Here are some suggested organisations that offer expert advice on SN.
Today was the day!(11 Posts)
So today we took our second child (3 years) to the communication clinic for evaluation. She came away with an autism diagnosis and complex language disorder diagnosis. Her sister has an autism and ADHD diagnosis. Although in part I knew it was coming the other part of me is beyond devastated that another of my children will face struggles, I will be battling for support etc. All over fb I see my friends with their nt kids complaining about how as a sahp they're not "seen" and one today was sobbing after a hard week and their child came over and gave them a big hug. She's the same age as my daughter. I could be rolling on the floor crying and she wouldn't notice. I know everyone has different struggles and life for some is a lot worse but I'm so sick of it. I feel like I've been dealt a sick hand. We're not having a fourth child despite plans because I just can't cope with more autism. It rules out life and I adore my girls I really do. They're amazing in many ways but mainstream education for them is like hammering a square peg into a round hole and it's hard knowing that (home school is not an option). My dd is still the same but knowing she has autism her future is even more difficult (paed talked about cognitive issues and testing later on). I'm tired of battling, of being screamed at and hit. I'm sick of trying to explain why I cannot force shoes onto my child to her fucking nursery and trying to explain to all the mainstream people around me what the bloody hell autism is and how it impairs everyday life. I feel so unbearably alone. We live in a nice area but diversity wise it's really not. I keep hoping as autism becomes more widely known about that my kids and myself will get break. Because I'm not sure how much fight I have left.
double the fight, isn't it? The shoe/nursery issue resonates. I get helpful suggestions like 'try laying her clothes out the night before' um....
It really is double the battle. One is leaving speech the other is going into speech. I've had all sorts. My favourite being "can't you make her wear them?!" No I cannot because she screams blue murder and bites them to get them off. It feels like a never ending battle.
Be ruthless. Seek the people who understand and will help. Fill your life with them and sideline the ignorant.
I too struggle with the trials a tribulations of more average families. If I'm honest it gives me the rage
and sometimes I share it. I'm "lucky" though I've lived worse than autism. Truthfully it helps but comparisons are never a high point of our inner dialogue are they?
Oh god yes I get the rage. The comparisons are awful and I know I need to stop but seeing other people have been hugged by their child makes me so angry and then so incredibly sad. I hate the toddler years. They're bad enough without asd in the mix. Tonight's job is emailing the council and tomorrow it will be ringing them demanding to know why we've been turned down for an assessment for an ehcp. Now she's diagnosed that'll help but I just need to pick myself up off the floor and try and dust myself down.
For me the rage is more surrounding how worried they are about some total non-issue. I try to bite my tongue but sometimes it beggars belief that knowing us I have to listen to total self absorbed shit.
IPSea retails to assess information lack is pretty good IMO.
As for the rest. Yes it can be totally shit. it gives me the rage when everyone is "there there, it will get better". Sometimes I just want people to recognise how hard it is NOW. right NOW whilst your going through it.
I hate when my friends complain to me. I nod my head, I agree and then sit in stunned rage that there tiny problem warrants moaning to me. Makes me sound like a real bitch I know. I don't really have anyone to talk to as my friends would not even begin to get it or would try and relate "my daughter never liked shoes either" whereas my dd has absolute meltdowns over a shoe anywhere near her foot.
get you. I have been that parent with silly worries/moans about my 2 NT girls (or at least 1 NT girl and 1 with traits that really aren't that bad) and now I have DS with ASD and I understand that all the things I used to moan about/worry about with DDs was nonsense. Who cares what their reading level is if its age appropriate, who cares if they are the star part in the play so long as they are taking part. Actually competition between/worries of parents of NT children are all so irrelevant generally but be kind to them, they don't know this. I didn't know this until I had my lovely boy. Sorry about your DDs' struggles, its not fair.
I feel your pain, I have two on the spectrum and it's very hard work. Focusing on all the things I can do has been the way to navigate through it for me.
Get on to IPSEA or SOSSEN for help about refusal to assess. SOSSEN were amazing for me. Also contact your Specialist Health Visitor (or equivalent in your area) and ask them to refer you for a Care Assessment. This may enable you to apply for respite care. Even a couple of hours a week to do something you need to do or simply do nothing and catch up on some sleep.
I feel for you, I have been in tears a lot this week over having arguments/avoidance/meltdowns over every little request recently. I sent a message to my dh who was working away saying how much I hate having to stand with the parents at the end of the day hearing their complaints about everything and I want to shout they have no idea how lucky they are that their child enjoys school, is willing to go and can be taken to parties, friends houses and clubs and left there...I know this is futile and their will always be others worse off but it is hard. Good luck with the council- relentless pursuit and discussion with them
Seems to help grind them down in my experience X
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