Aspergers/Autism/Sensory Integration Chatter #2

[lestyrox]

Oh ladies reading your posts is so helpful. You're all saying what i'm feeling. I am SO scared about the future for Ethan, especially what school will be like. He too has a hair trigger temper (i call him my little fire cracker ) and is SO protective of his toys. At the moment i'm really struggling with his not sharing. His poor little brother just wants to play with him but as soon as he gets to close to Ethan's toys WHAM he pushes him or hits him straight in the face. Its nearly impossible to do activities with both of them. Even simple things like painting or play do turns into a fight. I feel like i either need to keep them at seperate ends of the house or buy two of everything! I would really like to give Ethan some more one on one time, i'm looking into starting some sensory activities for him but i'm really struggling to find activities that both boys can do without the screaming and hitting... any ideas?

Tan- YAY for finding an awsome teacher!! thats so great.

I've been thinking of putting Ethan in day care 1/2 day a week just to expose him to other kids and also to be honest i would like some one on one time with his little brother. But i'm scared. I just don't know how he'll cope. He's so anxious and gets overwhelmed easily. I'm worried he'll go balistic if someone touches his toys or he doesn't like an activity etc etc. The centre alrteady has one little boy there who has asd so i know the staff are familiar with it which is great.... i don't know. How on earth do you let go ladies? The thought of putting Ethan in someone elses care terrifies me..will they know his quirks?, what he wants? how to settle him???

Anyway Ethan has his blood test in the morning EEEEEP!!! i am dreading it. Hubby is buying some of those ELMA patches today, i'm hoping they will numb his little arms so the experience isn't AS traumatic poor little guy....anyone else used these?

[christy]

lestyrox, I hope he did okay for those blood tests. I now go into those sorts of tests holding my breath, and then exhaling when she gets her ice block at the end.... its just something to endure...

Well... I'm taking sometime to write down whats going on here now.

Yesterday I phoned DH prior to our "hand over". I work Monday late shifts and start at 5pm, so I don't see DH on Monday's at all. I phoned him on my way to work and he asked about Matilda. I stopped and said "You know what? She's been amazing today. We had one moment of hyper arousal when her MP3 player arrived and she settled really quickly after that." I couldn't believe the words coming out of my mouth.

Then this morning, as we were getting ready for school and dropped off Jovie and Matilda, I thought... OMG she is being a fricken angel!!! She is soooo goood. I've never had her be this well behaved little angel before. So I dropped her at school and told her how proud I was and how happy it made me that she was being so good.

Then DH & I had an appointment with an RDI counsellor. Its someone who does behaviour help for children on the with our sorts of issues (ranging from brain trauma to sensory issues). Anyway, I said to DH that she was amazing, we got there and the counsellor said "Wow... I went through your paperwork last night, and I'm amazed. Matilda is almost the most severe case of sensory issues that she has ever dealt with I asked her "um, are you happy to work with us?" and she said "Yes, I would love to work with you and see the progress you have made in the past year". She was extremely encouraging and was all about natural and instinctive parenting for children with our issues. She said "You know these children refuse to read the book, even more so... they will be the reason you write one"

So, I left encouraged. Got home and MIL dropped the girls off after school/day care as I only got home at 3pm and once again, Matilda's behaviour has been amazing all afternoon, dinner, bath , bed! I'm just astounded. We haven't ever gone 1 week before without a massive meltdown, and you know what? We have gone 3 weeks now and her behaviour just continues to improve. Her OT has said that she is almost able to completely self regulate her emotions now . In June/July last year, Matilda was still screaming 3 hours a day and escaping and running and we would have to physically restrain her.... and now we've gone 3 weeks without anything other than a "normal" tantrum???? WT?

Now... after all that excitement on her progress, I will talk about the things she has picked up in the meantime to regulate herself that aren't "socially" acceptable. Last week Matilda started sucking her thumb. For the first time. She has been biting her nails for over a year now, but now she bites them until they bleed. She is obsessively picking her nose. If there is the slightest niggle in there, up goes her fingers.... She is also flapping more, and doing other "autistic" things like rocking etc, will not come out of her room when we have visitors etc etc etc... but you know what? That helps me feel better about a diagnosis. It helps me feel better that I know that she has issues, and its okay to accept them. I can deal with those flapping, and thumb sucking, and nail biting things when I don't have to deal with 3 hours of screaming and physical restraint. Its much easier to handle. I dare someone to say something to me about it .

[MantaRay]

Wow Christy, I am so, so, so pleased to hear how great the improvement has been with Matilda. That is really awesome news. I really can't imagine how it must feel to have not had that stress of a meltdown for 3 whole weeks. You must feel like a new woman!

