To wonder how parents of SEN children relax

[ploddingdonkey]

Hey MN,

My DD has SEN, is five years old but developmentally around two and a half. She requires attention, guidance and support almost from the moment they wake up to the moment they fall asleep. She has trouble with self directed play, poor impulse control and has an inability to wait for you to complete a task. She will sometimes quietly watch a programme on TV.

It's Sunday evening and I'm exhausted, we don't have family nearby and struggle to find baby sitters that can meet her needs.

We love spending time with her, she is great, we're not frustrated by her however we need to find ways relax and recharge. What works for you? Posting here for traffic

iPad, or tv (sometimes works). We have to wait to bed time otherwise. We get 3 hours respite per week per child which can be used as 6 hours one every 2 weeks(arranged through social service disability workers) but my 2 eldest won't go it it anymore as it's 'boring' but they are much easier than the 6 year old.
My 6 year old has decided he will go again (he loves the individual attention) and was supposed to go yesterday but I ended up in A&E for 4 hours instead as he bumped his foot after falling and wouldn't walk on it properly (it was fine, he had it xrayed as the dr couldn't decipher him either).
It does get better when they can go to school or nursery if you aren't working or are part time.
Try and get her an EHC assessment as soon as you can. It can be harder to get one once they are in school.

Just remembered, I found giving my 6 year old 'jobs' to do helped a lot, folding washing, emptying the washing machine into the dryer, etc.

Do you have a local play centre for SEN children? So you can chat with other parents for a bit whilst they play with toys etc.

When you say trouble with self directed play, she won’t do duplo/blocks, rolling playdough or painting/slime/sensory play (rice with toys hidden) on her own for a bit so you can have tea?

Have you had any help with regard to helping her to do more self directed play? I’d be looking for ways to build on that.

Don,t know it is available in your area, but my parents were link workers. They would look after children. (You can also do adults. ) Sometimes over night sometimes for a few hours to give parents respite. Worth doing some research to see if similar project in your area.

@hennaoj thanks for your reply. I'm glad his foot is okay!

I've been trying to get her involved with household chores and that seems to go alright, she's very good at putting things in the bin and helping to load the washing machine!

She had a speech and language delay so our thinking is that she wants a lot of attention in the evenings and weekends as we take the time to listen and understand her whereas during the week her peers struggle to understand and engage with her so she has a bit of a quiet existence

I waited until they we're at school. Now I make sure I give myself a half school day off a week to do something purely for me. I use SBLO hours in the school holidays to give me that rest.

Take it in shifts of blocks of time
So one of you has her for 3 hours while the other one goes to town or gym or has a lie in ,then you swap for the next 3 hours ,or do if by afternoon ,or one of you has her all day Saturday,the other Sunday .
Be strict with bedtimes ,put a routine in place ,supper ,/milk bath ,teeth bed ,story ,lights out by 7.30 and stick to it ,regardless,taking it in turn to do the routine so you each get a night off.it takes time to get them used to the routine ,but every evening free will be worth it .
Make sure she has plenty of excercise and fresh air ,we always did a walk after dinner ,before the bath ,went to the park in the summer ..
Mornings have a drink ready by her bed ,stair gate on her bedroom door ,plenty of toys ready for her to play with many you might get half hour in the morning where she plays by herself ,especially if you have changed her nappy and poped her back in her room with her drink and toys ,mine were in nappy’s till way gone 6.

On school days I have some time in school hours. During weekends and school holidays we only get to relax when he is asleep. Weekends are a bit easier as at least with 2 people you get to go to the loo without wondering what is happening whilst you are out of the room. We don't get any respite because there isn't anyone with the skills to do it.

School. I’m a lone parent with no help so the only break I get is when they are at school. One 8 year old with asd and one 7 year old waiting for an assessment.

I dont. Its constant. Its exhausting :(

Wine? But seriously I have a good group of friends with children with similar or other complex disabilities this helps immensely we have a chat group and meet up weekly,the most invaluable thing have ,had said to me was find your people only other SEN parents IME really get it!

Now I remember
I always had a dvd on after lunch ,which we watched together,again they got in to the routine of a dvd after lunch ,so I was able to slip away ,mine are adults now , it I remember Rosie and Jim ,would for some reason hold their attention,yeah they loved that program.
It’s finding little ways to carve some space for yourself in a busy day.
We also spent time on the garden making sure it was secure ,and there was sand and water play ,and paint brushes with water to paint the fence with food colouring in the water as paint ,I could have a cup of tea ,if I got them in to waterproof all in ones and sent them in to the garden water ever the weather ...not a storm obviously..

When they are at school and I can escape housework and admin. When I’m in the car and they are strapped in their car seats.

@peanutbuttermarmite not really no. She's very sensory and needs a lot of encouragement, her attention span is extremely short. Meal times are a struggle at the moment too.

