Down Syndrome

Down Syndrome Behavioural Changes age 8-12: 'NO, MAKE ME!' are you serious you're 9??

So after thinking he was doing really well with all the change in his life and patting myself on the back for doing a great job in the transition so far, this week came a spat of behaviour issues with Kyd that we haven't seen in a long time.... or ever in some cases.

Now I'm not sure that it is due to the change, the heat, his hormones, his belly pain, his age, tiredness... or a mix of all of them but he's gone from being lovely and helpful to being a completely stubborn and an arrogant little....... you get the picture.

Although this week has been a bit hit and miss, cuddles one minute and tantrums the next, this morning has to have been the worst morning he's had in a long time. He has never been a morning person. He has never really slept well enough, due to sleep issues, to be refreshed enough to jump up like other kids at stupid o'clock in the morning without help or encouragement..... which has actually been quite nice at times!

He knows I can't move him any more due to him being so heavy and strong and now because I'm 31 weeks pregnant with a big fat bump in the way it's another barrier. He decided today was the day that he would use this to his advantage though, even coming out with your regular teenage phrase... 'No, make me!' with a shrug and such a horrible look in his eyes..... I'm not being funny but I wasn't expecting that at 8am or in fact coming out of his mouth at all! All of a sudden he's aged 5 years over night and become a teenager. Where has my baby gone? and who the hell is this tiny teenager they've replaced him with? He's 9! not 14!

It took everything in me not to cry at that moment. I felt like he'd just drained the fight out of me with one sentence. How can he have all of a sudden become so horrid. He was always so lovely...... OK he had his moments but even with those moments he would still do as he was told after a stern voice was put on. I felt useless. Like he'd won a fight that we shouldn't have even been involved in for another 5 years. I know my hormones are all over the place and I do feel a bit useless not being able to do certain things with this bump in the way, but not being able to move your 9 1/2 year old son to discipline him, just hit home at that moment.

He didn't really go through the Toddler/Terrible 2's stage, I had it easy really. I always joked and said it would catch up on me eventually but I was hoping that it would stay just that.... a joke. I am starting to think it's come to bite me in the ass right now. I can understand how much emotional strain there is with a toddler and the worry and panic about what's the right thing to do and what approach is best BUT at least with a toddler you can lift them out of the situation to discipline them..... well if you can catch them that is. With Kyd and his age, height, weight and strength I have no chance of even slightly budging him, let alone picking him up to remove him out of the situation. So if there is danger around him at the time I'm screwed!

I'm worried now that after all the hard work we did with trying to help him understand the change coming up with the baby etc, has he not taken any of that in at all and if not what now?? It could just be that he hasn't slept because of the heat etc. It could've been that he's due for his weekly meds so his belly might be hurting, so he's reacting to the pain and that has effected his sleep too so he's also tired on top of that.

BUT It could also be Puberty...

I know he's only 9 but it has been said that Downs children begin their move into adolescence and puberty and all the issues these bring from around 8-12. I have noticed a huge difference in him over the past few years but not as significant as the ones recently. There are a lot of demands on a child with DS during the ages of 8-12. It is not always easy for a child with Down's syndrome to understand the rules of things in general at any time. For example, a child with DS will need to be helped to understand what is public and what is private behaviour more so than the average child. The only way I can help with this is by encouraging age appropriate and socially appropriate behaviour.... this is harder than it sounds. I've been trying bit by bit to ease him into it but I have no idea what he understands about it and what has just caused more confusion. Remember that emotional and social development may not develop at the same rate as the physical changes in a Down Syndrome child so it's hard to find a balance when discussing the whole thing. It is so frustrating as a parent to not know what he is thinking or what he knows and doesn't know. I can't imagine how scared, confused and frustrated he is and he can't even speak about it because he hasn't got the language skills... I think I'd act up too if that were me. But I can't let him get away with bad behaviour either so it's like catch 22.

Health issues can cause behaviour changes too though apparently. Such as an underactive thyroid can cause lethargy, weight gain and changes in behaviour.... but he's been tested recently and all that is fine... so that has a slash straight through that on my maybe list!! His belly isn't very swollen this week but it could still be hurting him. His bowel problems and constipation cause serious pains in his stomach but he is so used to it he just gets on with it. When he's played up in the past it has been linked to the pain caused by this and the lack of sleep it can cause. He has also always had issues with his sleep from his early sleep apnoea to general waking in the night and not settling because of several other issues. The heat at the moment probably didn't help last night with that to be honest.

In the heat of the moment this morning though we were having a huge stand off. He ran out of the front door and I had to catch him as there were cars moving about on the road, which resulted in a slapped bum (lightly slapped for all those who are just about to phone the social) and a lot of tears... and all this just before he went to school! Brilliant! We discussed the whole thing on the way to school as calmly as I could so he understood why he was being told off and he seemed to be sorry... but I'm not sure he knew what he was sorry for. If I had left it until later he would've forgotten what he had done and it would have caused so much confusion. I had a word with his teachers when we got to class, late I might add, to inform them as to why he was so teary by the time we got to them. They understood and said they'd discuss it and keep an eye on him.

This isn't the first time this week we have had to have words but it was the first time it had got to this stage and I told him that today was his last chance and that he would now have his Playstation etc taken away for a whole week, which just added to the tantrum... and it would only return if he behaved all of next week.

The only issue now is, he is going to Respite this weekend straight from school so I won't see him until Sunday Evening.... when he returns he won't have a Playstation but will he remember why? Or will he spend all weekend thinking about the fact that last time I saw him I was angry with him.... ruining his weekend away and causing problems with the respite carers.

God dammit this is so hard to understand for me let alone him!!

I am praying this sinks in and that he regains his behaviour. I don't think I could deal with this and a newborn baby... here's hoping!

Cross your fingers for me please!

Sorry this was more of an 'I need to get this off my chest' rant than anything else so please ignore me if it sounds a bit woe is me!