Balancing my SEN child’s needs with getting out at weekends

[Poppinsbutwitharucksack]

I have an 11 year old who is ADHD, PDA and awaiting an autism assessment. Most weekends we stay home and do what he wants, as I understand he finds school overwhelming and needs the downtime. I completely respect this.

I work 45 hours a week, am a full time single parent, and have no support network. My parents are very much ‘this is our time’ camp members, despite my gran raising me as a child. They do not acknowledge my son has SEN needs, as he is not swinging from the light shades or climbing up curtains like a feral cat. They actually don’t spend enough time in his company to notice his quirks.

Most weekends we craft, play games and have a generally chilled atmosphere. I’ve always encouraged him to go swimming, we go when it’s quieter, we will go for walks to quiet areas, and we go out for meals too. I do encourage some social time because I feel being at home constantly can add to the overwhelm when you do go out.

I try my best to book SEN slots, if we go to an activity etc and try to give him plenty of notice that we are going somewhere. The problem is, when the day arrives I am often met with challenges that ruin the day before we go anywhere. In honesty it makes me not actually want to do anything, due to the onslaught that awaits me on the day. I do fight this mental pressure, but I’m exhausted before we get anywhere.

The mornings are particularly hard, and quite often the day has gone before we get anywhere. It’s my birthday today and he was told we’d be going out this weekend however, today I’ve been met with shouting, slamming doors and an absolute refusal to get ready. He’s asked if he can go to his grandparents but they’re going for dinner so have declined. I’m sat here in tears, as all I wanted was to go somewhere for fresh air, a cuppa and some cake. Nothing strenuous or loud or busy.

How do I make it easier, without spending my entire 30s locked away every weekend most weekends, not seeing another soul until I go back to work on Monday. I’m feeling really trapped and alone right now.

Birthdays are particularly tricky for SEN kids. Mine can’t cope with anything on the day.

Things that help us

• visual timetables
• more support in school/alternative provision
• Agree on day at home, usually Sauturday to recover from the week

Does he have friends who he would like to come over to play?

@Policeontheplane We already do all of that you have suggested.

He doesn’t like having friends over at home. He doesn’t like school friends in his own space. He actually doesn’t like visitors at all.

It sounds hard to make time to meet your own needs whilst also supporting your son and working full time. I don’t know what the solution is but it sounds very hard going and I think you are absolutely right to acknowledge that your needs matter too.

Happy Birthday

i just wanted to offer some sympathy. I had a number of years where I felt pretty trapped at home by my sons needs.

I tried to make home as nice as possible as I rarely left it apart from for work. I got quite lonely and had down days. I had a birthday where all I wanted was a walk at a particular location but my son had a meltdown as it wasnt familiar, so got back in the car and came home and that was that.

It did get better, my whole life wasnt trapped in. I can leave him alone now for short periods of time and I can get him out to do more things. I can have my friends round for coffee.

I also made sure to celebrate at work with cake and company.

You sound like you do so well with tge swimming and activities and Im sorry your birthday is a down day.

@Princessfluffy it is very difficult, he is often a loving boy but his own needs to constantly take over. I appreciate you taking the time to comment, thank you.

@Owninterpreter thank you for giving me hope, this sounds really encouraging and I’m glad you have at least a small amount of respite. Thank you for your comment.

Oh man. I take it he is far away from been left in the house for 45 mins by himself?

Is his father around at all?

Happy birthday op.

im in a similar position, pda teenager who wont leave the house. I have miserable birthdays, we have Deliveroo which dd2 eats in her room so I’mmlargely on my own but at least i dont have to cook.

i do have other friends I’ve met through local Facebook groups and WhatsApp groups for parents of autistic children. We have the odd coffee morning and evening drink which keeps me sane. I have dp (who is lovely but doesn’t live with me and doesn’t understand pda) so we could go out on my birthday but I feel I had kids to be with and it feels wrong to go out without one of them.

We have found that once in a school that supports rather than drains, our lives are opening up again.

Does he have an ECHP?

I have two with SEN. Zero support. I invite my friends over once a month or so for wine and a catch up. The kids understand that I also need adult time. I made it clear if they kicked off about people coming over they would loose their rights to the Internet for the weekend. Now they manage okay, most of the time stay in their rooms but they've started to come downstairs and pop their head in and say hello. Win, win.

Not sure what you do for work, but is there any chance of working on a Saturday or Sunday from home and having a day off in the week instead? Do you have a garden you can get outside to? Can you have a friend over for company?

It doesn't sound like he has the capacity to either go out more, or be left alone yet. But hopefully not that long if he is 11. School takes up so much energy to get through.

School is very good and he has all the resources he could possibly need. I couldn’t ask for a more supportive environment. Friday and the weekends are the worst because he’s tired. I also worked in SEND for 13 years before I do the job I do now, and left because it was a lot to deal with both in work and in my personal life. There needed to be a variety in the day.

His dad recently married and doesn’t support our son emotionally or financially. It is what it is, it’s just hard and I’m tired.

I hear you. It sounds very tough. I wish their was some support for you.

When DS was small we were in a local ASD group. They choice of activities were always ASD friendly and everyone “got it”. It was great for DS because even though he would fight to stay at home but there were kids from every spectrum disco ball level so you kind of knew he was on the right spot in spite of the push back.

Would you maybe have something similar?

Sounds really tough and it also sounds like you're doing a great job of pushing him a little and to compromise, even if it feels like you're not getting your own needs met.
I know what you mean about the demands, is it possible to have some possible activities where you can just say you can go or not, if you want to go then be ready at x time? That worked better for us, then things were sporadic, but I resigned it to being an occasional outing, then gradually he realised there was no demand, at which point he turned it into a weekly routine. However he is overridable at a push.
It's very hard though to get past the demands and use the declarative language and still end up sitting at home all day! Good luck.

This sounds hard. My child (similar profile to yours) is very difficult about other people's birthdays and events like Mother's Day. I am in a couple though and DH and I have birthdays in the same week so we get round it by doing a birthday thing around that time jointly and I celebrate Mother's Day with my own mother.

Do you feel that over the next couple of years you could build up to leaving him on his own for short periods? Or maybe a babysitter or friend could sit in a car outside?

Do you think anyone associated with school might possibly agree to keep him company?

Other than that all I can think of is set up a nice evening for yourself with wine, nice food, a film etc.

Or save one day of annual leave for your birthday? Or if you're in a school, designate your official birthday to be on a day that his school is open but yours isn't?

There is one place DD will always go: Wagamama. Bit random I know but works for us!

Thank you so much for your comments. It’s comforting to hear from those who are, or have been, in a similar situation. It really does offer me some peace of mind in knowing we aren’t alone.

I am currently awaiting an appointment for him to attend therapy. Once we have this, there is a group he and I can both attend, offering support to both children and parents. We have to be under a therapist before we’re able to attend though. That is keeping me going, even if we have at least another year on the waiting list.

I will eventually work to leaving him on his own for a little while. He’s not quite there yet, but it is something I need to work on. In the end we went to the local park, bought some picnic food and had it at the park.

We have to be grateful for small mercies at times like this. It’s tough but I really am trying. Your comments are appreciated more than I can say. Thank you.