Welcome Ley :hug: you've had a lot on this past year.
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Welcome Ley :hug: you've had a lot on this past year.
Sooooo what is everyone doing to prepare for school? There are 2 weeks, so I'm starting to think about how to prep....
welcome Leyza and KarlaO
2wks till school how did that happen! Xander pointed out that to me just tonight as he was going to bed it's marked on his calender and he is counting down! We should be getting a letter from his teacher any day now which introduces herself etc and apparently the learning support teacher has taken some photos of his new classroom which she is send - oh interesting point for transitioning - DS did this transistion program going and visiting the classroom a coupple of times a week in the lead up to school finishing - problem is now he expects the last years year 1's to be there!!!
What's the general concensus on school things? Xannys bag/lunch box etc are still in good condition so I was thinking about reusing them for a little while so it's not all new IYKWIM
I am really confused about what to do with DH new job looming. I wish we would just find out one way or the other so I could prepare for either scenario but on the other hand I hope it takes a while so that he can finish out first term. Grr if this is how our kids feel all the time I can understand why they have meltdowns!
oh Sarah exactly! If this is how our kids feel... on the school bags front, I asked Matilda if she wanted to go shopping for a new school bag & she started screaming.... in the end it was because she wanted to keep her Dora backpack. I hope it holds out!! Also the lunch bag front, she wants to keep it. I guess everything else is going to be new or different, may as well keep a few old things.
Matilda did some trial days last year, we went to the school for 3 days and then a few other "visits". She was so excited. Now she tells me where her desk is and where she eats lunch etc... she loves the school.
Karla :hug: That is a lot to absorb! Hopefully you will get a lot of help and please join a support group. Your pead (or mchn) will be able to put you in touch with your local one.
Ley he sounds a lot like Mason! I'm sure he'll cope fine with the baby. One thing I've noticed is that kids on the spectrum are fascinated by bubbas and are accepting that the bub needs mummy more than them. I also think that could be because they get to watch your tum grow kind of like a live picture display.
I'm hearing about school all the time and how he will be a grade 1-er. A bit nervous about his aide, especially after he had such a wonderful one last year. Wish we could keep her :(
Yes we have decided to stick with everything the same except there is a shoe issue. DS is reaching the limits of his joggers but they are in fab condition - could be the fact they are off his feet at any opportunity :-) now I get a letter in the mail to remind everyone that formal uniform (3days a wk) require leather lace ups WTF? He just had black joggers all the time last year so not sure if I didn't read it right last year but feel a bit obvious now a special note has gone home about it to just ignore it... but DS struggles to get socks on and off I (and he) are not ready for the battle of shoelaces at the moment - I'm thinking of ringing and asking for some special consideriation to keep his joggers or do you think this will cause more confusion (esp if a teacher picks him up on it out in the playground)
Bonus - he still fits into his uniform from last year - phew. Might pick up one more shirt just so I don't have to wash so often. BTW blessings to the lovely uniform shop lady last year who recommended we get second hand shirts for softness and comfort (I think she has someone on the spectrum - so understanding)
Also when do you think the best time to schedule an interview with his teacher is, before school or a few weeks in - she is (as far as I know) aware of the situation and I am torn (being a teacher myself) whether I do the whole paranoid parent thing and go in now or wait for her and him to find their feet first?
OMG I am rambling at the moment - sorry
Raven - that is so tru about the baby thing! Xander did so well when Ariya was born! And ditto on the aide issue. At a seminar I went to last year they recommend schools change aides at the end of first term rather then the beginning - sounds so much better to me!
Sorry girls..i have to catch up...having a misserable emotional day on the Wihelm front. Its his 7th birthday :(
Jed and I layed in bed last night talking and I told him how I felt. I told him that I was sad cause 7 years ago we didnt know that our perfect little baby who was about to be born would have to fight discrimination, his own thoughts, the way the world is for him and fight to be recognised for who he is. I remember holding him and smelling him for the first time...how perfect his skin was, how delicate he was and how niave we were to the road ahead for us.
i sort of wish that it was still like that. I cried my eyes out this monring....he was asleep and I said...
Wilhelm...Happy Birthday
and his face lite up...OMFLUFFY goodness he understood!
All day he's been telling me its his birthday and that its his special day. Its taken his 7 years to undertand it....ahh here I go again...
Im going sorry girls...said its been emotional day
will catch up later I think
oh Maz that is beautiful. :hug: that is lovely.
Hope you all had a lovely day Maz, thinking of all of you
GRoan WHY can't parents or IL's understand the needs of super kids, or why can't they put kids ahead of them?????
Hi Ladies
Thanks for the welcome. Not too long and school is back. I am impatient for it to start as the routine does everyone good in my house!
I was reading back through the most recent posts and want to give a huge hug to Karla. I am challenged everyday by my little man, in good and not so good ways, and I can't imagine what it must be like for you to have each of your children have difficulties. It is especially hard when they are formally diagnosed, no one prepares you for the grieving process you go through for your child.
