Who has helped you most to get your child's needs met or

[Frangipani]

Who helped you the most. Just wondering, thought it would be good to share.

 

I would have to say my sons Paediatrician as I spent two years assessments before I got a formal diagnosis and by this stage I was totally exhausted. He spelt everything out without me saying a word, by the time he was finished I was in tears and remember saying 'you know what is wrong with my son' as prior to this neither I or the therapists would give him a label or diagnosis it was terrible.

 

Our lives changed from that day on.

 

F

[curra]

Hi Frangipani,

 

You're lucky to have such a good paediatrician! I can't think of anybody in particular who has helped me, except a friend who encouraged me to get a statement for my son. M's dx was easy because the process was started by the school, but after that nothing happened and I was left to deal with it as best I could by the professionals and the school. If it wasn't for this forum I wouln't have known how to go for a statement or to look for a better school, so it's been the people in this forum who have helped me most to get my son's needs met. A big THANKS to all <'> <'> <'>

 

Curra

[rach04]

Hmmm well that has got to be js ot as she is brilliants (got him diagnosed with dyspraxia)and very closely followed by CAHMS

[dolly]

For the past 18 mths i have had help from the behavioural team . Julia has been brilliant she has picked me up to take me to appointments given me support at kofi's review and pysch appointment , reviewed and renew his sleep plan nothing seems to much trouble . Shes been my rock

Very close second is the respite manager who my grandaughter calls nannies best friend

Edited March 28, 2007 by dolly

[Clare63]

Without trying to sound too cheesy I am going to say ........ this forum and all its members the support, advice and encouragement I have recieved here has been second to none. Thank you all. <'> <'> <'>

Clare x

[KateBall]

Without trying to sound too cheesy I am going to say ........ this forum and all its members the support, advice and encouragement I have recieved here has been second to none. Thank you all. <'> <'> <'>

Clare x

 

 

Absolutely 150% this forum. I've not been here that long but its just such a relief to know that I can come and ask for advice or support without fear of a defensive backlash or judgemental comment about how there's not much wrong with my DS and it must be bad parenting or I'm just plain wrong. No-one else can possibly understand - we are a unique club and I'm just so glad I - and my DS - can belong somewhere at last.

 

Second to that - my SENCO has not been too bad - difficult at first but I kept plugging away and she and the rest of staff including TA's and HT have been ok and even sometimes marvellous.

 

Medical profession - hopeless.

[Alli]

Absolutely 150% this forum. I've not been here that long but its just such a relief to know that I can come and ask for advice or support without fear of a defensive backlash or judgemental comment about how there's not much wrong with my DS and it must be bad parenting or I'm just plain wrong. No-one else can possibly understand - we are a unique club and I'm just so glad I - and my DS - can belong somewhere at last.

 

Second to that - my SENCO has not been too bad - difficult at first but I kept plugging away and she and the rest of staff including TA's and HT have been ok and even sometimes marvellous.

 

Medical profession - hopeless.

Yes it is a fantastic forum but I must say I had one v bad experience ... on the forum. It left me v upset .... I decided to ignore it and asked that person not to contact me again.

The info support and advice on the site cannot be surpassed

Thanks to all who give their time to make this possible

Alli

 

Hi Alli I have edited your post as some elements could possibly offend. I trust you will agree that the sentiment of your message has not been effected, and will appreciate the reasons for the edit

Regards

BD (on behalf of the mod/admin team)

Edited March 29, 2007 by baddad

[lorryw]

My sons Portage teacher from 16 years ago. She had the good sense to introduce a group of Mums whose children all had autismto each other.

One of those Mums has been my biggest ally and greatest friend. She gives me a gentle shove if I need it and a listening ear when Im down. Without her I would have sunk without trace a long time ago.

Loraine

[rainbow queen]

this forum.............without i would have given up the battle along time ago

i would have to say my sons pedatriction and just recently camhs plus my sons social worker and salt

but none of it was plain sailing..........and i think without seeing this forum i wouldnt of pushed as much as i did....

 

so this forum should take at least two 3rds of the credit ..

[dooday24]

deffinetly the forum dont know how id of carried on without u guys, <'> <'> the proffessionals r not allways listening!!!!! the only prfessionals that have listened r my pead and gp but everybody else well!!!!!!

[ellisisamazing]

My son's teacher and his classroom assistants. They took in my frightened screaming child who didn't know how to show love or express emotions other than fear and anger.

 

In return they have given me back a smiling, adventurous little boy who is full of joy, eye contact and long loving cuddles. (He still has his MOMENTS, but life is so much better!).