It's important that we try to foster independence in her. I spend a lot of time on Pinterest trying to find developmentally appropriate activities that she'll enjoy. Her one to one support is also trying to help with independent play.

She does have one friend that is similar to her that she plays with on a semi regular basis. When they are in good mood it's great, when they are not it's awful! They bring each other's special traits out and the situation quickly escalates. It's great to spend time with other people that understand it though. I'll try and find more parents families for us to spend time with. There doesn't seem to be much of a SEN community where we live.

Wine!

A very structured day. Country walks. Cinema trips (with ear defenders) and special trips to the supermarket to buy ingredients then baking. Far too much tv in between. Wine. V hard with an asd child that has no interest in toys or play at all I must admit.

I went very, very part time at work so I have Monday and Friday while ds10 is at school.

I have a fair bit of house stuff/admin to do on those days but I try to sit down as much as I can and watch really mindless tv and do some crochet/craft project.

At 5, any activity you do with your dd is going to require involvement from you so I would concentrate on things like soft play where you can sit with a coffee or getting her to watch as much tv as possible (I'm not a tv addict I promise!).

No advice but yes I get it. My son is nearly 9 has autism and my daughter who is 4 has a severe speech delay, hypermobility and behind with her motor skills. My asd son is so fast on his feet yet Dd can’t walk without becoming tired quickly.. so often he runs off and I have to pick up Dd and run after him. It’s really hard.

My son is harder work than my daughter. He doesn’t watch any tv, I wish he did, he’s not interested. He does play on the computer and iPad so that keeps him occupied for a while.

I can never relax whilst they are awake. I’m always on edge.

The only time I can really relax is when they are in bed. It’s usually not for long as by the time they are sleep I’m exhausted!

No advice but hugs 🤗

Do you work? If so how many hours do you work? Do you get any chill time when she’s at school? I really hope you do!

Our son has a set bedtime, has had since he was a toddler. He goes up to his bedroom and knows that he can play in there until he's ready to sleep (sometimes 8pm, sometimes 10pm) but basically he doesn't come out of his room. That's our 'relax' time. We're listening out for bangs and crashes, we have a cctv monitor, so it's not fully relaxed, but it's the best we get outside of school hours and respite.

[Incidentally it took 3 years of asking, 1 complaint, 1 ombudsman complaint for us to get the respite award, which came when he was 8yo. We get 1 overnight every other month. Better than nothing. ]

Sounds really hard @ploddingdonkey personally i’d build at least two tv programmes into her routine - friends with similar children does help even if the children don’t always play together.

I can relate to the feeling of being on edge all the time, mine has impaired danger sense, poor motor skills, walks very slowly or tries to run off - she’s improved greatly but I can barely remember the last time I had fun.

Does she go to school yet?

Do you also work?

For me, I work part time and am a lone parent. My lo has multiple needs but on the whole I manage, sometimes by the skin of my teeth.

Sometimes it means using some of the time on my non working day to sit in a bath for 30 minutes. Family would have my lo if I requested it, but I feel lo is my responsibility.

In your scenario, I would try tag teaming. Making sure that your oh is pulling an equal share in all ways, so Housework and childcare.

I don't relax as I am home schooling linked to the SEN. Two school placements broke down, leaving me with not much local choice. My child is doing well educationally as they use internet school, but the behaviour is best managed as a family with a routine in place each day. Being ill myself with significant genetic illness and having responsibility for a difficult elderly parent does not help. I work from home when the kids are asleep but the social isolation could drive anyone up the wall. Worry about burn out as the kids father works long hours and isn't around for them everyday. I focus on the high points of family life, and try not to dwell on the fact I am absolutely shattered, every day. Coffee is my best friend.

Can she swim? Or at least play and doggy paddle in the shallow end until she's zonked out afterwards at home?

frankly we dont,we cant even sleep together as a child need a adult each at all times

2 kids 15 and 9 both have many complex disabilities each, the 9 y old is semi verbal and some days non verbal if he chooses to

both home educated,by choice but then we would have no where to send them anyway as there is no where for them to go.

here special schools are very far and few between and you have to be severely disabled to get in and even though they have 6 and 7 separate diagnoses neither qualify

but then they are then not suitable for mainstream school either and we dont do units or classes attached to the rest of the school its if you dont fit tough

both need 24 hour care, neither sleep so we are up all night every night with a kids each,99% the 9 y old is with me as hes still cosleeping,mostly its his disabilities but he also has extreme anxiety of the dark and he cant toilet himself so still need help with that

we get zero help off family or any professionals,its all down to us

we are literally 24 hour carers

at this point we haven't slept at all for 3 days straight and the weather has been atrocious(im deep valleys of south wales,where all the flooding and wind damage has taken place)so they cant go anywhere anyway

oh forgot to add to post both eat constantly as well and i mean constantly 10+ fresh home cooked meals a time