Oh Maz, I can understand what you mean. I know your little fella is a few years older than Oscar, but you truly do get the biggest surge when there is any sort of understanding, recognition or acknowledgement shown. Oscar's development has just gone at a snail's pace especially with his language. He has a severe recpetive and expressive delay, so anything that we can get out of him is music to my ears. He has only just started to point to things he wants the last couple of weeks and we find it amazing, he is four in a couple of months! I have two nieces that are developing normally and I just don't think their parents truly realise how lucky they are to have little girls that can communicate with them. They are 3 and 2 and talk circles around Oscar.
I feel very patronised by my family at times where Oscar is concerned. They have no clue what it is like to manage him 24/7. Atm we have been trying to toilet train and things have been going very well, apart from the fact that wearing undies confuses him and he ends up having accidents in them. We have slowly been getting there. Well this week we have taken two steps back, he has constant accidents and has developed a poo fixation. Yesterday while I was checking my emails, he covered the loungeroom carpet and some of the kitchen floor with poo. And himself. When I told me MIL, she laughed and said, "Yeah we had that too when the boys were little. They covered their cot and them selves in poo". This a boy that is nearly 4! Not a baby in a cot! I could have slapped her, I really could have.
Anyway sorry for the vent. I get very frustrating with my partners family in particular.
Good luck with getting back to school routines this week
mmm Matilda hasn't made it through a day without wee'ing in her pants once this month! I don't know how she is going to start school.
Hi all - yuck school! Why is it always the same cow poo I really thought this year was going to be different. I'm so sick of teachers looking at me like I'm an idiot and telling me my child is "doing fine" when he obviously is NOT and then 3 wks later requesting meetings and with all these problems arising. I'm sick of seeing him try and interact with the other kids and fail and getting into trouble when he doesn't understand what wrong:cry: I wish he didn't like going so much and then I would have an excuse to homeschool. Do you really think he is enjoying it.... I don't know whay he would say he likes it if he doesn't. But if he likes it why are we on such a serious sensory overload at the moment. We are building up to a HUGE meltdown and there is nothing I can do but keep dropping him off at school.
Anyway there is my rant for the day...
Christy how is Matilda going???
Maz has Wihelm had a good first week back
Leyza :grouphug: I know what you mean! I honestly think they believe they are trying to make us feel better by normalising the situation but that really just makes us feel worse. Have you checked out the aspect site - they have some really good ideas on toileting.
Well I am off to bed ready to jump on the merry-go round again tomorrow morning
:hug: oh Sarah... :( its so hard. I will go and pick up that book now from the teacher & post it off. Matilda's teacher has said it will help her which is wonderful.
I'm a bit nervous posting in here, but i don't know where else to go for advice/support...
I will pre-empt my post by saying my dad was dx with Aspergers as an adult and though i have never been dx i do have some sensory "quirks" which my parents regarded as part of my normal. Mainly i have a tactile and oral fascination. Even at 28 i still suck my thumb and have to fight with myself to keep from putting anything and everything in my mouth, a slap can feel as good to me as a tickle and i have always sought sensory experiences. As a child i was always the one who jumped in the pool fully clothed, "fell" (jumped) into rockpools at the beach etc. As an adult i still find my tactile desires to be overwhelming at times; i last swam in the ocean in January 2001 at the beach in Aberdeen. The sea was 4C and i was almost swept away (luckily i'm a strong swimmer) i just could NOT resist my swim (fully clothed, i begin to paddle and then cannot stop).
Anyway i'm here today because of DD.
Today was probably the worst i have seen her, though she's certainly had similar episodes before. We went to the adventure soft-play today to meet friends. When we arrived the son of my friend, who is the same age as DD, had just that second fallen from the slide, banging his face and bloodying his nose. I rushed to take my friend's DD, who is still a baby, from her, so she could hold her DS, who was in the arms of a staff-member but clearly wanting his mummy. We stayed close by our friends. Her DS was crying and screaming with pain and DD, who was in the meitai on my back, just had a total melt-down. It is always noise with her, and specifically both broad-spectrum noise (like the haridryer, hoover, blender) and loud shouts from others of anger or distress (laughter doesn't bother her). For the next 40minutes she clung to me (like i could have stood up and let go and she wouldn't have fallen, she was gripping me so hard) and screamed and sobbed and, and this is what scared me most, refusing to open her eyes. She kept telling me she couldn't when i asked her to. She kept her head tucked down against my boobs, wedged hard against me, eyes screwed shut, limbs wrapped around me, shaking with fear and screaming with distress. My top is still covered in snot and tearstains.
