Does anyone else feel totally responsible to find the best care for their SEN child?

[mrsforgetful]

My psychologist said today that i am wearing myself down due to my determination to solve every 'issue' that presents regarding my AS boys.
(ie diagnoses,lunch time problems,eating problems,statementing,2nd opinions etc)

She says i have to accept that i can only do so much and i have to slow down. (she likened it to my realife obsession with containers and boxes and the reality that you can never find the perfect box for everything!)

However....i cannot accept this- though i accept i cannot personally 'do it all' i feel sure that out there somewhere is the 'perfect solution/ person /therapy /support etc' for each of the problems....which means i have to hunt and find it.

Then when i 'choose' a method like writing to the school etc....i am very depressed when 'magic' doesn't happen overnight.

Good example is that 5 weeks ago i wrote to the Autism outreach team (copied to the paed/headteacher) about general concerns about the unsupported mainstream education of Thomas /10yrs/AS and a diagnoses for Leigh 7/AS?
.....i felt proud of what i'd written and since then the Paed has referred Leigh for a SALT assessment....

However- to date the Outreach team have not replied.

This makes me feel deflated and less confident to take the next step- which has to be to phone them.

Hope someone else out there feels as responsible as i do- thanks for listening!

MrsF you are feeling what many parents of SN kids do (I certainly do) and I find it extemely patronising when professionals pat our heads and say "there there dear trust us to take care of it". Not sure why they think we would when they make a total cock up most of the time

Of course if anything is slightly wrong at school with their normal kids they would be the first to go and sort it out. Not sure why they think we should be any different.

I think you should have recieved a letter from the autism outreach team after 5 weeks. That would be courteous.

Absolutely. I feel like it every second every day, and along with that goes the guilt that I am STILL not doing enough. Crap isn't it?

I feel like it most weeks and my kids are NT. its my dh medical problems that we end up chasing up. appointments not coming in on time, bloods not done at the right time, form filling, chasing up DLA (7months now, is that a record??), trying to see if he can get a blue badge, sorting out his work problems etc etc. i want a magic solution, an easier way to do things, a way to sort out everything in one go, instead a new problem cropping up each week.

was talking about the guilt with a friend today lou. guilt guilt guilt. Felt so guilty today lay down next to ds1 as he was going to sleep to say sorry for not doing enough. It was very nice having him fall asleep during a cuddle (and the first time he's done that in years) but didn't get rid of the guilt.

Yep, guilt here too, worry constantly about not doing enough. You are definitely not alone MrsF!

I went through all the guilt thing and the 'why me/us/him?' but I felt as thought I was wasting valuable Mummy/son time on it. I then desided to catty on as normal, as I had with my other sons and remembered that I was only Superhuman. Where I live I have had so much support and help. My son attends a SN pre school centre twice a week (taxi provided) attends crossroads once a week, goes to a 'normal' nursery for social interaction, (paid for by social services)twice a week. DLA was through in two weeks and am now applying for mobility. I have been provided with a major buggy within a month, after just one request and a potty chair, that my elder son has said looks like an instrument of torture! The only thing I feel guilty about now is the amount that IS being done for both myself and my son. Sorry if all this annoys you and it's probably totally off track, but I felt I had to get of my chest

Yes it is guilt....and to be told by the psychologist that I mustn't 'worry' is to go against what you NT mums have even said- which is to 'love' our kids-
MANXMUM- what you said reminded me that I am right to look for the help- and i feel certain i have to pluck up courage today to call social services.I am glad you are getting what you need.

I also had a re-read of the title i wrote for this thread and feel I made it sound like I was the only one who feelt this way- What i really meant was the 'obsession' i have to source out these things dominates every waking moment- and i feel no enjoyment in 'just wandering round town' when they are at school as i feel anxious untill the moment they come home- and to think that as soon as they come home i have meltdowns etc to deal with as well...but for all the 'difficulties' at home i'd rather 'endure the worst' than have them 'out of my sight' and worry about their welfare.