I know that you will continue to have challenges, but I'm glad that at least you are getting a break. And I know that you will continue to handle things with love, strength and courage as you always have

[Lulu]

YAY for Matilda! Everything you have been doing has helped her get to this point so HUGE YAY for you and DH

Mitch is on and off at school, but getting used to the routine a little better. He needs help focussing, and with his anger still.

Love his teacher - she told me on Friday that if by Tuesday he can keep up the good work concentrating he gets to sit on one of the ponies (preps don't ride till later in the year). She will take a photo and blow it up to make a puzzle. Each day/week he holds his focus and holds back the aggression he will get a puzzle piece. When the puzzle is complete he can have a ride with his older buddy leading the pony. This teacher really gets my boy

We have been talking each day when I pick him up, she has contacted his kinder teacher and invited her to the school for a chat (kinder teacher is very interested in the way they teach there).

He has gotten to know the other teachers there rather quickly , and despite his Mitchness (!) they just seem to adore him - one loves talking to him and was very proud when he apologised to another child for hitting without being asked. Feels so good!

[mrsmac]

That's awesome news Christy and Lulu!
Christy I envy you so much the no meltdowns, we seem to have one after preschool each time and sadly its in the school playground in front of parents of my class. I have been in tears afterwards cause i don't want people to think I am an incompetent teacher because I can't even "control" my own child. DH is now trying to pick him up and take him straight home rather than another mum bring him over to the playground to meet me when the bell goes (the preschool is in the school grounds but finishes 20 minutes before school does)

My SN boy in my class is going really really well in class but not coping with the playground very well, because other kids annoyed him in the 1st week he has become known as the "fighting boy" which has upset his mum a lot. I feel like I am pushing s#it uphill to get help for the playground cause the boss doesn't care so I am trying to sort out everything all the time.

[Lulu]

Oh Mitch used to go nuts if Nik would pick him up from kinder or a friends house. No problem if I did. No idea why...

The playground is the BIGGEST issue we have too, they are handling it well. Sometimes he likes to walk about with the teacher on duty.

[tan32]

hi ladies i have to post today as i am fighting back tears and feel like running to school and picking Hamish up.
He had two incidents on the playground this morning, the first was just an accident another boy ran into him and he hurt his lip but we had lots of tears and cuddles. Then he went back to play and was happy again. The bell went and i walked over to his classroom and was looking for him , he wasn't there, when i turned around there was my little man with the teacher in tears.He hadn't heard the bell as he was busy playing , when he turned around the playground was empty and he was in tears, he was crying so much and had worked himself right up, it took a good 10 minutes to calm him down. The teacher asked him what was wrong and he broke down again.
He eventually told me he was scared he was lost, we thought he was upset about the fact he may get into trouble (he didnt)
One night he saw the add on telly for smoking where the little boy gets left by his Mum and since then we have had nightmares and numerous breakdowns over my leaving him..
I left him at school today after he stopped crying and we had explained he was safe but my heart is breaking

[mrsmac]

Oh Tan , that must be heartbreaking for you.
One of my class last year was quite clingy and if she was having a sad day her mum gave her one of her hankies with her perfume (mums) on it and she used to hold that in class.
DD2 was shown that smoking add at school and had nightmares cause she said the little boy reminded her of DS.

[Cocolove]

Hi
Im not sure if i belong here but Lulu suggested I pop my head in.
My DD2 who is 5.5years old is currently being moniterd/assessed for ODD/ADD & they claim she may be mildly autistic im having trouble agreeing with the last one.
I am not sure if i will be happy to have a name for her behaviour or if ill be shattered.

[mrsmac]

Hi BP, the advantage of a "label" is that it comes with funding for a teachers aide etc which really helps. Sadly its almost impossible to get that without a label.

[Lulu]

Hey BP. It might help if you have time (har dee har) to have a look right back through the thread. I wasn't sure if I belonged here either but one thing I knew is that DS's behaviour can be so extreme and I was at my wits end.

I don't know about the label thing either - some days he leaps forward, others I'm just at a loss. He has been diagnosed with Sensory Intergration Dysfunction and i agree with that part, but an OT said some other things I felt were ridiculous.

Now DS is at school I am going ahead with a Paed specializing in Spectrum Disorders - if only to gain a better understanding of my little man.

At the very least, in here you will have sympathetic ears from those who know how hard the 'bad days' can be xoxoxo

[*Efjay*]

Hi ladies..

