New face

Hi well Patric had his home visit yesterday from Autism Assessment + Diagnostic Service, he was seen by a Specialist Speech + Language Therapist for Paediatric Autism.  Her conclusion is that my wee man IS on the Autistic Spectrum.  Devastated although I had a very strong feeling he was, just when you get confirmation it is heartbreaking. 

Hi Lyn,

My son hasn't seen an autism clinician before so I can't be of much help i'm afraid. The diagnosis/treatment order and process seems to be very different around the country. I still seem to be on more waiting lists awaiting further help for him. I'm happy to report though that he has made some great progress over the last few months.

Has Patric now received his diagnosis? I hope he is starting to make some progress too.

Nat

Hi just an update, Patric is having a home visit this thursday from Autism Clinician.  What is involved?

Hi Lyn,

Thankyou for coming back to me. I'm very happy to report that i'm having a very good week so far as my husband is off with me. Its so lovely to be able to take the boys out with him and enjoy the change of environment with them.

I've recently been in contact with the health visitor who is applying for my youngest for some childcare which would be available from when he is 2 years. Unfornately this is dependant on funding so I just have to keep my fingers crossed.

I'm really sorry to hear how unresponsive your son was on your trip to the country park. I find it so upsetting when my boys are that world of their own. My eldest son is only just starting to give us those first little wonderful moments of interaction, it is so lovely to sometimes be allowed to join in his world. Those times are very special and worth waiting for. I really hope it won't be long before your son is able to do the same.

Best wishes with everything in the future. Nat

Hi Nat, you say that your eldest goes to childrens centre which is great but have you tried to get your other son into a creche?  Ive just got my son into creche 2 afternoons a week.  This was recommended by an education pschyologist.  Although it breaks his heart when I leave, its a little bit of a break for me as I can spend a little time with my 2 girls.  Contact your health visitor and ask her advice.  If you are referred through social services it doesnt cost you anything.

We took our kids to a country park today, and the 2 girls loved it, they played on everything, the wee man just wanted to stay at the slide so I spent my whole time there while my hubby took the others.  We also had a picnic, which he didnt eat anything at all, we played ball and ran around, he just sat in his pram (wasnt strapped in).  I said to my husband how heartbreaking it is just to watch him sit there.

Lyn

Thanx Lyn. I'm just trying to take one day at a time and stay as positive as possible. Unfortunately there are alot more bad days than good days at the moment. I really look forward to the weekends when my husband is around to help but the weekdays are very hard when i'm on my own. I am unable to take both the boys out alone as they have absolutely no sense of danger at all and are unable to follow even the simplest of instructions. Just a normal trip to the park is out of the question. I have had to stop taking them to friends houses too, as they are just so destructive. I am completely unable to control their behaviour and am often housebound. Any change to my eldest son's rountine will also cause him to have one of his screaming and groaning fits. I know in time things will get alot better just have to stay strong in the short term.

I feel alot happier knowing that my eldest is starting to make improvements with the help that he has recently received. He goes to a specialist childrens centre 3 mornings a week with other similar children. We are also using makaton, PECs and a visual timetable for him that all seem to of had a positive impact. Still on alot of waiting lists for him as well tho!

Thanks for listening, feels better just to write it down sometimes. Nat x

Hiya Nat, thank you for your comments.  I too can relate to those feelings, theres anger, hatred, frustration, the list is endless.  The one thing I can say is that there are good days and bad days.  Make the most of the good days, enjoy them! The bad days are awful.  You just feel like running away! Please speak to a family member or close friend, cry, its a feeling of emotion that needs to come out and some times it feels better afterwards.

My little boy is so happy.  He doesnt miss what we all take for granted because hes never known it.  Its us!

Chat anytime I am always here

Lyn x

Hi Lyn,

I'm also new to this site and can completely empathise with everything you have said. I have a little boy who has just turned 3 yrs who has recently been diagnosed with ASD. Although we are now starting to get alot more help for him, my son still only has about 20 words. My husband and I are constantly wondering about what the future holds for him. I also have a little boy of 20 months who has also had to be referred to the paed. He has no speech and very limited eye contact. Unlike his brother, his behaviour is very aggressive. Have found it very hard to accept that he will almost certainly be facing all the same challenges.

