Struggling with My Child’s Additional Needs and Feeling Like I’m Failing

[pimpprice]

My DS (6) has recently been diagnosed with autism and sensory processing difficulties. He’s clever, funny, and wonderful, but I feel like I’m constantly failing him. School have been great and put things in place for him, but mornings are still a nightmare. I’m always questioning if I’m being patient enough or pushing hard enough to get him the support he needs. Family comments like “He’ll grow out of it” or “You just need to toughen him up” aren’t helpful either.

DH is supportive, but he’s out at work a lot, and DS always seems better behaved for him, which just adds to my guilt. I’m so tired all the time and worry I’m not doing enough or that he’ll look back one day and feel like I let him down. AIBU to feel this way?

Can I ask how you knew your son was autistic? What were the signs? NB - concerned about my daughter.

thanks

Hi I have DS5 with autism, what is it specifically about mornings that are a nightmare?

we're always on time but it does feel like a major rush some mornings, I think we need to get up earlier but DS still doesn’t sleep through the night even when using melatonin

i definitely still baby him a little in that I help him with getting ready and things I think his peers can do on their own but realistically I’d rather just do it and know it’s done than ask him 20 times and end up doing it myself anyway 🙈

You’re son is 6 and you have already managed to get a diagnosis. That is a sign of a switched on parent who is doing a good job and knowing what your child needs.

Have you looked for SEND parent support groups in your area. Either just facebook or on IRL.

My 8 year old is on the pathway and I have 5 yr who I think it ND. All 6 year olds can be difficult in the morning. Mornings are often nightmares. What is going on which is difficult for you? Poster maybe able to make suggestions to make things eaiser.

I try and remember the phrase “guilt is the enemy of confident parenting”.
Its not helping you or him.

However as a SEND parent there just will be days or weeks/months where you feel entirely defeated by it all. I’ve been like that this week.
Its really hard not to spiral.

Find online supportive groups or even better real life parent forums or groups - it really helps to moan to someone in the same boat.

Mornings are so tough here I had to leave my FT job as couldn’t reliably get there on time.
It’s so stressful!

Also 6 might be hard going as it’s year 1 and more demanding than early years.
Im sure you are doing a great job.

Im going to try a daily journal soon to identify what sets off the bad meltdowns etc and what leads to good days- maybe reflecting on your positives could help too? Easier said than done I know some days

You have to find your tribe. See if there is a group maybe locally on FB of SEN parents.

It is a hard road and it’s exhausting and isolating. But you are not on your own and are clearly very alert to his needs. You’re not failing him. Big hugs x

Also he’ll be behaving better for your DH as you are his comfort zone/primary carer and he feels secure to fully be himself and still receive unconditional love.
It’s a mixed blessing I know but sounds like you are doing an amazing job

@Suefr Hi there, of course! For us, the signs were mostly around sensory issues and difficulties with change. My DS would get really upset in noisy or crowded places. He also struggled with transitions, like moving from one activity to another or changes to his routine, and he had a lot of repetitive behaviours (lining toys up, for example). He’s really clever but struggled with social interactions. If you’re worried about your daughter, it’s definitely worth having a chat with your GP or HV. Trust your instincts, you know your child best.

@pawpatrollerr Hi! Oh, mornings are chaos for us. It’s mostly sensory stuff, clothes being itchy, or just him not being in the right frame of mind to get ready. Sometimes he just refuses altogether, and I end up chasing him round the house while the clock’s ticking. I can completely relate to what you said about helping more than you probably should. I’ve tried letting him do more on his own, but like you, I end up nagging 20 times and still doing it myself.

As for sleep, I feel for you there, when he’s had a bad night, the mornings are even harder. We’re trying to build in more time so there’s less rushing, but it doesn’t always work.

You say that your son is better behaved for your DH and he is out a lot with work within the same sentence. Also in this sentence you state it adds to your guilt

Have you thought that your son is most comfortable with you, so he can be his true self and show his emotions in his toughest moments to you as he trusts you implicitly? My DD’s school would be none the wiser to her meltdowns outside of school if I weren’t to let them know. They don’t always need to know but there has been occasions towards the end of term where she’s truly struggling and I need an adult there to keep an eye on her. She tends to mask and internalises her feelings at school and then lets it all out at home when she’s in her safe environment with me

I think it's sometimes totally impossible the standards we put upon ourselves as parents (particularly mothers, for whatever reason that may be.)