I think I will find myself in here more & more. Maz knows alot of the things I have dealt with over the years with Evan. We don't talk like we use to but I'm sure I will get a "told you so" from Maz if she sees this post LOL.
Over the last year Evan's behaviour had gotten pretty bad. We started seeing a counsellor to help with his anxiety problems. As we got those under control anger issues appeared. So we worked on that & then it would switch to something else. I felt like the counsellor we were seeing must have thought I was a loony. We would get a grip on one thing & I would just come back saying Yeah thats good but now we have this problem.....
Eventually the counsellor suggested I take him to see a pead which we did who had a heap of blood & urine tests done which all came back normal. The pead things ADHD is the most likely issue but I don't agree. I am really thinking its either this ODD or Aspergers (to some degree). We have an appointment with the psychologist on the 25th.

He has been ok the last few weeks. Well "ok" for Evan.

But yeah just thought I would post. I lurk in this thread enough LOL

[christy]

Oh FJ (sorry old habits). I'm sorry to hear it, but yeah... not too surprised? Things you posted in the past were like reading posts about M... Sorry I missed your post earlier.

Well... I'm amazed that we are still in a good patch. On Sunday, Matilda and J played in their room for 2 hours together. M instigated it, and they weren't doing parallel play, they were playing together! DH & I were in tears yet again about the amazing growth we are seeing. I just resigned myself I think, to the fact that she may not get any "better"? I've not looked for a cure for her, but for a way to make her life easier... She's just not as stressed.

[*Efjay*]

Had a wonderful day here... NOT...

ah the joys

[Early Kids]

I forgot about this thread!! I'm just sticking my head back in here. Things have gotten better and worse at the same time. Brendan is progressing with his speech and with that comes better understanding too and also a few less tantrums thanks to being mis-understood. He's also becoming more "quirky" in the things he does. I won't go into it too much atm, bit short on time... but some are expecting a PDD diagnosis on top of the sensory stuff (which is slowly getting better, last meltdown was about 4 weeks ago!!) I'm finding it harder and harder to parent Brendan and find myself just wanting to throw him in his room at times, which of course I don't as it would not be very productive for him nor me, but it's still hard having these thoughts. It's not his fault things bother him more than others. I'm just hanging out for that paed appt which is not until May (3 corrected)

Glad to hear that some are progressing and sorry to here some are having a hard time of it all

Will pop back in when I can (having comp issues atm)

[*Efjay*]

So over all ( I know this is probably a silly question) but do you find you have times were you think everything is ok & they must have outgrown it & then it all starts again?
Evan was fairly good over the xmas holidays, so much so I wasn't sure if I should keep his pead app. Whihch I did of course as by the time is came around school was back & all the problems started again (well get worse)
I just am lost as to what to tell the psychologist next week. His behaviour patterns change so much.
We have gone from it being anxiety, anger, violence and now him acting like a baby. Well not a baby but carrying on like a 2 yr old. High pitched whinny winging & clingy & a baby voice asking or a hug or saying he wants me. This is all new. He never use to ask for a hug. He would have thumped me one 12 months ago if I went in for a hug that was not a mutual thing. Im not sure if he is "acting" this way as he thinks it gets him what he wants or what.

I just don't know what to make of any of it.... Very confused.

Christy, Im the same as you. I don't want a "cure" for him. I just want him to be happy.
I think I can honestly say that my biggest fear in life is Him as a teenager being unhappy & taking his own life. I hate that I think that but I really think that if we can't make something different NOW he will be a high risk teen.

[Lulu]

So over all ( I know this is probably a silly question) but do you find you have times were you think everything is ok & they must have outgrown it & then it all starts again?

Constantly. Some things he leaves behind but then it comes out in other ways
You know, it's really TIRING. I just can't keep up anymore. DS just demands so much......everything

I had to pick him up from school early because he gave another child a blood nose yesterday . He goes so well for awhile, and meets the challenges, responds to the constant positive reinforcement and then this.
Most days he just WON'T do anything, he just wants to be left alone to build things all day. He has good friends in the older children, they seem to shrug his meltdowns off fairly easily and some of them seem to take pleasure in settling him down...but sheeeesh. I know the amount of time he takes up in the classroom and I feel bad for that.

It's been hard for him this week because his dog died, I understand that (more than he knows ), but I can't provide a perfect environment for him all the time. I'm so tired of the jolting screams and yelling when things don't work or go his way. Even when he has good weeks it's at great cost to me...and poor DD.

Paed appt next Wednesday.
sigh

[*Efjay*]

I guess I am lucky in that the only big issues we have at school is his lack of interest. He has very little concentration at school.
But when he comes home... Different child. His teachers think I make it all up I'm sure. Will be interesting to see what his teacher writes as I asked her to take note over the last month or so & write me a report on how he is at school so I can take it with me next week.

I think she is starting to see what I am talking about though.