After 40minutes (literally, and the injured kid was back playing within 10!) she calmed down and went to play, but then my friend's DS went to climb back to the slide, the staff had asked us, after the accident, to prevent him going up there alone, and his mum was getting lunch for her and her littlies. So i climbed up the frame to bring him down, he cried as he didn't want to come down, and DD melted down again. I had to have a staff member hold her while i brought him off and it took her another 20-25 minutes to calm down again, and even once calm she remained VERY fragile to noise from any other kid (which you can imagine in a soft-play area was fun!). I just held her really tight (at her sobbed request "tighter mama, huggle tight!") and shushed her and told her it was ok and tried to be normal with her without trying to persuade her to do anything she didn't want to (like i asked did she want to go play and respected her "no!").
The worst bit was that there was a bunch of mums at the next table who remarked loudly firstly that if they had a kid "like that" they wouldn't bring it out and secondly that it was to be expected because i still baby-wear (she was in the meitai because it's often hard to get on the bus with a buggy) and have obviously made her the way she is by mollycoddling. I felt so demoralised by the time we left!
I know this isn't anything compared to some of what your littlies go through, but i don't know where else to go to find understanding. She was so so terrified. It wasn't "fuss" - she was shaking like a leaf! The only things which seem to help are me holding her very tight, and me covering her ears. She still cries when i do those things, but it is crying it out, rather than screaming in rising distress, iykwim.
Anyway i don't know what to "do" about it. Or if i should do anything. She is an excellent communicator, she seems to empathise well, she can generally be reasoned with and she doesn't tantrum often. She's just extremely sensitive to certain sounds. I very rarely raise my voice and when i do she doesn't react like that. It is worst with her wee friend's noises and cries, but she can get distressed by other kids at times too - sometimes she copes fine and other times she cannot deal at all. My parents dealt with my quirks by allowing me them when it was safe and watching me carefully if there was a risk. They just took spare clothes to the beach and only took me there on a receding tide basically. So should i just continue taking her sound aversion into account? Or should i do something about it (seek medical help? What, i mean i just have no idea!). She is fine with loud music.
I'm worried mainly about how she will cope when i have #2. What if the cries of a sibling are a trigger?
Thanks for reading this, i don't know if this is the place for us at all, but i'd really welcome your advice if you have any.
Bx
Bx it does sound like she has some issues with sound or auditory processing. One thing is maybe take her to an OT? Occupation Therapists are the ones who deal with sensory issues, and ours is amazing, talking about how to cope in situations where you have to cope and teaching them how to calm the storm so it doesn't get so worked up. Some children do "outgrow" sensory issues, in fact most children do have some sensory issues. I think that is normal.
I know that there are strategies in dealing with auditory processing issues. Our major issue is artificial noise, so in enclosed shops... or situations like that. We have noise reduction headphones for Matilda and have yet to venture out into shops. I took Matilda to a movie because she was desperate and put the headphones around her neck, for the first time we made it through a movie, and she pulled the headphones up a few times when things got too much and regulated it herself. It was fantastic to see her make it through a movie for the first time.
Personally... as far as siblings go... it was hard at first. When Jovie cried or screamed, Matilda would lay on the floor with her eyes shut and her hands over her ears. I had to teach Matilda how to cope with the baby crying by putting on a CD I'd made to train the dogs and train her! I would play the cd and ask her what she wanted to do, I set up a "house" on the verandah so she had some escape away from the noise or stress. I also made sure she knew that Jovie was okay. She came with me to the LC appointment to find out what the best thing is to do for Jovie.
:hug: Bx. I know how hard it is to take that first step to saying these things out loud. I hope you are able to get some answers.
Christy, that is fantastic news that Matilda has had this break through. Your patience is obviously paying off. I hope things continue to get easier for you :hug:
I'm yet again wondering if I'm doing the right thing with the assessments. I'm a little scared that just one week after sending in the questionnaire we have been given appointments - the full lot, paed, audiologist (which I am sure won't find anything), physio, OT and then the conference. The first two are booked for while we are overseas in May so I will have to try and change them on Monday. I wasn't expecting it to happen so quickly and now I'm worried by what that means - did he sound so bad from the forms? I am still having this internal dialogue about a fuzzy line between bright and ASD - I am beginning to think that there is so much cross-over it's impossible to tell where one end and the other starts. I was telling a friend who also works in IT about the assessments and he said that he believes he has ASD traits himself, as do most people he works for. So am I over-reacting and would we be better off not going through with this? I just don't know. It's so hard.
Bx - Christy has given excellent advice there. I think the first stop would be an OT where they could assess and give you strategies to work on with DD. Goodluck hon. :hug:
Mel - thats a tough one hon... I guess you need to weigh up, are there any negative consequences of going through the assessments, and do they outweigh the positives?
FWIW, I'm sure the specialists are experienced with kids on the 'border' so to speak, so although he may have traits, he may not be given a diagnosis as such.