 

I can't thank them enough, we have a long road ahead, but it's not as scary as it used to be.

 

 

Medical Pro's have been not so good, had 18 month fight for a diagnosis and they don't give much information/advice.

[NikkiSmith]

I have to be boring and say this place has helped me so much - everybody here knows so much more than any of the so called professionals around here!

 

Also my health visitor; she is my rock and calls a spade a spade! I had to change GP surgeries to get her, but it was really worth it! She fights for me and my boys and without her ds2 wouldn't have even tried melatonin (previous HV thought melatonin was that in your skin!!) I wish I knew of a suitable way to thank her for all she does & I dread the day she dares to retire.

 

Nikki.

[JsMum]

I have been very lucky over the last years as I have recieved so much support from Js school, especially his LSA, she has time to listen and we get on as well which makes a big difference, the Headteacher and senco and teachers are very aware of Js needs and support us a lot.

 

Js personal Gp has been brilliant as well as the previous GP they have always been really supportive and made referrals where needed, the only ones I have problems with are those who dont know anything about J.

 

Js dietition has been really supportive and encouraged me throw the most difficult stages with his eating.

 

Js hospital Consultant when he was poorly a few years ago with heart difficulties and he has provided us very needed guildance and support and continues to support us even now.

 

Sainsburys staff are really supportive and help when they can when I am struggling with him.

 

some of Js friends parents helped me with his birthday party, that was really nice, as in the past I was rejected by a lot of children in Js previous school so it is really nice when you get other childrens mums coming up to you and talking to you friendly and helping you.

 

I feel very blessed when I meet people who are supportive and understand and they make such a difference to our lives.

 

I cant think of any really good social workers that I have had, or any good CAMHS staff or any health visitors that have been there for us in the same way, which when looking back I needed them the most as it was the hardest time I was going throw with his behaviour as he was younger and it was harder in some ways as I didnt understand what I do now.

 

I didnt have support from the school he was in at the time, Boysterous, naughty and your parenting isnt as it could be was the frequent replies I got, the only person listening and witnessing Js behaviour was his Gp at that time, I rememebring feeling very scared and incredibally alone, and I had no real friends as not many would meet up with us throw Js social interaction and behaviour.

 

I have only stayed in touch with friends who understand J and his disabilties, I guess that reduces the ammount of friends that you really have, but I am in some ways happier because I dont have to be put down and J isnt blamed for everything.

 

Support is essential and It can make a real difference to your coping abilties, tonight I am not well we ate out at a familair place and the staff have got to know J and they understand his difficulties, tonight they where really helpful and very accomadating, its that nice I get all emotional at times as I am so not use to caring people so they are very special people when they are like this to us.

 

JsMum

[lynyona]

Ive got to go with the rest definately this forum and its members, but i must say without camhs and dx id have been no further on.But from then on nothing so all the forums that i have found have been a wonderful source of help and support

 

 

 

 

 

lynn

[LizK]

Adam's preschool teacher - felt like my arm had been cut off when her weekly visits stopped when he went to school

 

Autism Outreach - they are severely underfunded, can't get as much time from them as we 'd like but the quality of what they do is fantastic. His AOW has had lots of good ideas for school and made me a fab reward chart that has been very helpful at home

 

School - he's been there just under a year and they have been great. Got fulltime 1-2-1 support without a statement. He's had two LSAs who have nurtured and cared for him as well as doing all the different things to help his development. Regular meetings with SENCO. She is his class teacher and did a home visit before she took over at Christmas so he'd be familiar with her. My youngest son needed an urgent hospital appointment this week and his teacher said I could take him to school early any morning and she's look after him and his LSA offered to have him after school. She ended up doing that and I knew he couldn't be in better hands. She is very good at lsitening to me rant too !

 

School EP - doing what she can to increase his SLT and OT provision even though I think she's probably fighting a losing battle. Very supportive

 

My friends - I have a group of ASD mum friends who despite having their own problems are there for each of us too. If my son wasn't autistic I would never had met these wonderful ladies

 

Highly unimpressed with SALT and OT, not with the actual professionals we've worked with but with the service and the constraints they have to work under which directly affects the level of help they can give my child

 

Paediatrician is fine, gave us a diagnosis when we wanted one and others were querying it. Doesn't do much now aside from prescribe melatonin but listens to me rant every 4-6mths!

 

Lx

[Frangipani]

I have to agree this forum has been a huge help equally as wonderful as my sons Paediatrician and am very grateful to those who put in the hours to keep it running and all the Moderators who no doubt have a few more grey hairs since they started. Lots of people I would like to meet if you were not so far away.

 

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