New and looking to meet parents with experience of autism

[twinmommy1]

Hi ladies and gents - my 3 year old son has recently been diagnosed with autism. It didn't come as a surprise to me as I have been battling since he was about 16 months old to get people to believe me - he is a twin and I was able to see major developmental differences between him and his twin sister. He is now attending a specialist autism unit where he will be for the forseeable future as he is completely non-verbal. Would love to meet some more parents who are dealing with autism as it's alwyas great to speak with people who can relate with how difficult it can be xx

 

[sun]

There are quite a few ladies on here who have kiddos with autism. My 3yo has been officially diagnosed with Global Developmental Delay and Speech Delay - not sure what is to come in the future, but that's where we are now. My son is seen by speech, OT and a dietician for his (lack of) eating. This forum is a little slower than the others on here, so it might take a few days for the other mums to find this post. xx

Welcome and hugs!

 

[twinmommy1]

There are quite a few ladies on here who have kiddos with autism. My 3yo has been officially diagnosed with Global Developmental Delay and Speech Delay - not sure what is to come in the future, but that's where we are now. My son is seen by speech, OT and a dietician for his (lack of) eating. This forum is a little slower than the others on here, so it might take a few days for the other mums to find this post. xx

Welcome and hugs!

Thank you so much for your response - we have also seen a dietician as my son eats very little and is very fussy with his food i.e doesn't like certain foods touching each other, unable to use a spoon, fork etc - good luck with your little 'un hun and thanks again for your reply xxx

 

[Lucy139]

Hiya and welcome... My son is 4 years old, and has a multi disaplinary assessment on the 3 rd march... (I am expecting them to say he has autism) i have been in the process of seeing HV's doctors ect since he was 18 months old when I noticed he was very behind in development compare to my sisters little girl who is 6 moths younger. My LO didn't speak untill he was 3 and a half he is now 4 yrs 4 months and doesn't stop ( although not always clear)! He goes to nursery which has helped loads with his interaction skills, he hates to many people around him, loud noises, very repetitive, likes to play alone, makes no eye contact, I have major trouble taking him out in public without him creating merry hell.. What is your son like?! Does he communicate in a way which u understand him but no one else does?! Hope you don't mind me asking how do you cope with 2 children when one has autism I would love another, I know if I do the risk is higher that the 2 nd baby will have autism but I'm not really worried about that just how I would cope getting out and about ect... All this being said my son is one of the loveist, funniest children I've met when he is having a "good day" xx ( sorry if this makes no sense I'm on my phone and can't seem to preview my message)

 

[twinmommy1]

Hiya and welcome... My son is 4 years old, and has a multi disaplinary assessment on the 3 rd march... (I am expecting them to say he has autism) i have been in the process of seeing HV's doctors ect since he was 18 months old when I noticed he was very behind in development compare to my sisters little girl who is 6 moths younger. My LO didn't speak untill he was 3 and a half he is now 4 yrs 4 months and doesn't stop ( although not always clear)! He goes to nursery which has helped loads with his interaction skills, he hates to many people around him, loud noises, very repetitive, likes to play alone, makes no eye contact, I have major trouble taking him out in public without him creating merry hell.. What is your son like?! Does he communicate in a way which u understand him but no one else does?! Hope you don't mind me asking how do you cope with 2 children when one has autism I would love another, I know if I do the risk is higher that the 2 nd baby will have autism but I'm not really worried about that just how I would cope getting out and about ect... All this being said my son is one of the loveist, funniest children I've met when he is having a "good day" xx ( sorry if this makes no sense I'm on my phone and can't seem to preview my message)

Hi Lucy - thanks for your reply and it's quite comforting to hear that your son, although not speaking until he was 3 and a half now chatters a lot. My son has been attending a specialist unit for the last 6 weeks or so, so it's early days yet and we havn't noticed any progess yet but we have heard some great things from some of the other parents whose children attend. He is very, very difficult to cope with. He is completely non verbal and takes us by the hand, guiding us in the direction of whatever he wants. The only problem is that when we get there, he could want any number of things and he gets very frustrated when we don't know what he actually wants or needs. He has complete meltdowns for apparently no reason (well not to us anyway, but obviuously significant through his eyes). Having had twins, then obviously I had no choice with regards to having to look after another child alongside a child with autism. But, had I only had my son, then I can honestly say that I probably wouldn't have gone on to have any more children. I hope that doesn't sound awful but he is so full on and I sometimes wish that I could give him my undevided attention. I love my daughter to pieces but looking after two children with such differing needs can be so difficult at times. It's particularly difficult for us as we have no family living nearby and therefore respite (just a couple of hours alone together as a couple) is pretty much out of the question. We are currently awaiting a decision on a sitting service that's provided by the Disabled Children's Team and if we get that help then it will make things a lot easier for us xx