With AN it's no different. But if we are trying to meet some standard which would be impossible for the parent of a neurotypical child - then it's the same but multiplied by even more.

Mornings can be really tricky. Most helpful things IME are visual timetables, time markers the DC can understand (we have a set of sand timers from amazon and a visual timer with a rainbow which disappears as the time runs down - the old school version of this for my eldest was that we would watch terrestrial TV and I used episodes of Peppa Pig as a time marker!) - spare time built in for transitions, some system of temperature checking (we have an indoor/outdoor thermometer) to sort of make the coat/wellies/etc decision not seem like "me" imposing it, and enough supply of socks/clothing that don't totally freak them out in terms of sensory overload.

Also adults remaining calm which is not my forté unfortunately but I am better at this when I can understand/recognise what phase the DC are in in terms of dysregulation, and when I know we have plenty of contingency time.

Lastly this is very random but I honestly think one of the best things we have ever put in place is a nightly before-bed try for poo for max 5 mins - they just do not recognise the body signs and/or they don't want to sit for long enough to let it happen, but having that discomfort sit there for days really really ramps up behaviour. I appreciate this won't help for all DC but it has been close to a miracle for us.

I get a lot of refusing to go but I try and distract him and break the morning down and give him options like asking what he wants for breakfast and chatting to him whilst I’m actually just dressing him, brushing his teeth and usually by the time it’s time to leave he has settled down, but it’s not one hat fits all

Thank you so much for this, I really needed to hear that. You’re probably right that he feels safest with me, which is why I see the toughest moments. I know deep down it’s a good thing that he feels able to show his true self, but it’s so hard in the moment not to take it personally or feel like I’m doing something wrong.

I can relate to what you said about your DD masking at school. My DS is exactly the same, but they don’t see how much it takes out of him. By the time he’s home, he’s completely overwhelmed, and it all comes pouring out. It’s so tough seeing them struggle, isn’t it? I’ve also had to give school a bit of a heads up at times when I know he’s reaching his limit. Thank you again.

It helped me a lot to understand fluctuating capacity á la Stuart Shanker's Self-Reg - he has this theory that pressure on any of what he calls the five domains (which are things like cognitive, sensory, social) will reduce capacity in the others, which means less tolerance but also less ability to perform related skills.

It totally makes sense to me because e.g. when we're stressed, we can't usually manage to be as patient, and we might be less tolerant of sensory stimulus e.g. noise.

The same goes for DC. So whereas you know that the socks will be fine once they are on, he is experiencing all the pressure/demands of the fact he has to do this NOW, he will be going to school soon which is a transition which is difficult, etc. So they feel excessively tight and itchy.

And while he can probably tell you the morning routine when he's calm and happy, when it comes to the actual morning he is flopping around (seemingly) pretending not to know what to do next. It might be that he isn't pretending, even though he does know, because with everything else going on, he is really finding it difficult to access that information at the moment.

And then the other thing that was helpful is how we go into different states depending on how much of a threat our body is detecting - both adults and children, ND and NT. Everybody. It's just more apparent with ND little ones.

You're being far too hard on yourself. It sounds like you're doing a really good job. I have a 5 year old with ASD and mornings are always stressful and filled with me cajoling and hurrying, and sometimes they are just fully awful.

Some things that might help or might not, or you might have tried:

• minimize transitions. We do all upstairs stuff (teeth cleaning, washing) then come downstairs and stay there.
• follow a very set routine and maybe even do a visual timetable (even with verbal kids with no learning disabilities, they can really help)
• timers - if you can find one that visually counts down, all the better
• small rewards - put your clothes on? 5 minutes Lego time. Or even a tiny bit of chocolate. It feels awful but some ASD kids need that external motivation.
• we do a sensory circuit in the morning that does seem to help with calming and focus. On the other hand, getting my DS to do it is a pain and requires lots of nagging.
• you probably will need to help him more than other kids. That's ok. If your aim is a calm morning and putting his clothes on him helps achieve that, do it. Set "taking the initiative to get dressed" as a goal for another time.