With the quick response after putting your forms through - I seriously doubt it was because they thought there was a severity of condition - they were probably just organised and efficient for once! :lol:
In my experience I guess I don't regret getting Aidyn assessed, as I wouldn't have known where to begin to help him in some of those problem areas. He is close to being borderline too, given that the first group of specialists didn't pick anything up - apart from delayed speech & some motor skills issues. And his speechie and psych have pointed out that he is very high functioning. But I'm so relieved we did get the diagnosis as we have been able to get help and direction in those areas he needs, and he is just thriving... doing so so much better. And I think *I* am doing a lot better. I don't feel so uncertain and stressed anymore, I'm relieved I have been able to get him the extra assistance he needs in those areas (speech, socialisation, behaviour, fine & gross motor)...
Oh, just want to share... Aidyn has always been behind on fine motor/drawing skills - he has been really only scribbling up until late last year.
Well yesterday he bought me home a picture from school... It was a person with a head, hair, with eyes (and pupils), ears, mouth, nose, and legs! He said it was me!! And there was a smaller version next to it, which he said was him! He did all of it by himself! I was (and still am!) so proud and excited... :D
Oh Ambah, that is absolutely fantastic. It sounds like he's going to really well with school this year.
Thanks for you advice hun.
Hi,
My son was diagnosed with mild to moderate Autism by a child psycholigist on friday. I always knew he was different from the other children, even as a baby. He reached all his milestones later than the other children and never played like them. When he reached 2 1/2 years old he withdrew himself with playing with other kids. He just turned 3 in december and he spent his whole birthday party playing by himself and not with his cousins. He says a few words, counts 1-10 and is obsessed with cars.
I am now in the stage of crying all the time and I am really mad because I don't even know what caused this. I really don't know how to deal with it at all. For the longest time I was telling myself he was just slow with things and that he would just catch up as all kids develop differently.
I have a great husband though who is trying to deal with this too. But unfortunetly we are getting very little support from anywhere else. Our parents are 2 hours away but it is hard to feel the support from that distance. Our siblings are in melbourne and are not supporting us at all. DS is very anxious around new people or places so I am organising some individual based therapy at home. Maybe eventally we can go to some kind of playgroup or something where he can socialise. I have just moved to the mornington peninsula area of melbourne and know nobody. I did begin joining various groups but due to DS problems I have been unable to meet new people.
I try to look on the brightside of things, like he's very loving and happy etc. but it's a hard thing to accept that your son will never be like other people.
I am glad this forum is here as I need to vent and get to know others going through similar circumstances, so thanks for being here. :)
:hug: welcome Wednesday. Its so hard to hear those words and hard to digest and think "so what now?" I found myself totally lost when we are trying to figure things out.
We had an OT appointment today which went really really well. It was our first one with the new OT. It was so refreshing after hearing that its us, or that there isn't such a thing as sensory integration disorder etc etc. I brought all our assessments with us, and we sat down to chat and Matilda was running around going nuts with all the gear in the room. We were talking about what I've been told and we hadn't even gotten to the physio assessment or the vestibular stuff and she said "without having to even read these, she's got a proprioception deficit and is vestibular seeking. I'd been there 5 minutes and she'd picked up some of the major stuff thats going on. At one point I'd said to Matilda to not hang off of something and the OT said "This must be so frustrating" and Matilda started her "flapping" that I'd noticed and been scared about and the OT said "thats not flapping in the ASD way, that is proprioception seeking" and its always the same hand she hits when she flaps and the same way....
Its fascinating all of it. She doesn't necessarily think that Matilda is Asperger's, but she said that its worth keeping in the back of our minds because she said she could be wrong (first person to actually say this) and even with a diagnosis of ASD than she'd be doing the same thing... so I'm okay with that today. I'm happy to see someone who seems to know what is going on without me having to tell her exactly what is going on and how to work with it.
Sorry Ive been AWOL...Ive had a shiat of a time with Wilehlm since going back to school :(...he now tells me he hates me and has been kicking and hitting me for the last few days.
tonight I flipped...I feel so bad and horrible but I snapped and slapped his face while he was going off at me...I dont know why I did it....I feel horrible...just horrible. he was flipping and kicking me so hard that I picked him up...took him to his room, threw him on the bed and told him I hated him and asked how he liked it.
I havent stopped hating myself or crying since...he wont come out of his room...what have I done!!!!!
Sorry have to go...its to much atm
:cry:
oh maz hun... wanna talk? I'll PM you my number.
You are a fantastic mother, we ALL have these moments... especially when all we seem to be doing is trying to stop these moments from happening. I have found times when I have wanted to do the exact same thing to Matilda.. it happens. BUT you have done at least 20 things today to let him know you love him, I know it!
Oh Maz, massive *hugs* honey.
Don't be too hard on yourself. Christy is right... we really all do have moments like this. I have lost it at Aidyn before in a similar way.
