Question for parents of ND children

[Sprookjesbos]

Hi all

7 year old has been referred to community paediatrics for assessment for both ADHD and ASD.

It has been a very bad start to the school year, huge anxiety about going back which plagued the second half of the summer holidays, then morning meltdowns throughout week one which made us late every day.

This last week he has settled. He has settled in every respect - he's calm, he's regulated, he's able to handle disappointment and frustration (eg he lost cluedo last night and said 'that was fun!' and I nearly fell of my chair because I was readying myself for the board to fly).

My question is: have you found traits have suddenly worsened in your children over a couple of months, and then sort of faded again? I know all children have ups and downs, but I feel I could almost plot a timeline for DS and there are months at a time where I have been convinced he has autism and every day has been challenging, then overnight he has settled again. During the settled period he still has some differences to others (can't be quiet, sings rather than talks a fair amount of the time, fixates heavily on certain things) but he's absolutely not an issue.

Last November he changed almost overnight. There was a before and after last November and nothing of significance happened that we can pinpoint that might prompt it. He had meltdowns every day for 3 months, then settled again until June when it stepped up another level.

I guess I just want to know if this is a usual developmental thing for ND children or whether I should be looking for something else causing these changes.

Thanks 🙏

My child is 17 and female but my experience was and is yes.
Id be out of my mind with worry, she’d be in a bad way and then from once the explosion of emotion abated there would be a relative calm. Until the next issue….

Yes and it often followed a school year cycle.

Now it's more hormonal cycles!

That's so interesting, thank you.

To be honest me and my DH feel like we're going mad because everything came to a head last week, school swooped on him and were talking about waiting lists vs private assessment... And now we're wondering if we are trying to diagnose a "typical" child. Then I remember how absolutely horrendous our summer holiday was!

Yes, very much so. I presume there will be a combination of reasons, but for us it often has been a sustained period of overstepping the boundary of "where I can cope" which sets this sort of episode off.

So to give an example. Child can cope with up to 8 blocks of energy but actually would be better at maintaining 6. Imagine placing them in a tower. Say they use up all 8 blocks a day whilst at school.

They "appear" to be doing ok at school, but if any other situations arise, say suggesting they try out at a sports activity, or they are invited to play at a friend's house or any other everyday thing that a NT child would experience, this will add on more and more blocks to the tower.
At this point the tower falls and you are left with a tower of say 4 blocks. Now you start with a prolonged period of time where even being at school is too much and child cannot relax even when at home. It takes a long time to build back up.

In our experience we have had to monitor closely the sustainability and keep the amount of energy required by child to function at the lower end. By doing this they feel relatively relaxed at school and definitely relaxed at home. This means that they have the energy to cope with extra things that are either necessary, say medical interventions or enjoyable such as school residentials, trips to theme parks with friends etc.

Yes definitely can be very up and down with my 14 year old daughter. School can definitely cause it, she masks so much then burnouts very quickly. Hormones too have a big impact.

Absolutely.
But, as a ND parent, you become an absolute pro at reading the room.
Anxiety is a chronic bedfellow of ASD/ADHD. And it’s something that needs constant management and support.

Home is our very quiet space.
Home must be the sanctuary where you leave the world outside. Play dates have never been a thing and nobody is missing out or sad about it. Honestly, that my 10 year old has never had a sleepover is fine by him! That hasn’t stopped him from developing really good friendships with other kids. He has had wonderful birthday parties. And definitely his life is less social than his two older NT siblings but he’s totally fine with this. So, don’t get worked up by your DC’s differences!

DS was diagnosed at 4 so I’ve had years of working with my initial question: Ok. So, what environment do I need to cultivate to bring as much peace to our day as is possible?
School is always going to be a stressful environment. And often, ND people feel as if they’re upsetting others or annoying others because they function on a different level (a higher level, in my opinion! But I’m biased). So I keep that sensitivity in mind all of the time and try and help DS squeeze into the world that’s not quite designed for him as best I can without making him change who and what he is.
There’s a lot we can’t change, as a parents, but we can create a supportive environment and cultivate ways of living that encourage better coping skills and approaches to the more challenging aspects of the day.
School doesn’t have to pull out all the stops. If it’s mainstream, it can’t pull out all the stops anyway and it can’t be that perfect source of support. But it can be good enough! And that matters. Also, most teachers aren’t SEN trained. So, patience. Guide them.
Help teachers to help your DC. Ask for sensory walks/breaks from the classroom and develop a good bond with the SEN lead who will help communicate your DC’s needs to teachers. They can’t remove the challenges, but they will certainly work to support your DC when facing his challenges and possibly even cope/overcome some of them.

Lots of sleep.
Magnesium supplements during times when tics/agitation/anxiety is a bit ‘extra’.
ASD people can (not always) have a bit of harder time with team sports and quite often aren’t as active as other kids their age because of this. In this country, we’re so hyper focused on team sports which tends not to be up ND people’s alley. I mean, honestly, there are plenty of neurotypical people who don’t like team sports either. Mine loves running, swimming, cycling- solo sports. He’s not ‘sporty’ but he’s good at these 3 activities.

See if your school has table tennis. One of the TAs taught my son how to skip rope like a champion. Hula hoop is another thing he was taught. Our ASD kids shouldn’t have to sit on benches at playtime. So many do. But a kind and thoughtful TA can make all the difference. Get the SEN lead to advocate for your DC so that school gives him the positive aspects he needs to help him cope with the challenges.

