To be utterly sad and angry that nobody listened to my concerns.(29 Posts)
I have had concerns for a couple of years about DC4 regarding his social interaction with other children and some of his behavioural traits. For instance he does not mix well with other children, hates eye contact, prefers to spend time with adults or older children. He also likes to play with pens and other household items instead of his actual toys. He is obsessed about wanting to know every minute detail about everything and uses very long words when they aren't really needed. typically over describes everything. He still has tantrums where he would lie on the floor kicking and screaming over really trivial things and his concentration is very poor. He doesn't settle well at school and is still crying and kicking up a fuss. He is 4 and in reception class since September.
I tried raising my concerns 3 times during his nursery year. Each time I was brushed off by her telling me that it was just his immaturity showing through as he is one of the younger children in the year group and it would sort itself out. The third time I approached her she actually turned around and said that she was not discussing it as I was imagining problems when there weren't any. Her parting words were that she had been teaching 20 yrs and could spot problems a mile off. To say I found her patronising would be an under-statement!
DS has now moved on to primary school and a few weeks ago his teacher mentioned at parents evening that she had concerns about him and basically repeated most of the points I made in the first paragraph. She seemed to be visibly relieved when we told her we shared those concerns. The ball has set rolling on getting him assessed to ascertain if there are indeed any problems which I strongly believe there are.
I just feel so bloody angry at this nursery teacher who refused to listen, we could have had some of this ironed out and a plan of action in place before he started school, as it is he is utterly miserable. AIBU in feeling pure naked rage toward her and her I know best attitude?
YANBU to be angry. It's a huge issue that it usually takes years for parent concerns to be taken seriously, and early intervention is very important for autism. Many children don't get diagnosed until much later, in their teens, and they are at a high risk of being in the criminal justice system and of having severe mental health problems due to the lack of intervention and lack of recognition of their problems.
Use your anger to keep fighting, you will need it. Even with a diagnosis, there is no guarantee that you'll get support, particularly tangible, guaranteed support such as a statement or to get DLA. There are pockets of excellent provision for ASD (my DS attends a fantastic special school which specialises in high functioning autism) but it's not easy to access it. The system is also changing regarding how local authorities will provide support, and it will make it much harder for parents to get the kind of help a statement provides.
There is excellent advice on the Special Needs boards here, and other forums. Get the ball rolling regarding his educational needs by looking at the Ipsea website. Don't rely on the school to sort out assessments - you need to be pushing for them. And read as much as you can about autism - you won't get a lot of help in learning about it from your local authority - and your understanding of the condition will help him far more than any assistant in the school.
DS1 is finally getting an assessment at age almost 14, yr 9 at school. You wil have to keep the pressure on them to get anything done.
To believe that it would have been sorted any earlier. I do sympathise with you though as I know too well whats its like.
If I was you I would think myself lucky as others don't even get a diagnosis at school despite years of their dps fighting for one.
My ds finally got a statement for Aspergers at 17, in 6th form.
YANBU. My DS2 has physical disabilities which I knew were there from when I was 6 weeks pregnant. The professionals all said it was all in my head, that I had AND, that all mums worry. My dating scan showed him alive but only moving when he was prodded. They all said, see we told you he was ok, I said his movements aren't right. Finally when he was 5 months old he was seen by a paed for failure to thrive. Paed said he also has low muscle tone and development delay as well. I breathe a sigh of relief that someone else is thinking the same as me.
This is different but I understand the rage you must be feeling and the feeling of being right when you wish you weren't.
YANBU I have a fourteen year old son who quite clearly has problems and nobody's listened to us properly since I was reporting concerns from the age of two.
We've had the same thing too. For years I've been saying that something isn't quite right with my youngest. She was in year 2 before anyone took me seriously
YANBU. Same again here, my DS had a heap of tests hen he was in nursery and scraped through. The school was sent lots of information and advice and chose to ignore it. It only really became a major issue when we found out he had been bullied for 12 months and as it only happened at dinner time he only told the dinner ladies who didn't seem to make a connection with the same lads being put against the wall every day for punching and kicking the same 2 kids.
I told head teacher my concerns and that I was sure he had Aspbergers and her answer was that her son did and he was much worse so didn't see my problem
to this day I don't know how I didn't kick her teeth in
Went to secondary school and finally got taken seriously. The label actually comes as relief, please don't see it as a bad thing, it's not a label more of an explanation and a huge help in you learning to deal with your child
Keep pushing, trust your instincts.
Please don't worry about the labelling aspect of it. Please try to think as the label as the door to support. In an ideal world every child would get the help and support they need just because they need it, unfortunately in today's world that just doesn't happen. You may be in for a long haul unfortunately, but the label at least gives you and your family some protection.
To flip your situation, when a teacher says to me 'well I have 20 years experience and your DS just needs to pay attention' (last week's piece of helpful advice) I can say, 'No, he has a SN. How are you going to help him learn to pay attention.'
That all said, she was a witch. It's not uncommon. But anger won't help you. The SN boards here will though. And the other thing is if you suspect a particular diagnosis, you don't have to wait, you can start putting strategies in place to help - they can't hurt, even if you don't get that eventual diagnosis.
Masses of hugs to you. It's tough.
My kids are my kids first and foremost. Complete little people.
I only ever use their labels when dealing with the system - education and benefits - and in debates here. Otherwise they're just the kids.