Its really really trying when your threshhold is constantly pushed like this... its so understandable that you couldn't cope with it for a moment there. Its just a horrible place to be in. We know you are doing your best babe, you are a fabulous mother!!!
I hope things are a little bit better for this evening... if not, I hope things calm down soon.
Huge massive hugs to you. :hug:
Well girlie girls, how is everyone going?
We've been going to OT twice a week. I found it so extremely life changing for our house. It was so much of a confirmation that we are on the right track, we are going the right way and doing the best for Matilda. It was hard to watch for one session how hard she made Matilda work, but we are seeing benefits already. Its bloody expensive to go twice a week and do swimming classes without having the big diagnosis.... its $200/week. Man... I wish we had private health insurance before the diagnosis of SI. I guess we could try to get it before an ASD diagnosis, but even then, the gov $$ would help more.
This is our last week of twice a week though, *whew* KRudd's $$ we saved for OT is going far too quickly! We saved all of Matilda's $$ for OT expenses and swimming lessons, and this week it runs out. I thought we'd get at least 4 months out of it :rolleyes:
Hi all, wow lots going on in the past few weeks with our gorgey kids!
Christy - Sounds like you found yourself an awesome OT! I always say OT saved us! Not just the difference in Xander but in the understanding of where he is coming from - it is my favourite place to be with him because he is "at home" What you need to do now is get to medicare and get your Autism specialist refunds organised. It is quite a lengthy process but basically you get about 80% back on OT. Pm me if you want details
Maz - we have all been there! How is it these kids know just what buttons to push that hurt us so much. hugs to you, hope things get better.
Wednesday - welcome to a place where you can feel normal at last, You can chat to us about everything you and your son are going through and we will understand just where you are at! As for blaming yourself and looking for reasons, don't. My SIL (her son and daughter also have asd) have done our fair share of beating ourselves up and searching for connections/causes etc but these kids are who they are and they are infinetely special and unique and although they experience things differently to us and drive us nuts what would the world be without them. There ar lots of famous people who have autism and have changed our world for the better. Something I am coming to terms with this year is not forcing my ideals on DS for example for the past 6 yrs I have pushed him to socialise but he doesn't like it and now I have come to terms with it and don't eel like I am neglecting him etc. What is great is if you can get together with other parents of kids with autism and the stress there is a lot less. Check out aspect for lots of insight into people with autism - really interesting to speak to people with autism and see how they percieve themselves and their diagnoisis.
Mantaray - you sound just like me when we started looking into assessment with DS. I was worried that they would turn around and say nothing is wrong I'm just a paranoid parent and I was worried that they would turn around and say - yes this is autism - and then where would we be. Argued constantly with DH about what difference it would make etc. Anyway on the other end of the stick now - I wouldn't have it any other way. Having the assessments done gives you insight into where you can help. Even if it turns out to be "traits of autism" "PDD" "sensory processing" it gives you somewhere to go and work on his issues and help him. I know it sounds harsh but you are better off to go in there and present the worst of the worst behaviours/experineces you have had because if you water it down now and he is classes as borderline or not on the spectrum and then things worsen later on you will not only have to repeat the whole process again but also you will have missed this vital time to work on social cues, OT fine and gross motor skills.
Hoobly - welcome. I agree with Christy and Ambah an OT is a great place to start to desensitise and if...if they pick up other sensory problems in the assessment well it's all the more info for you to help your daughter out of these situations. We are in a situation with a strong family history - SIL two kids are dx and our son is dx and I was recently talking to the OT about my DD quirks that are arising. she agreed with our family history it would be impossible for her not to have traits but having picked them up we can work on them with her. Don't forget also that autism in girls is much different to the stereotypical reactions and assessments we see in boys. Sue Larkey and Tony Atwood have done some assessments on this I believe and Christy would have some great first hand info on things to look for.
Well after all that gushing I don't really have the energy to write about Xander's school issues only to say blah blah blah. I hate school and I hate other kids who go to school :rolleyes:
Gotta go sleep, keep well and stay positive
Thought this might cheer us all up as we all sound stressed out at the moment. What are some of the quirky/funny/literal things your kids have done.
Today I told Xander to take his shoe off and put his socks in the washing basket. So he took off one shoe and walked to the laundry, came back into his bedroom and took off the other shoe and then walked back to the laundry. When I asked him what he was doing he said you told me to take my shoe off and put it in the corner and then put my sock in the laundry basket - you only said shoe not shoes!
When we were doing his ped assessment the Dr told him to jump on the scales - so he did - jump, jump, jump
The other day DH and I were having a joke about lettered cupcakes spelling out Happy Birthday. DH said to DS you didn't have to "P" on the cake. To which DS cracked up - then abruptly stopped laughing and in all seriousness said " I don't get it"
There are so many other quirky things he has said that have us all in stitches, including him - I will try and think of some more.
