX

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