Here are some suggested organisations that offer expert advice on SN.
Feeling overwhelmed and exhausted(5 Posts)
Hi, I am new here and not sure where to post or where to start, i am sorry for the long post, here goes.
I have six children, the youngest three have SN, DS 3 is 12 has epilepsy, ADHD and we expect a firm ASD diagnosis in the next 12 months (second SCAP assessment, consultant, school and CAMHS on board with diagnosis), DS 4 is 7 has epilepsy and bilateral sensorineural hearing loss and is also being assessed for ASD, DD 2 is 2 and until last week (explanation further down) had bilateral sensorineural hearing loss and dairy and soy allergy. In addition to this, DD 1 15 has recently been tested for dyslexia after breaking down at home and telling us she was struggling and had been for a long time. Dyslexia test said no to dyslexia but ed psych thinks ADHD or ASD is very likely.
Despite a wobble last year when I lost my dad I thought I was coping really well with the children's difficulties with the help of my husband and eldest boys (17 and 19), until last week.
Last week the school rang me on Monday to tell me DD1 most likely had ADHD or ASD and a battery of other tests were in the pipeline and can I come in for a meeting next week - I feel unbelievably guilty that because her brother has much more sever and obvious problems I failed to notice how bad she was and how much she was suffering! Unforgivably we, as an extended family always thought of her as not being the sharpest tool in the box!! Looking back now and watching her behaviour it is obvious there is more to it!
On Tuesday DD2 went for her regular hearing review with consultant, Speech therapy, teacher if the deaf and audiologist expecting her aids to be turned up. Her hearing test was completely normal (the two frequencies they could test) which was totally in contrast to her other consistent tests from age 9months until now (2 and 9months). Doc said the previous hearing loss couldn't be a mistake as too consistent so is testing for a particular type of hearing loss to do with the nerve. If she doesn't have this then we were told almost certainly a procession problem, likely on the autism spectrum! I was devastated, now I am in turmoil thinking if all the behaviours we put down to her being deaf, which she still does even though it seems she can hear at the moment! I thought I knew where I was with her, I knew the path we were in for her hearing problems and felt in control.
On Wednesday the school rang about DS3, he had become aggressive in school to his teachers and has been getting increasingly distressed with things - the school has been amazing, they have never once failed to listen to me and are in constant contact with me. They have phoned his doctor (with permission) to expedite his ASD assessments so they can access more help for him. At the same time, over the last few months he has become really difficult outside, he runs in to the road at will and needs restraining and he bangs his head against the wall or floor when he has a melt down which really hurts himself, he also tries to open the car door when it is moving!!
I just feel like my head is going to explode! I haven't slept all night in years as DS4 has seizures at night and DS3 wonders about the house at night and now I feel like swamped and on edge all the time. It's really affecting my health, I have had a run of hemoplegic migraines which quite frankly I don't have time for!
I am so overwhelmed I don't even know what I really want to ask for help with, but does anyone have any advice or experience with fluctuating hearing or hearing loss due to processing like DD2?
Thank you to anyone who has read all this, it feels pretty good to unload!
Not surprised you feel overwhelmed. I only have two with AS and that is a struggle a lot of the time. Mine sound similar to your ds3 - one is home educated and one is in a specialist school after lots of meltdowns in mainstream. Can't help with the hearing loss as mine haven't had that problem although it was raised a few times as they can struggle to process verbal information when stressed which teachers thought initially might be problems with hearing. Welcome to the SN boards anyway.
Thank you very much, I actually feel a lot better, combination of unloading myself last night and my hubby and older boys making sure I slept. It's amazing how much better one decent sleep can make you feel.
Huge hugs. Two of my three have asd. I'm currently sat with the three year old who again won't sleep! It's shockingly exhausting. I'm not sure on the hearing side of things. 🍫
Thanks for your reply, the not sleeping can be a killer! A friends daughter with ASD had terrible sleeping problems but developed a love of movies in her mid to late teens and spent most of her waking nights happily watching dvds whilst obsessively rearranging her bedroom books and ornaments. It wasn't ideal but it did mean my friend didn't have to stay up with her all night. I am hoping something similar may happen to me at some point.
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