I just quit my job... I took one with less responsibillity closer to home so that I didn't have to think so much. Part of me is happy, its easier, and I'll get to train dogs again, but part of me is sad. I don't want to blame Matilda, but if my head wasn't on her all the time, I could do the other job happily.... I would never say it out loud.... but I'm sad about it too. It was nice being one of the top nurses in the country if only for 3 months...
Christy honey......breath babe. As terrbile as this sounds......things may work out more then likely for the better now that your more in control of the in's and outs of Matilda's days.
I had this discussion withone of my friends who son is almost identical to Wilhelm. We both asked each other if we can remember our lives before the spectrum? If we can remember not to over annalyse everything, remember what it was like to be able to just go without having to preplan....remember just doing for us. I had a really good position with Westpac before I had NIkolaus.....I went to go back inot it when Wilhelm was 6 months old and his reaction to me going to the interview was more then enough for me to quit before I started. :(....I lost myself somewere there for a few years.......and became this person today that I dont recognise anymore. Dont lose yourself hon..... still keep doing things for you and make sure that yo take time out for you. :hug:
I have a horribel start to the school year :( just horrible. I havent had the energy to post it in here....I felt very ashamed of myself for how I reacted. Wilhelm has started in a new Special needs class 2 times a week that the school has devised as of this year for SN kids...great idea BUT different and wilhelm knows whats different. He became very agressive and abusive physically. His teacher said he could bring his DS to school to which he knows I said no and he went balistic at me. I got down to his level to try and calm him down and he grabbed my plait , yanked me down and kicked me in the face twice before I could push him away ( I have now cut my hair cause of it:( ). He told me for the first time he hates me...not a word that is common from WIlhelm and I know he ment it because he has a very good understanding of words. I picked him up and threw him on the bed, told him I hated him back, slammed the door behind him then melted on my hallway floor and cried. All this on my birthday. THEN on the thursday this program is run the kids in it are ment to go down the street to buy food to make for lunch...WIlhelm had a spaz at school and kept yeling telling them NO. I spoke to his career and she let me in on a secret that would cost her, her job.
Last year they use to go down the street on a thursday (SN kids with career's)....Wilhelm loved it as they would stop at the bakery and share a bowl of wedges and get a drink. His career broke her leg and was off for 6 weeks...Wilhelm had started acting up and hitting Vy in this time...I never knew why...until now. The new career and her other career friends would order themselves coffee and make the SN kids sit at another table without givng them anything! Wilhelm told me he asked for something and was told to SIT and SHUT UP! Wilhlem doesnt lie...great trait of an autistic kid but OMG I started to cry. It explained so much! All the hard work we put into getting him down the street was shatted, I use to take him there and he hated it towards the end of last year..grrr...So lets just say when i get acertain 'Amanda' and Fran' in my clutches all hell is gonna break loose!
ANyway.....Wilhelm is much better these days...since Jed and I changed the boys room and have made a little lounge for them...big beanbag, his egg chair and the t.v and playstation facing away from their beds.
Sorry that I didnt post this before...its been hard even doing it now. OH and now I hear a little boy yelling for me...thanks girls
My 3.5yr old son (Twin1) is off to be have his assessment done in April,. 6mth waiting list to see a pead. He has had his hearing speech done, his level of speech is that of a 2 to 2.5yr old.
He is not coping well with kindy nor well with one day at day care, teachers and admin of day care have actually said they think he may have aspbergurs. Hence the pead appointment.
He doesn't cope well with change and when he throws a tantrum or something doesn't go his way all hell breaks loose, things have to been done his way (kinda like OCD) if he isn't given the right drink bottle his tantrum will last for over 30mins until he has worn himself out. He prefers to sit on the outter circle at kindy/daycare and doesn't really like to join in much .. Hope i get some insight to all this soon.
Welcome MBP Mum :hug: its hard to hear that about your child. Matilda didn't cope at all in a day care situation, but in family day care went really well.
Maz... WT??? How disgusting!! They should be fired for that! URGH! That makes me so angry. :hug: Mummy you are an amazing woman. I know that fight with Wilhelm has hurt you so much, and you lashed out. But you know at that moment he may have hated you, but he doesn't all the time. He loves you. OKay? Please don't beat yourself up for it :hug:
I have a story for you... we were doing some of out "floortime" that the silly paed told us to do. Where its one on one with Matilda & me. No TV, computers, other people, etc etc etc. So we were sitting and Matilda started saying "Mummy, are you ever going to have someone take me away? Do you not want me anymore? Sometimes, do you not want me to live here?" I nearly lost it, but I stayed together & said "Matilda, I love you so much. Sometimes I get frustrated with you and angry with things, but I don't ever want someone to take you away from me or you to not live with me until you are much older." Then I sat down with tears streaming down my face while she kept playing. I've said those words in anger to her... maybe 6-12 months ago, but I did. And I never resolved it. I was so angry I told her I was going to call someone to take her away because I couldn't do it anymore. She would have to live somewhere else. :( God I felt like utter crap.
