Autistic child ‘it will get easier’ does it really??

[Sleepdeprivedmamma]

Hi

i feel like a bad mum for even venting like this but i just wonder if we are alone
DD is nearly 7 - Autistic (diagnosed the day she turned 3) and is on the pathway for an ADHD diagnosis
she has an EHCP and she attends a specialist school

everyone along the way has said - it will get easier - it gets easier with age etc
it just keeps getting harder 🤯🤯🤯🤯
she constantly screeches now and it feels like torture like my brain cant function when she does it (almost every waking minute) she does it regardless of if she is happy or sad. I reached out to school for help but they just said its a phase. Shes been screeching/screaming since feb.
that aside she is just relentless. Besides school we have no help - she was assesed by short breaks and they agreed she could have a pa 10 hrs a week in the school holidays as help but this was 18 months ago and they said they cannot find anybody suitable for her / ‘funding is sat with managers for sign off’

i feel awful for saying this because i love her endlessly - but i feel sick with anxiety for the summer holidays. I just cant cope.

for some does it just not get easier???

Hi op I’m so sorry to hear your short breaks has got stuck in a desk pile somewhere. If you ring the charity Contact a Family they will tell you how to escalate this to put pressure on them to provide the care you need.

Their “listening ear” helpline service is also really good and you can book in a 45 minute call to be supported.

I would really recommend the book by Dr Joanna Griffin Day by Day which is about how to manage emotionally as a parent carer which has really helped me.

For us it has got easier over time but I’ve also got better at coping and have had some therapy to help me. I send you so much support op.

I have two children with asd and adhd one is 12 and one is 15. My 15 year old has gotten easier. My 12 year old who is more profoundly on the spectrum has gotten significantly harder. Both are girls so there’s puberty to contend with. We’ve also struggled to find a carer for my 12 year old. If you’re on the adhd route, medication might be an option as it’ll make the holidays a little better. But I’ve found it really tough. It’s not an easy life. Hugs to you.

Thank you so much for replying @Onceuponatimethen

ill order this book now!

i will contact them tommorrow thank you so much!

could i ask how old your dc is?
i also have a 7 month old and a 3 yr old - i just cant believe how easy they are in comparrison - like i cant believe other people have lives like that. We can barely leave the house. X

My lot are older primary years and at secondary school now. It really can get easier even if it seems like it won’t.

Let me know what you think of the book. I wish I’d read it years earlier.

Is there any good local SEN parent group near you op? Or good parent group at the school she goes to? That has also helped me to make more friends in the same boat and makes me feel less alone with restrictions on going out and things like that.

My son sounds similar he is also 7 and was diagnosed with ASD at 3 and got his EHCP at 3 and started a special school at 4 in year R. Everyone always tells me it will get easier too but it just feels harder and harder 😢😣 I am constantly on edge all day as he is so impulsive and unpredictable and he is very attached to me. He is also getting bigger and stronger and has violent meltdowns and I am terrified what will happen when he is bigger than me.

Hey op, you're not alone! I also have a dd7 - comfirmed ADHD and just waiting for the autism diagnosis (no question she is autistic).

Our challenges may be different to yours but I often think the same as you - when will this end! We're utterly drained. Ours is meltdowns that last for hours and hours almost daily during which she trashes which ever room she's in and tries to harm herself.

Mainstream school, no ehcp (yet, just about to start that battle!) really needs a specialist provision moving forwards.

Standing right here with you 💐

Hi @Trentie thank you so much for replying. I think just knowing im
not alone helps.
yes DD is very much more profoundly on the spectrum . School said in kinder words that she is the most challenging child in the class.
i tried a 2 hr group in the april school holidays have never done anything like that before really hard to get a 1-1 place on it. I spent the 2 hrs so worried about her - picked her up all the other parents and children happy chatting see you tommorrow - i said i was there to collect DD and the people who worked with her /her 1-1 looked drained and said how tough it was. In some ways if all of these people school /group struggle with her it makes me feel like its ok that i struggle.

oh gosh puberty. And x2. I feel for you!
have you tried medication for either of your girls? X

No advice but sitting in the trenches with you. My 7 year old (awaiting autism assessment)has meltdowns and gets physical. I'm exhausted trying to keep everyone safe and trying to help them regulate and spot signs so they can start to learn to regulate themselves (big ask at 7)

Likely autistic too so I'm battling trying to stay regulated myself. I'd love some more day to day support in the holidays particularly but I don't think he would hit the thresholds for being awarded any help. We are still trying for a ehcp.

I'm just tired of feeling like I'm failing in everything. I really really hope it gets easier for us all in this situation.

there is one through our local carers centre but i find it so hard to attend with baby and toddler. Plus when she is in school there is soo much to fit in!
i have a couple of friends with autistic children they have always been my support system but the children are very very different and they dont struggle as much. Its at a point now where i dont confide as much x

For us it got easier now (he’s 12), but his autism isn’t profound. He is verbal, he can access the curriculum (at a special school, but mainstream curriculum).
But the first 10-11 years were not fun, and there are many things we can’t do as a family (eating out, going to a show, travelling, …)

Hi @whatsoccuring5 thank you for replying!
sounds much like dd! So im told her impulsiveness/unpredictability is one of the main reasons they reffered for adhd - do you see any traits in your ds?
yep DD also has violent meltdowns. Im with you worrying about as she gets bigger. I cant believe the strength she has at 7!