Day to day life is a real struggle at the moment. I often feel very isolated as it feels like no one else understands how hard everything can be.

Hope this site has helped you and hope you are also still making positive progress with your son. 

Hiya Angela, good news since last post.  Patric had his MRI scan on Thursday 28/04, got a call from hospital, they had a cancellation.  Great to get that over with.  Now waiting for the results is next issue.  I know Autism cannot be detected through an MRI but it will show if anythings wrong (fingers crossed there isn't).  Got Statement application process for school to go through aswell, hes been assessed by Education Pschy but this now has to go to SENCO.  Any advice with that?

Im so glad to hear that you are finally getting the help you need.  Keep strong.

Lyn

Still fighting for all the help we can get.  The only thing I can recommend is to keep calling the hospital or wherever you are on a waiting list and keep on at them.  We got put on a waiting list and then left having been told it would be 6 months.  I rang up and basically told them everything we are going through and this got us help more quickly.  My son has been suspended from school approx 10 times in the last year and it's been a real fight to get help but I now have lots of useful numbers in my area and am working my way through it asking for more help.  If you sit and wait "nicely" you will be left to do just that (imho) so you really just have to make a bit of a nuisance of yourself I'm afraid.  It shouldn't be that way but it is.  Max didn't  speak until he was about 3.5 and would not socialise with other children in any setting and we were told this was normal.  We only got help because the school nurse came to our house and realised that the Max at home is massively different to the Max at school.  At school he is aggressive, constantly hiding, destructive, the list goes on.  This behaviour didn't manifest so badly at home as we were managing it without realising we were doing it so I was made to believe that I was a bad parent with an outrageously naughty child :(  My poor boy spent most of last year being punished for something we now know he cannot control.  Just keep pushing - if you are on the waiting list at the hospital they have a really useful booklet that everyone gets in my area (I guess it's all the same everywhere?) we have been sent it early so that we can crack on with getting help.  Very much worth finding out if there are any groups of parents with similar problems local to you as we got soooo much information from there too that we probably wouldn't have got otherwise.

Hi Antrim

Welcome to the forum.

As other people have said, you are certainly not alone and if you have any queries or concerns please post them and everyone will do their best to help you. 

CC xx

Hi Lyn

You are not alone,  my boy is 3.5yrs, diagnosed last year, had eeg scan and bloods taken but have been waiting since last May for results and follow up appt with paed. At last got that tomorrow and v nervous still as nothing has changed or improved. No speech but have been told he is still young but I still get upset and worried for future as I am older mum on my own and cant help thinking if something happened to me who will look after him as although his dad does see him fortnightly he just doesnt seem to understand his problems. I also hate it when I get that sinking feeling when other mums I know are discussing what theirs are doing and have their future all mapped out for them and I just cant do that. Luckily he is good natured and passive with a few tantrums here and there and I was lucky because it got picked up early mainly because he has hypermobility and I mentioned his behaviours to the physio and she got me referred to childrens health. It is hard as nobody can give you the answers and all I worry about is school next year and how will he cope and mix with other child and will he make friends. Try not to get too down, I did and found myself isolating myself further from everyone as I still blame myself some days...

Hi, thank you for your reply.  The hardest parts for me I think are lack of support and what the future will hold.  I live from day to day and find some days unbearable (like today).  Every channel that I have tried to follow up leads to me being on a waiting list. Im on waiting lists for everything and sometimes you need that something instantly.  Just dont know where to turn too.  If Im honest its driving a barrier throught my marriage.  My son doesnt talk, he has had 4 words but they have gone again.  He just makes noises, squeals and screams.

Tell me a little about your little boy.  Does he talk?  Has he delays in other areas?  What help have you had? What help is available to you and son?

Thanks again

Lyn

You are so, so not alone!  My son is 6 and has been diagnosed with ASD and we are now on waiting lists to finally get help.  It's been a hell of a time for me and my husband, guilt (what did I do wrong in pregnancy?)  Depression, fear for the future, anger at various people including school who just wrote him off as "naughty" and that evil feeling of being totally alone in all this.  We're both still working through all this but have good days too!  If you need a friendly ear, I'm here :)