But the thing is, this is a way we can teach our kids about speaking out in anger, and how people get frustrated, and how we should have handled it better than we did.
Anyway....
Thank you. The director at Day care suggeted he may do better in family day care. She said she will look into it for me.:
Welcome MBP Mum its hard to hear that about your child. Matilda didn't cope at all in a day care situation, but in family day care went really well
Hi All. I am a newcomer to this site. I will first say that for the first hour I have spent shedding tears that I have held back for so long. I felt so intune with everything written here ... all your experiences are simillar in some way to mine and for once I dont feel alone. I dont feel like I am the only one facing the battle of having a son diagonsed with possibly aspergers. The paed wont give us a definate diagnosis as he thinks he may be borderline.
For many years I blamed myself ... maybe I created this ... If I had of been a better mum he may have been different. Its only through reading your stories I have realised I did the best I could given what I had.
My son Oscar is now 5 years old and has started prep. A month in now and I am starting to feel the crunch. He is such a loving and gentle child, very bright but struggles socially. His speech is delayed and after speaking to his teacher his motor skills arent that sharp either. But he can read already and loves mathematical things.
I watch him at school and its heart wrenching. You can see he wants friends but has no clue as to how to make them. He really tries he does ... its when you see that disappointment and that sadness in his gorgeous face you break into a million pieces. It takes everything in me to keep it together.
I dont know what to do really everyday is a struggle. He has his obsessions which can go on forever and loves routines. If only life could be so planned he would never falter.
Just want to say thank God that you are all here. I feel at home for a change ... there are people out there that know what I am going through. I have had a challenging week and crying and reading this forum has done the world of good.
You all are fabulous parents.
Christy - I'm so sorry you have had to put your job on hold! We are doing the same thing this year and to be honest it was driving me nuts but I'm getting a handle on it. The time will come when we can get back to where we want to be! Maz is right it is still important to do things for ourselves. As for your moment with Matilda, Xander says the same thing about being taken away or being "out of our family" and yet we haven't (that I can remember) mentioned something along these lines. Is it possible that rather being drawn on what you have said it's a common fear they share?
Maz - what you said about how much you change the way we do things to accommodate them is so true, I didn't even know I was doing it until Ds was diagnoised last year and DH and I were at each others throats all the time over routine issues DH refused to comply with. I have to say Xanny's dx was the best thing for our marriage in a long time! Now we work together on helping Xan cope and giving each other Xanny free time.
I am so sorry you have had such a crap start to the year. Wish there was more I could do for you.
MBP - welcome! keep a diary of all the behaviours etc you are noticing and are concerned about so when you get to your ped you are armed and prepared. Hope it all goes well and that you can find a daycare solution. We were very blessed in that our man took to daycare like a duck to water, they were a privately run centre and had a very good routine so Xander thrived. Perhaps rather then looking for a new place they could make some changes to their environment and routine to help him relax. Things like have a labeled drink bottle for him. Allow him to have a time out space. Use visual cueing systems and a visual routine/schdule for him to follow?
Nicky C - Welcome, I'm so pleased you are feeling at home, it's great to find people that understand where you are coming from isn';t it. Look forward to sharing the jurney with you.
Saram ~ Thank you for your relpy and ideas. I will start writting things down to take with me, Kindy have started a behavioural book for him. Good points and bad points he has done through out the day. He is only going 1/2 days at the moment as he can't handle being there all day. (Or they can't handle him)
Christy ~ Thank you for your reply also. I'll let you know how the family daycare thing goes, he don't handle change to well, so it will be intresting if we can get into one.
Have a wonderful day everyone :dance:
MBP_mum - yeah change is painful....
Nicky- Welcome! :hug: yep... I went for years being told that I was a bad parent... so its lovely to come somewhere that people understand experiences and feelings associated with parenting these super kids.
Honestly though.... sometimes I don't feel like they are super....
Matilda has had a high temp for almost 24 hours now and is relatively normal! Strange... No signs of sickness, just the high temp. She fell asleep on the lounge and *whammo* wee'd all over... litres of wee! She woke up and had wee in her hair :o so I hope the smell comes out. I put her in the shower and ran around like a chook trying to get the seat covers in the wash and the cushions on the line to air out. Too bad it went through the cushions onto the base... which is totally saturated. Worse is, she's totally humiliated and embarrased about it. Poor thing.
:dance: He had a great day at kindy today. They one put him in time out once today. :dance: He even looked happier than usually when i picked him up, in his kindy class there is only 10 kids. So i think it is easier for him to cope with. I think to myself i just can't wait to get to the pead appointment, if he isn't diagnosed with anything that awesome, but if he is there is help out there for him/us.
Here are a few signs that had got me thinking why he needs to see a pead.