Really though - my ambitions are mostly low. Get to school, pretty much on time, no one in tears. Stuff gets left everywhere. There is endless reminders and checking, and "can you please listen to me". And God forbid the routine has to change at all. It's just how it is, and I've kind of made my peace.

Absolutely agree with the nightly poo thing. We do this too, and it was a game changer once he started pooing every day (which also made pooing easier, which made it less of a thing, so happy circle). If you can get kids on board with this, and I appreciate not everyone can, it's so helpful.

Thank you so much for this, I can relate to so much of what you’ve said! I think I do need to cut myself a bit of slack and lower my expectations some days. Like you say, just getting out the door, vaguely on time, and with no one in tears is an achievement in itself.

I love your suggestions, especially the visual timetable and the idea of small rewards. We’ve used timers in the past, but I think I need to be more consistent with them. And you’re so right about helping more if it means a calmer start to the day. I need to remind myself that it’s not a failure to step in, just part of adapting to what he needs right now.

He won’t feel as though you let him down. He knows you are his safe place and safe person and it means that you take the brunt of frustration and stress. It helps him to let it out and you are the recipient.

My daughter is 12 and on the face of it she is what people describe as “high functioning” when out and about, or at school. But it all comes out behind closed doors. She didn’t actually go to school for a couple of years, but went back this year by choice and that means a huge amount of scaffolding has to take place behind the scenes.

There are often tears and sometimes meltdowns in the morning, even with routines in place. But the things that help us are:

• All clothes laid out where she can see them the evening before, including underwear and socks. Everything tidy with no visual clutter (I have to help with this a lot!)
• I take her breakfast in bed, and she eats it on a lap tray while watching her favourite programme on an iPad (I’ve given up on traditional parenting “rules”, if it works it works, including screen)
• When she is dressed and up (and until recently I used to go in and offer to help her get dressed( she doesn’t have physical needs but it helps the stress of the transition from cold to warm) then we look at the timetable for the school day again.
• Teeth brushing is a difficult one. Again, her age helps now as she cares about how she looks but until recently it was awful. It was our one non-negotiable though: bribe it needed, and I think money or chocolate are fine here!
• She always sits in the same seat in the car. I do the final checks for bag, water bottle etc or she will forget it things
• We always get to school early as soon as it opens (30 minutes before registration!) as she likes to be early and get in before it gets so busy

Of course, I am not saying that all these things will work for you with a 6 year old, but just some ideas that show that you can do things your way and that it is okay to put lots of support in. I help my DD get ready in a way that some might think is more appropriate for a younger child, or pandering, but I don’t care. Lowering the demands is what helps her to get into school and cope a little to start with.

After school: I have her bedroom ready. Blinds down, fresh pyjamas on the bed, favourite snacks and ice cold water nearby, weighted blanket etc. If it’s been a hard day then she might get straight into bed, and spend a few hours watching TV alone. I take dinner to her if she doesn’t feel up to sitting at the table with us. Again, that’s fine as it’s what she needs.

She is doing really well in life at the moment, and has a good social life and quite a bit of confidence, after a few really tough years.

I still feel like a failure on a very regular basis though. It’s exhausting trying to co-regulate someone else all the time though, particularly when it starts the minute you open your eyes!

My DD has got to a point where she will apologise to me when she has calmed down though and she has expressed herself that she takes things out on me and feels bad afterwards. I know how grateful she is for being there always and helping in every way that I can, because she tells me when she is calm, despite the fact that she spends a lot of time shouting at me! I guarantee that your DS feels the same way about you OP, whether he is able to articulate it or not. You are there, full of love and care and you are trying to help, and he knows that because children can feel it.

(Something else I was advised to do was to limit options at times of stress, whenever possible. So, instead of giving options for food, or asking if a child is hungry, it would just be “breakfast is here”, or just put the food where it can be seen and walk off. It made a surprising difference to us)