Published on 12, July, 2020
Hi
This is my first post here.My 2 years old son was referred to community pediatric .I received a letter today with questionnaire for parents and school/nursery .My son doesn't attend any nursery or play groups.We were a few times in our local children centre but it was to hard for me and him to cope.
Should I send back the school questionnaire with my ?
I am scared and confused .
I do not know where to start.
I am not English however I have lived in UK for last 13 years.My son was born here . He was under care of pediatric team from 4weeks old due to silent reflux.At age of 3 months he had episode of sezuire like attacks.He had we eeg done and we have been told it was due to his refluxs .Never happened again.He was discharge from clinic at age 16 months old.
During his appointments in the clinic I stressed several times that I have some concerns about his behaviour like not reacting when call, not smilling,not playing with us,not babbling a lot,not sleepingBut I was told that everything is fine.
My daughter was born when my son was 17 months old.Two months later he stopped talk.Well he had only two words:daddy and nanny.He never call me mum .
Only then my husband agreed that something is not right with him.
We took him to HV and GP.Only HV agreed that he is showing some signs of autism: repetive behaviour,no eye contact .
But we have been asked to wait until his 2 years old assessment.GP was the same.
We took him privately to see psychologist and she agreed with our concerns but because of his age he should be seen again when he will turn 2.
Well after his 2 years assessment he was reffered to community pediatrics by gp and for hearing test.
I was informed only then that I can reffer him for speach therapy ( still waiting for appointments). That of reason we took him to speach pathologist privately.After initial assessment we have been told that my son speach is on level of 12 months baby. We started therapy with her.And I think his understanding is better .After two months of appointments once a week he started to say daddy and nanny again .He can say all sounds of farm animals.All together he has a few more words like come,there and here.
We still have problem with his sleep.He never slept through night.He can be up 4-11 times at every night.We are knackered.
He can not express his needs when he is hungry or thirsty.
He has a lot of meltdowns when we want dress him and go out or when we came back home.I just cannot stand them.It can takes over an hour to dress him and go out and after return home another hour or longer to calm him .
Sorry for so long post.
I do not have family here to help or so close friends.
I really do not know what help we could get.I really would like to send him to nursery but after 2 years of maternity leave we just can not afford it.
We not claiming any benefits because we both work full time.Hovewer now I think I'll want be able to comeback to work.
My HV is just useless and not want or cannot help us.
It took us 8 long years to have my son.And now I am just so tired and depressed.
What I should do ?Where to ask for help? Is it any financial support which we could ask for?
What to do with school questionnaire ?I am scared that without professional opinion he won't get appointment with community pediatrics .
Please advise me.
Firstly don't panic. It's fine everything is going to be just fine. You have lovely little boy who needs a little more attention than his piers that's all. You need to empower yourself by reading, researching and finding out what is going to work for your son. There's absolutely tons of great advice on how to help young person whom either has confirmed ASD diagnosis or its just suspected.
His meltdowns could be related to a change. Going out and coming back from somewhere even if it's a routine trip - can be stressful for ASD children. Have you tried to explaining next steps to him? Before you start to prepare to go out either tell him or use visual aids to explain that you will be going out soon. Explain where you going, what you are going to be doing, for how long (all this needs to be on the level of child's understanding depending on age and ability). For example you can print out a picture of clothing and say to him ''We will get ready, put theses on'' and then show him a picture of a shop ''saying we are going here to get ice cream''. Once you done shopping do the same for going home. Etc. Sometimes it's the unknown that makes it all scary.
His meltdowns could related to something environmental, does he get too hot when you dress him? Do labels annoy him? It is the seems on clothes? Could be a lot of different factors and I would suggest trying to eliminate ONE at the time to get to be bottom of the problem. For example for YEARS my son was complaining his shoes were to ''flopy'' I could not understand what he was saying, his shoes were so tight it would mark his feet and he'd still whine and cry and refuse to walk. It was a nightmare. We couldn't go anywhere without huge meltdown at one point or another. When I stopped being annoyed at him and myself for being so helpless I started to look for a 'solution' for floppy shoes. We went through a stage of buying any kind and type of shoe to work out what it was that was bothering him. At one point he had more shoes than we all combined in the household. Nothing made a difference. And then one day I though 'Hold on... Is it shoes or is it SOCKS that he has problems with?'' and as if by magic after I got him socks which were elasticated around the foot (making them feel tighter when on) his meltdowns simply vanished. I kid you not it was better than winning any lottery!
I know I went on about something that is unrelated to you and your son. But its' just illustration how working out what is bothering your son (because he can not tell you) can solve a lot of heart ache.
For children with ASD expressing their feelings and emotions is incredibly difficult and therefore communication with adults become difficult making them anxious - causing them to meltdowns.
If you could imagine that ALL the behaviour is actually a language you son is using it will be easier for your to keep calm. He's not purposely making it difficult on himself and you, he's not being naughty! and he doesn't want to feel that way.
It's hard real hard to get to the real core of the 'problem' but once you get there you will find a way to help him and yourself.
With regards to financial help. You can claim Disability Living Allowance for your son, and depending on hours you work possibly also Carers Allowance. A child DOES NOT need to be diagnosed to receive it. The level of support will depend on the amount of extra support your son needs at home, and when out and about. There's a lot of DLA related posts that you could scan through.
Depending on your work situation it might be worth having a conversation with HR. Explain to them that you are having hard time at home. Be honest there's absolutely nothing to be ashamed or embarrassed about. Could you ask for more flexible working hours? Working from home some time? Part time to tie in with Carers Allowance?
Regarding your form. Fill the section for parents of course. If you have a family or a friend whom knows your son well enough to describe the difficulties you have ask them to fill other part. If not just send it as it is. Even if this 'fails' even if he doesn't get diagnosed at this point , honestly DO NOT worry. The ASD diagnosis is just a paper. You would most likely receive a booklet with in and be sent on your marry way with NO external support from services any way! When he starts nursery at 3 or school at 4 you can pick up the 'formal diagnosis' thing again with their support. Perhaps look into Educational Health Care Plan (EHCP - that is for the future don't worry about it for now).
For now give him big fat sloppy kiss and remember he's not intentionally difficult he's just really bothered by something and can't tell you what it is. And the behaviour is the only way he can express himself (for now!). He loves you and needs your love back no matter how ''bad'' things get.
Thank you for your kind words.
I started to explained to him everything what we are doing and the most important why.
I think it helped a little. I love him .His is my little miracle .
I finished questionnaire today. Also I enclosed a report from his SLT (private one)
I cried all day after reading it. I know that he is delay in his speech but why it is so difficult to read.
I do not agree with her report that his understanding is so poor.
We have on Monday assesment from NHS SLT so I will have comparison.
On monday we also are going to see his GP and ask for help with his sleep.We just can not carry one like that