He has these small bakugan balls and cards they have to been in his pocket all the time, if he loses one all hell breaks loose, he will search for hours crying and distraught, he will wear himself out to the point where he falls asleep, he will then wake up looking for them.(no matter how long he slept for)
I changed his pillow case to a new colour, it was the wrong thing to do.
He has to wears shorts with pockets.
He won't share his food, his drink bottle is his.
When they have a specail treat we go to hungry jacks, and has a happy meal he is used to the yellow box the meal comes in, this day he didn't get a yellow box as they didn't have any, so it was put into a bag. Worst thing ever, he was so distraught that is wasn't how it was supposed to be.
He likes to play alone a lot, and always sits in the back corner of the kindy room, plays alone in the playground.
Will occasionally interact with other kids.
Has difficulty calming himself down after being upset.
He put his hands overs his ears and curls up when his baby brother cries, i am vacuuming or the kids in kindy are singing.
His speech as i said is that of a 2 to 2.5yr old
He hates certain food textures and often gags on it.
Hates having dirty hands or food spilt on him.
Avoids eye contact with anyone.
Gets very tired quickly.
Loves my soft dressing gown loves to go to sleep wrapped in or or sits and watches TV with it wrapped around him.
These are just a few of the things i have written down to take to pead with me. Thank you if you got this far. :redface:
That list is perfect. It identifies a few areas that are specific in the diagnosis of ASD
OMG you could have blown me over hon!!! this so sounds like my guy!!
Wilhelm ONLY wears shorts...if its 5 degree's its shorts and t-shirt......no jumper no long pants in the good old Vic winters near the snow land. and yes have to have pockets!!!
We use to have the same problems with Macca's...my solution was to leave an empty macca's box in the glove box, just incase and it worked for us.
OMG I just wish I could sit with you over a cuppa and chat about what yourve just posted MBP! The colour thing....yes went through that and you know what...I know that the early ed's try to make you get them to stop and change and get them to do things 'socially correct' but god is it really that bad to leave a red shirt on a kid instead of putting a blue one on???? I think these people in the early ed programs mean so well...but they dont see our kids everyday and only hear and see the bad things....they dont see the special look they give you when they think no one is watching.....the joy you get when they do come up to you and hug you out of the blue. Ive learnt that yes, we have to get them to adapt to things for normality but they are also individuals and not animals that need taming. That is my biggest grip about a special needs kid...i somethimes feel like I need to have a whip and beat them into shape....I also feel very much under the microscope as a mother which annoys me no end. God dame it...we are trying our best to do the best we all can...why do people think we are trying so hard to work against them? arhhhhh
Christy - thank you honey :hug: Matilda and WIlhelm sound like a good couple ;) as WIlhlem is known for telling me things 6 months after the fact. He told me in the car again today that im never aloud to push him as it hurts his brain and it dies...:( ...get some glen 20 hon...it gets rid of wee smell ;) and when Wilhelm gets embarrassed over things like weeing and poohing himself...I jsut say to him...say by by naught wee.....you didnt have to come out and surprise me..and make a silyl song about it...Just a thought thats all babe :hug:
Nicky - welcome to the mad house :ROFL: this sounds so stupid...but I feel like I could walk around naked in here :o and everyone would be cool with it (and me naked is a VERY scarey thing). Make sure when you feel crapola that you come in here and down load (says someone who runs lol)
Sarah - how is the DS going? Ours has taken a back seat to friggen lego again...i should be happy I hear you say...not when I keep finding lego men heads in Mateauz poohy nappies hahahhahah
SO knock on wood..no wet bed for 2 weeks....since we changed the room around things have been ont he up (thank good) I should take a pic and put it in the gallery to show you guys 'his space'..jed says he's goong to move into it their room...oh I wish..a Qbed for me is my dream..hahaha
OK written a long enough novel...going to go do some stress release...good old sewing :)
be kind to yourselves
MBP - great list. If you want some ideas for now check out sue larky's website and tony Atwood also for some good strategies.
Maz - DS isn't working very well at the moment which has lent to a few meltdowns, DH is hoping to have fixed it this time but I have to say he is back mainly to pretend mode - hmmmm. I am OVER pretend mode - am I allowed to say that, it sounds horrible but I am OVER IT.
School sux - have I mentioned that... Luckily got there just before he went nuts on a kid who 'stole' his Math game for homework. Went in to talk to the teacher and she says "did he take it again after I spoke to him" "Yes" Xander blurts out in snotty sobs hiding under his desk. So teacher goes out to talk to child and returns to tell Xander that he has to take the other game as child has had that one already and that's why he kept taking Xanders. Xander says "I know he has had it but you gave it to me" "oh well" she says and walks off with a pat on the head leaving me to deal with this little boy who has a very set idea on justice and what is right. It took about 2 hrs for him to pull himself back together again and much trampolne jumping - poor little thing and then we had to play the dam game tonight and it set it all off again. Grrr
Christy - Hope matilda is feeling better soon.