 

[Lucy139]

Your LO sounds very much how my LO was when he was non verbal, he would just point at things and get very upset over me not knowing what he wanted. Although he is talking now they say he is talking at the age or a 2 year old rather than a 4 year old ..I totally understand how you feel about if he was your first he would have been your last baby, this is pretty much how I feel although I would love another child, a baby takes up alot of time and with LOs temper, tantrums, laughs and tears, i have a pretty packed day!! The speech therapy waiting list was 18 months long in our area, and the appointment was only once a month.. However we decided to let him play on the iPad on number and alphabet games these helped him massively in bringing along his speech, the speech therapist said they were a great idea and childrens abc YouTube videos there very catchy and bright coloured so can keep a child interest whilst helping them learn. A special educational needs teacher also goes to the nursery every 2 weeks to check on him and how is he with the other children and developmentally as he will only play along side another child but not actually with them...he is VERY obsessive over trains ?! And being clean?! Is your son like this, is there anything that he will play with over and over again? My son will share any of his toys but god help if anyone touches his trains that he has lined up xx

 

[twinmommy1]

Your LO sounds very much how my LO was when he was non verbal, he would just point at things and get very upset over me not knowing what he wanted. Although he is talking now they say he is talking at the age or a 2 year old rather than a 4 year old ..I totally understand how you feel about if he was your first he would have been your last baby, this is pretty much how I feel although I would love another child, a baby takes up alot of time and with LOs temper, tantrums, laughs and tears, i have a pretty packed day!! The speech therapy waiting list was 18 months long in our area, and the appointment was only once a month.. However we decided to let him play on the iPad on number and alphabet games these helped him massively in bringing along his speech, the speech therapist said they were a great idea and childrens abc YouTube videos there very catchy and bright coloured so can keep a child interest whilst helping them learn. A special educational needs teacher also goes to the nursery every 2 weeks to check on him and how is he with the other children and developmentally as he will only play along side another child but not actually with them...he is VERY obsessive over trains ?! And being clean?! Is your son like this, is there anything that he will play with over and over again? My son will share any of his toys but god help if anyone touches his trains that he has lined up xx

Jake doesn't really play with conventional toys but he has a thing about pairs lol - it's like we bought him a helicopter but he doesn't play with it. Instead he has taken the two propellors off and runs around with one in each hand screeching excitedly bless him - a few weeks ago it was 2 poster tubes lol. We took the kids to Macdonalds yesterday for a treat and I got him a balloon but he had a meltdown. I couldn't figure out what he wanted at first and then I realised that he wanted another one for his other hand and he hasn't put them down since - he even took them to bed with him last night lol. Jake is at a specialist unit and they are doing speech therapy there with him now along with implementing the Picture Exchange Communication system which we are also doing with him at home. He also has an Ipad and whilst he hasn't gotten to grips with it yet (won't touch the screen himself, but uses my hand instead) he is definately showing an interest. They use an Ipad with him at school and I have a meeting with the head of the unit next week to discuss what apps they use with him there so that we can have some sort of consistency between home and school He is such a lovely kid though. In general he is so happy and just in his own little world, which we call 'Jake's World' and meltdowns are getting fewer as we learn more and get to understand what he wants and how he views the world. How have you found other family member's reactions to your little one if you don't mind me asking? My parents have been very unsupportive and refuse to believe that there is anything wrong. They just say that he needs more discipline and that he needs to go to a 'normal' school so that he can learn how to act 'normally' - it makes me so sad because they barely see the kids and have no idea how hard it is for us xx

 

[sun]

twinmommy - Good to hear you are doing PECS - I know lots of mums who have had really good success with this (also Makaton - but it depends in the kiddo). I did signing with my son and picture cards that I made. Through our treatment centre, I was also able to take courses in toddler communication (for non-verbal kids) and also one on behaviour. I still believe these were one of the most valuable things I got, as they helped immensely in my understanding of my son and my ability to manage his behaviour. It really changed our daily life and helped us both deal with each other. My son also has issues with food touching each other, so I got a compartmented plate and series of bowls and forks to use at dinner. He is eating more since, though he still only wants things that are crunchy.

I'm so so sorry that your parents aren't supportive though That is a tough one. My in-laws were similar and always saying I was being too lenient and he just needed to smarten up Do you have access to a support group in real life at all? (We're here too of course, but it's great to meet people IRL). Does your centre have a respite program? hugs xxx