A quiet day

It rained for most of the day so i spent it at home with Harper, who then slept for 2 1/2 hours so i was by myself- it was extremely quiet. 

I put music on and got a lot done.

He woke when i had a meeting for Kanye. A lady came to talk about his needs for a high tech communication device ie an ipad or ipad mini. Currently he is using his podd book which has a lot of symbols in it that helps with us communicating to him and vice versa but its often not fast enough for him and he gets impatient. 

So she'll go speak to Kanyes school and get an idea of what he can do in terms of his fine motor skills and we'll get to trial what she feels will be adequate for him.
 Once trialed she then applies to the government on our behalf for funding for it.
So might not be until next year we get it but seeing as we have been on the waiting list for over a year that's really not a long time to wait to actually receive it. 

What i told her is i think Kanye will be able to link together symbols faster and be able to communicate better with an ipad rather than his book- though we'll still use it, its quicker to flick the screen than to turn to the right page which he cant actually do because he doesn't possess the skills to turn fine pieces of paper in a book.


I went to get Marley this afternoon and his teacher pulled me aside which always means an uh oh in my head. She said that some of the children in class recently have been making comments to her about how Marley talks at times (can be staggered almost stuttered) and how he behaves sometimes. 
She said that it wasn't a bad thing , he wasn't misbehaving just now and then traits of his autism shone through a bit more and the children getting older were noticing it . She wanted to know if it was ok if she explained to the class that Marley thinks a little different and does things differently sometimes.

My heart sunk. I wanted to cry. I knew where she was coming from and i was grateful she would word it so gracefully but still you know to have her explain that Marley is different really kind of felt like a stab in my heart. Hes such a sweet wee guy and apparently doing so well since getting one on one support for his maths in only 2 weeks since it began. 

But its better for the kids to know than for them to leave him out because they don't understand why he does the things he does and kids are very accepting, i mean with kanye they looked out for him and if they were curious they'd ask questions and the answers we gave were  satisfactory to them.

Still you know .... sigh . Anyway. It poured down on our way home and with a heavy heart i followed Marley home, both soaking wet when we arrived. He doesn't even know. Hes not even bothered most of the time about anything that goes on at school he just goes with the flow.

I emailed the special needs co ordinator at school when i got in who knows us she was there for all of Kanyes time at mainstream school, helping him, sorting his curriculum and teacher aid time She has known Marley from when he was 1. 

She said that 'We have and have had a number of children with Autism.  Many learn and come a long way but they can stand out for the different way they learn or act.  Often it just needs explaining and there are some fabulous books to read to kids to explain how some children learn differently.  It's a great lesson for the children and they are often the ones that teach the child with autism the social cues they lack'.




So that was in a way a relief. I guess my mind instantly went to how it was for Kanye that the gap between he and those of his age n his class grew really wide. Kanye is still so high needs but mar is high functioning meaning he is capable. 
She felt there wouldn't be a problem with him at mainstream through his schooling and that if he gets the permanent ors funding they are applying for (which lasts until hes 21) he'll really improve dramatically.


Marley has been out of sorts this week, today his teacher said he lay down in class a few times on the floor saying he was tired. Perhaps it was the busy weekend, perhaps it was that it was a 3 day weekend or perhaps hes getting sick again or a combination of all 3. I don't know. The way hes behaved is very similar to the way hes been in the past when we've said what is up with him then wah lah hes sick. I'll wait and see. We have a quieter weekend coming up so perhaps that'll help.


Kanye is having sleeping issues too. We're seeing the neurologist who is kind of also his paediatrician now handling his general health as well as epilepsy. Kanye has been hard to get to sleep since his seizures last week and when he does hes waking regularly until around 10 ish meaning our whole night is gone taking turns sitting with him waiting for him to drop off. 


Tonight though i noticed he would sleep if i rested and put a bit of weight in my hand resting on his, so once i felt he was nodding off i grabbed the wheat bag and put it on his hands and  hes so far stayed asleep. 


I talked with my friend who is master sewer and runs her own business which you can see here. She offered to help me make a weighted blanket for him, just a wee one that covers his upper body. Its been suggested before but to buy they cost 2-300$ which you know for what seems like many a wheat bag sewn together rather steep in price. 


But they work, especially on kids like Kanye and they also can help keep them calm while out. Kanye has sensory dysfunction so he cant handle light ouch but tolerates pressure, he cant cope with bright lights ie malls and lots of noise can be overloading. 
All these things can be too much to take in and often what children like Kanye do in response to be overloaded is to meltdown and make noise to counteract whats coming in. 


Headphones when out are amazing- bit of wiggles playing and we can walk him through a mall especially if he can also watch wiggles too we can go through and he doesn't even bat an eye so i'm really hopeful this weighted blanket will work (and so very grateful my friend is giving up some time in her busy life to help me with this i really do appreciate it) and give him the reassurance he wants from having someone essentially hug him/hold him. I can only imagine his neurologist will want to increase the night drops hes on now which help him sleep. Well are meant to anyway. 


So yes a quiet day but i did enjoy sitting this afternoon drinking my coffee and looking at my herbs in the tub which looked so much leafy-er and lush in the rain perhaps i should water them more.