Beginning to sound 'overprotective' but to knowingly send my boys somewhere where they are not being cared for feels abusive to me....eg Would you continue to send a child to a child minder if she never gave him lunch? NO- you'd find another - wish it were that simple with a 10yr old unsupported-in-mainstream-school Asperger's/ADHD child!

Same here, worry constantly about dd. Have done since she was born, Then feel even more guilty as I don't really worry about my ds as he is just one of those children that goes through life without any problems. He can tell me if something is wrong etc.
Another example of this is that dd has a little friend at school and her mum came up to me this morning to ask if dd can come for dinner after school next week. The little girl is NT, but really loves dd and it is lovely that she has a "proper" friend. The mum knows about dd's problems and is a qualified creche worker and I explained that look if there is a pen laying around anda blank wall dd will draw on it! She was really good and said she would phone me if there were any problems. I feel sick to the stomach - what would you do? On one hand dd has to be able to be given the chance to experience "normal" things but on the other hand nobody knows her/understands her like I do.

KPB- that's like me trying to persuadee Leigh (AS?????) to have the money a party would cost on top of his present....as last year out of 12 invites only 4 came to his party-I cannot bear his dissapointment again and then him asking the friends why they didn't come- and me knowing that it's not his friend's fault- it's the parents who don't want to let their child 'mix' with MY SON.

So though it's hard for you to 'welcome this oppertunity' with open arms- I would give it a go- you have someone who is willing and aware - so see how it goes- let me know how it goes- it is a big step.

echo everyone else you are definately not alone

best advise i would give ref parties is to personally give the invite to the parent- they then cannot 'pretend' the invite got lost or wasn't in the bookbag....I could start a whole new thread about 'excuses given as to non-attendance to partiess'....but i won't !

This problem only became evident on his 7th birthday....up till then he was 'Mr Popular'....and since september he has only been given 1 invite....so seems pretty consistent to me- luckily as i believe he has AS.....he is pretty 'untouched' by the lack of invitess- as he sees all this 'social' stuff as pretty pointless....as usual it's the mum who feels the pain!!! (also due to AS he needs lots of 'social story' planning on 'what to do/say when recieving presentsss etc....so maybe it's better this way?)

Mrs F, I can't believe that - how rude are some people.
In dd's school as she isn't the only one with SEN/language problems it does make a huge difference - I think. Obviously you will always get the odd child that isn't v. nice but that's life! In dd's school prospectus there is a big section on the unit and it explains quite well the problems that these children can have.
As for dd's birthday party I am seriously considering just having 4-5 close frineds round for a little girlie tea-party, she wold love that as she is a very girlie/pinkie little thing. She would be overwhelmed with 20 odd kids and at least she would really enjoy it! Thanks for your advice, I am going to give it a go, I have to as it is all part of dd's learning skills for life.
I can't keep wrapping her up in cotton wool (as much as I'd love to) as it's not doing her any favours.
Couldn't you maybe take your ds and a couple of friends to the cinema, That way people realise that you are spending quite a bit of money for the tickets and would be more likely to give you a definite yes/no!

couldn't take ds1 to the cinema unfortunately.

This is funny timing. DS1 woke up at 3.30am this morning (and stayed awake- yuck!) and by 5.30 I was pondering all sorts of things and got on the birthday. Was trying to decide between soft play or nothing. He would enjoy soft play but I was wondering if anyone other than autistic people would come......

Ditto with dd. Although I must admit haven't tried yet. If it was a film that she knew and loved such as Monsters Inc. or Nemo would be fine, but something with a new storyline I doubt she would have the concentration.
I remember dd's first party when she was 3. We had a bouncy castle with 15 kids (mainly friends of ds TBH) and all of the kids except dd had a great time. Dd spent most of the time in the living room watching telly. Last year we had the same kind of party but she was slightly better. That's why I think if dd had a small tea-party it may not be so overwhemling.
Dd and ds are going to a party on saturday. I'm taking dh with me as dd is great at the actual party it's the sitting down eating part that she hates!!!! Dh can take dd for a walk if she plays up - who knows???
I am sure dd would love to have all of her unit friends at ther party, she loves being with other sn children. She is almost drawn like a magnet.

mrsforgetful - my ds is now 8 and since the beginning of this year he has also only had 1 invite. He never got a huge amount, but last year he didn't have a party and I wonder if that was the reason (although throwing major wobblies at every party he has ever attended has more to do with it probably!). My heart does break for him, but to be honest he has never mentioned it and I wonder does he even notice? Like you really in that regard!