do you find school helpful? X

Thank you for replying @hellooomynameisbillyballoonhead

we have this too! Feel like we cant have anything nice in the house/always a mess from her meltdowns.
how are you finding mainstream? Dd did a year at mainstream while we fought for her place at specialist. That fight alone is so hard i really feel for you x

Feel the same @MightyGoldBear always here if you need to chat

I would reach out to short breaks anyway - even if they dont meet the threshold there are other things they can offer you events/services
e.g i cant take dd to public soft plays anymore so they told me about some affordable private hire ones - about a pool you can private hire for children with disability's. The send group she tried in the last school holidays etc x

Glad things are a little easier for you now x
its hard thinking of the things you cant do as a family isnt it. My 3 yr old has just started to ask to do certain things that we just cant do. I try as much as possible when DD is at school to fill his cup too x

@Sleepdeprivedmamma It’s interesting you mention a 7 month old baby in the mix. Do you think your dd7 has got worse since the additional sibling came along? My middle child (ASD, and suspected adhd) seemed to get much much worse with the arrival of a younger sibling (there is about 6 years between them). One of the things that helped was by having weekly 1-to-1 days with the middle one, we took it in turns so it would be with me one weekend, then with my dh the next weekend. We found it really transformative, it was almost like an instant ‘reset’ with him. We got him to choose what to do for the day out (from a list of 2-3 things), he chose where we would have lunch, and he got to choose small gifts/ souvenirs for himself and his siblings from the gift shop afterwards. It sounds like your dc is much more profoundly affected, so whether this would be something that would be possible for you, I don’t know. We also found that arranging alternating childcare for all of the children during the summer really helped, so there would be some days with different combinations of the children at home, and also time for more 1-to-1 days with each of them. We felt that the undivided attention from an adult, in addition to ‘agency’ to choose aspects of their day out really really helped. For me, I think the worsening behaviour (from middle dc) was his way of trying to communicate that things had changed / he was distressed about it, but difficulties in communication meant that this is how it played out. This may not be at all relevant to you, but when you mentioned your 7 month old it just struck a chord with me. I hope things improve soon.

@Sleepdeprivedmamma oh and not sure if anyone has mentioned this, but I have some noise-cancelling over-ear headphones which really help keep me calm (I put them on with the noise cancelling on, but no music) - one of my dc is very verbal at times (and when younger had an extremely ear-splitting scream / screech) and I am very sensitive to noise, so these have helped.

For us one of the best things has been having physical/sensory activities set up in the garden -water tray and a rope swing. We would steer him out there straight after school whatever the weather. Now he goes out himself to use the rope swing. He also likes to whack all the plants in the garden with a stick, so we just have lots of very hardy bushes!

@Stoufer thank you for replying x

i totally see your point but shes always been very intense and things have been hard long before the baby arrived - the baby was born early november and the screaming started feb
she generally ignores the exitense of both little brothers but she does give the baby a kiss on the head when she gets home from school. Melts my heart.
obviously she cant tell me shes non verbal but they dont seem to bother her

this sounds so lovely glad this works for your family! DD struggles to leave the house except for a few set activities we do - its otherwise huge meltdowns with anxiety and agression. Hopefully this will change in the future. We do make sure they all get lots of one to one time !
DS - age 3 - keeps asking to go to disney land at the minute - thats one i cant do! Again hopefully in the future x

I do feel for you. My DS is nearly 30! He has ASD and severe learning disability (I don’t use the word “difficulty”, it’s too sanitised).
my first recommendation is to look up the Challenging Behaviour Foundation, it is an amazing charity with lots of resources.
When DS was young we found many special needs and/or ASD sessions such as swimming, trampolining, yoga, adventure playground etc. We are in London and I didn’t have other children at the time so I would go to anything and everything. In my day, the purpose of short breaks was to give you a budget to use as you wish, we did not get allocated anything by the LA on direct payments although they ran a few holiday sessions separately. I think you will have to try to find helpers yourself if you can e.g. staff at school, university students (especially psychology), local six formers etc, much easier in a busy location. The other thing that was transformative, although people often resist, is medication. Don’t dismiss it, no-one wants to use medication but almost everyone I know did eventually. Wishing you hope and love

I forgot to say, the most important thing is communication. Whether that is Makaton, pictures, schedules etc or all of the above.

Hi @FumingTRex thank you for replying x
This sounds lovely!
DD loves to be outside but we found she would climb everything so got rif of any trees and anything with height we just have tuff tray on a stand - a water wall (she has no interest) a chalk board on the wall (no interest) any toys she throws over neighbours fences - she is balloon obsessd but throws them
over the fences too and the neighbour complained she was worried her dog would eat the ballo

My son is 18 now and yes things have got more manageable … I think some issues I’d worried about didn’t come to fruition - eg he was very challenging and physically violent and I worried a lot about when he was bigger than me but the reality is, he’s had so much therapy through school and we have gotten better with helping him cope with meltdowns that he is rarely physically violent now. He mainly cries and panics and needs a lot of support but I can deescalate better now than when he was younger.

We have struggled with getting respite and carers and I have recently struggled with how much he is attached to me and how rigid his routine is, also he needs support 24/7 so if I need to pop out he has to come with me and he can’t go out alone. Sometimes that feels a bit stifling and a bit ‘forever’ but then I relax into it and I’m fine again.

@FumingTRex would eat the balloons
also now shes screeching/screaming so much i worry the neighbours will complain/call the police
honestly it i heard it and didnt have DD i would worry.
feel very trapped

sorry knocked the post button before i finished x