Try and help him get fresh air and some movement each day. Walking to and from school shakes off the bugs, the anxiety, and agitation that can build up in the classroom. So if you can walk instead of drive/bus/train, try to as often as possible.

My ASD DS will start secondary next year, which I’m anxious about because that’s where compassion for students goes out the window. But if you can learn to be a ND parent now, while your DC is in primary and while you can communicate his needs/advocate for him, you’ll be better equipped for those teen years. 💐

Absolutely, I blame hormones as I've seen it with DD literally like clockwork and they both DS too, got progressively worse through puberty, DS12 is only part way through this stage. He's not settled back into school well at all so school are starting things such as only in then class when teacher is explaining the work then he goes off to the learning hub to work with a TA, he's dropped a language so more down time at school but it's still difficult for him. DD16 is year 11 and only studies from home now, hopping she's going to be able to attend college (arty so mainly ND students)

My DD is recently diagnosed at 17 but I recognise so much of this in her. We didn't parent her with that knowledge but I think our home and parenting style has suited her well. She was diagnosed with OCD and anxiety at 7 though, so we have responded to this.
I think my advice would be to put any expectations you had to one side and take the lead from your child. Be more proactive for them than you would need to be for a NT child.
We found high school tough as DD was very clever but emotionally later than her peers. School were very good at addressing specific issues if we contacted them.
Cycles of behaviour and regular periods of dysregulation we have seen too. Irregular jumps in maturity and understanding. But she has done well at school, has good friends and is thriving. I suspect she has to deal with more introspection than most of her friends. OCD is for her a manageable but ever present issue.

Tbh it seems the standard times to have difficulties within a year.

School holidays/first month of new school year. A lot of change and anxiety around new routine, new people, expectations and a whole load of change.

November - school start to get ready for Xmas. Loads of change and 'fun'. Lots of expectations for and from the children. Routine gets shot again.

June - school start getting children ready for end of year and moving year groups, meeting teachers, lots of fun at school which again changes routine and throws the kids through a loop.

Yes, think of your child as a bottle of fizzy drink. Day to day life gives them so shakes but they can usually hold it in so whilst they might be bubbling up inside, it’s contained. Sometimes the shakes are huge or they go for so long that they can’t keep it in so they explode.

Thanks so much everyone.

@JumperStripes I get the fizzy bottle thing, and this absolutely applies to my son. During difficult periods he will explode literally on walking out of the school gates, or lie down on the floor and sob that he can't walk after something fairly minor (eg sister bumped into him, wrong snack, reminded it is swimming lesson time!) What I'm saying is he will occasionally go a couple of months where he doesn't do this, and remains fairly regulated all the time.
@LucyLocketLovesPollyPocket that does make sense, put like that!
@Beamur thanks for that perspective and I'm so glad your DD is doing well at secondary as the thought of it for my boy terrifies me!
@SerenityNowInsanityLater your very detailed post made me quite emotional to be honest, thanks for sharing all that. We are quite new to this way of thinking because DS has just turned 7 and to be honest up to now I have been told his behaviour (which was mainly just meltdowns) were in the range of normal. It's only in the last year I've accepted his emotional regulation is outside of what you'd expect for his age. In addition to that, he has developed very anxious behaviour which he didn't ever have before and that's now linking into the meltdowns. He has just changed so much in the last year.

You're right we need to look at keeping an environment that keeps DS regulated. He so loves a birthday party but if he goes to one we clear the rest of the weekend and we expect him to be impossible for the rest of the day. we do very little with the weekends generally and often either me or DH will take our other DC out and the other of us will stay with DS at home. We sort of fell into this pattern anyway and it's only since this summer when he really stepped up a notch in terms of how challenging he is, that we started asking ourselves whether other parents needed to parent this way... And we realised probably not.

Anyway we have had a fab week which prompted me to post this question and then tonight he got so upset at his story time being over at bedtime that he lost it, ripped all his sheets off his bed and rolled up into them on the carpet, screaming. So the regulation didn't last long!

I'm glad we're not alone though, because most of the time we feel like we are.

Yes there's a theory called spoon theory. The idea being that if you have ten spoons everything is going great and if you have zero spoons you are in full blown meltdown.

The way I see it is when my son has quite a lot of spoons he copes well - school, games etc. He might lose a few spoons in the day but still has enough to get by.

When he's massively struggling and low on spoons he gets to meltdown much easier.

So sometimes he copes with stuff and sometimes he doesn't depending on where he's at

Absolutely, the school year lends quite a bit of influence. Start and end of terms, run up to Christmas, birthday etc. Anything that makes him anxious or excited makes it more difficult to cope. In September we have new school term and his birthday and it's HARD. There are times when I think that I'm over reacting and he's 'normal' and just like his friends but then others when it's as clear as day.
Today he had friends over for his birthday, just to play switch, get pizza and play. They had a great time and it wasn't too wild. After we played a new card game he'd got as a gift. His attention span was miniscule, he was up and down, distracted, giddy, couldn't sit still, knocking the cards everywhere while his brother who is 4 years younger never did any of this. At another party a few days ago I witnessed ignore a friend (multiple people actually) asking to to play as he was focused in where he should put his shoes. Literally didn't know that child was there talking to him.