Jimjams - my ds had a softplay party on his 6th party and he had 15 boys from his class - they all LOVED it. I would say you can't go wrong.

Another mother here who feel guilty about doing enough. I worry that there is one vital bit of info I've not yet discovered, and should have that will help L develop.

constantly - dh and I are always asking ourselves that - I am now also wondering what having another child will impact on all of us...

re. my earlier post. Have spoken to dd's assistant about dd going to her friends for tea. She said I should def. let her go and encourage friendships that she has.
They are so sweet together, they hug and hold hands!!! Dd also calls all of her teddies/dollies by her friends name - first and second name by the way. I have spoken to dd about going and she said yes, please. I will let you know the outcome Mrs F. No doubt I will just be sitting by the phone thinking, why aren't you ringing!!! Still feel anxious but who knows I may be pleasantly suprised.

soft play would be good. dd1 party was at a soft play area, u just cant go wrong there.

KPB....the party i mentioned when no-one came was at the local sportscentre- you get to hire the whole sportshall and then choose a range of activities...we chose traditional party games and a bouncy castle- then a tea party- they supervise on a 1:5 ratio and provided party bags- it cost #7.00 each- and a minimum of 10 kids- so though only 4 came- plus my 3 lads we still had to pay the #70!!!

Soooooooooooo.....like you were hinting- if this had simply been a 'at home' type party then i could see this differently- but as it clearly stated the nature of the party i still feel angry at those parents! (i find it hard enough in the playground...let alone the paranoia that sets in after this)

JimJams- find out if your sports centre does anything similar- as for me it is the only party i will ever arrange as you don't have to share the facilities with anyone else- just the children you have chosen- a soft play centre is fine but i always hate the fact that the place is still open to the public!!!! There seems to be much more roughness etc- than at the parties we've done at this sportscentre......

Mrs F, I would have felt as angry as you did. I always find that such bad manners when people fail to reply and then fail to turn up. Had the same problem as ds as he invited 25 to his party last year. I have since come to realise that 25 is not a good number for party bags, everything comes in either packs of 6,8 or 12. Anyway had to pay out extra, as if we had only invited 24 the no's would have added up. Anyway, last year had 24 replies and they all turned up, except number 25 - whose party bag had cost about £5. No explanation - nothing. We invited him again this year, as ds really likes him, he was an hour late and turned up empty handed no card, present anything. Not that I am bothered about presents but a card at least - even a hand made one. I have come to the conclusion that parties are a complete pain!!!!

In answer to your original question - yes, I did and do feel totally responsible for sorting everything out for DS1. I feel incredibly lucky that he has settled so well into Reception class but I know that if he starts to have problems it will be me, not the paediatrician, not the ed psych, not the SENCO - ME who will have to do all the moving and shaking to get extra support for him.

BTW it is not just SEN - exactly the same applied with my DS2's talipes (clubfeet) culminating in us spending several months making weekly trips to Sunderland (from London) to get the treatment we thought was best. Now, three years later, that treatment is available in London, so at least I feel we did our little bit in helping with that process. But the physiotherapist and orthopaedic surgeon who were originally treating my DS2 had never even heard of it!

Oh, and mrsforgetful, your party story has made me cry - people are so horrible

Following on from this, I wondered how much input you have from your dh/dp's (or other family). Apologies to those without, I don't mean to exclude and have complete admiration for those of you coping alone .

My dh is of the ostrich variety, head in the sand, might peek out when there's a crisis but generally speaking doesn't offer a lot of practical or emotional support. Its not a criticism of him (well sort of), its how he copes but where does that leave me? Feeling responsible for it all that's where!