The label really doesn't matter in the family situation.
Thing is though he's still him, label or no label.
You could find out he has aspergers tomorrow and he's still him.
But the good thing is that with that label comes help in school... without it he'll still be him but without any help.
I understand your dilemma OP, lot of DS2's behaviours at age 3-6 could be explained by social immaturity or just some areas of development maturing faster than others. There's no harm in getting your DC4 some support for now though, and getting into 'the system' can help facilitate a diagnosis later if he needs one.
Thanks for all your replies! The anger I feel is not helping at all and I know I have to get over that and focus on helping my son. I just feel so guilty. We are still hoping though that it may be a phase that he grows out of and is down to being a bit immature, we did discuss this with the teacher as being a possibilty. I am very impressed with his teacher, she appears to be very knowledgeable and on the ball.
Part of me is a bit wary of labelling him so young, I feel so conflicted. I just can't ignore my instincts on this one.
I feel for you. My DS has only got on the road to diagnosis with Aspbergers in yr 8 DESPITE constant involvement from me at primary school. They were really good with him but denied he could have ASD. Its only now he is not coping with the noise and bustle that things are moving. I feel guilty that I took the primary schools word, thinking they knew what they were doing.
apologies for spelling mistakes -fat thumbs n small phone!
Hi this is hard but move on and move forward. Similar situation for me. Prob best I don't go into too much detail but 4 is still young. If you start reading forums you will see that many go undetected until much older. My child is not as yet diagnosed but I know it's coming. It's a crap day in my life that I need to get past. Start reading and understanding. Try and keep a good relationship with school. Be brave!
I feel your concern...i was fobbed off by teachers and health professionals for a very long time.
it is only now as my ds's coping strategies become more apparent and disruptive that he is on the road to diagnosis.
I think it just depends on who you deal with. His yr 1 teacher was never interested in our concerns, whereas his now Yr 2 teacher and teaching assistants tries very hard to accomodate him.
I know the anger, it comes from years of being to feel like a bad mum who is looking for faults in her own child. As though you dont know or love your child, when the reality couldnt be further from the truth.
well done for perservering and good luck!
seems to be common - my mum knew something was up with my sister but was fobbed off til secondary school when she finally got diagnosed with asperger's.
she also raised concerns with docs about me and was fobbed off but was later proved to be right. the damage was done though and i have a fair bit of pain to live with as a result.
YANBU. We had a similar experience with DS2 all the way through infant school. He was not even put on an IEP, the school only had negative things to say about him. Within less than a term of moving to junior school, he had been seen by the educational psychologist, started getting support and was well on the road towards a diagnosis. Just after he was diagnosed, I happened to bump into the last teacher he had at infant school and I mentioned the diagnosis. She said "Well I could have told you that!". Why didn't you, then? You had him for a year!
My daughter was just like this until age 5. She was at a nursery and didn't speak to anyone there! She wouldn't talk or make eye contact with anyone except close family and occasionally older children at the park, even grandparents would be ignored for the first hour or so. Yet she would talk away at home. She also has never shown interest in any toys whatsoever. She went through a stage of pouring milk/water anything she could on the carpet or bed - it got stupid - we had to padlock the fridge or she would pour a whole gallon of milk on the floor. I was finally told the nursery didn't know if she could count or read as she had never once spoken to them! In a year! I sat in class and saw the other kids being doctors and hairdressers and playing wonderful games - she sat in a corner rocking herself and looking at a book, not interacting. I was sure there must be something wrong.
Age 5 she came out of whatever strange stage it had been. She started talking to kids her own age (previously only older kids were played with) and she started participating.
So maybe the nursery staff had seen some other kids like this before, like mine, and thought it might be grown out of? It was wrong to be rude and dismiss your concerns, but maybe they thought it was too soon to label a child.
I hope you get answers. I don't think harm is done in waiting till now to get them though - 4 is still so young.
You really are NBU.
Quick tip for you, with everything be the squeaky wheel. Otherwise in the cuts you'll be ignored.
As far as I know, even medical professionals are often reluctant to give an Aspergers diagnosis until DC are older, in this country.
I agree it's upsetting you were brushed off by the Nursery teacher and she should have taken your concerns more seriously. I hope your son will get the right support for him.
YANBU at all, I had similar experience. I am angry that the system let my DS down, so I know just how you feel.
Like Kafri said - you have to fight and keep fighting
Hey, I work with kids diagnosed with ASD and the one thing I cannot stress enough to people is that you have to FIGHT for support. So, if it turns out that your DS is diagnosed as having any form of SN then please fight or your rights. The kids I teach are all at the more severe end of the spectrum and some of their parents get no support whatsoever outside of school. I don't want it to sound like a negative as I LOVE LOVE LOVE my job but just wanted you to be aware and not be fobbed off by your funding authority. It's a case of he who shouts (kicks and screams) loudest gets the funding while the parent playing nicely about it all is left to cope.
Thank goodness for his teacher now though, and that the ball is rolling so quickly.
I would also check with school that they are implementing some strategies now, without waiting for the assessment, to help him cope on a day to day basis.
I, too, raised my concerns about my son when he was at Nursry. Then again at Primary. He was Statemented (with a fight) at Primary, but was not diagnosed with Aspergers until he was 11.
Fight, fight, fight - don't give up, or give in. Trust your instincts and do not be fobbed off by anyone, OP.
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