Hair Cut.

31/366.

Here you are proudly showing off your new haircut. You excitedly came home and told your dad - "I have spikes!". You were so brave Asher. I remember your first haircut like it was yesterday. You threw yourself around and cried so hard you had drenched your shirt and the cover in dribble with hair stuck in it. I felt awful. This was before your diagnosis of SPD. I'm more prepared now. You had Cedric the weighted snake sitting in your lap and we got through this together with a little help from a DVD. Well done Asher.

Learning.

8/366.

Originally I started this blog as a place to document our journey with SPD, so when I was stuck at the end of the day with no photo for Asher I thought this was a perfect excuse to talk about how we help Asher to stay calm.

To find out more about SPD please see this post which also has a link to the SPD Australia website.

Asher is a sensory 'seeker' (he is also defensive, but for this post I will just be talking about how he seeks or craves sensory input). He spends a lot of his day, and I mean a lot, banging and crashing to give him the sensory input that he craves. I tell people a lot that Asher bounces off walls and I mean that literally, he will crash into walls. To help him we have something called a 'Sensory Diet' that we are implementing, this is a diet of activities at specific times of the day to give him the proprioceptive input he needs to be able to concentrate on his day and participate in day-to-day activities like other children his age.

Since his diagnosis I have discovered all sorts of products to help Asher reach his full potential. The one pictured is for Asher to chew on. Asher will seek out random objects to bite or mouth, and if unable to find something else will bite himself - which leaves marks all over his arms. This product is attached to his waist band and he is able to chew whenever necessary. Chewing also helps calm him by giving him the input he needs when in a stressful situation - like a shopping centre. Asher needs a lot of reminding due to his age, but our aim is to give him the tools to allow him to self regulate without my help.

I'm still learning a lot about SPD and how it affects Asher every day. As his communication gets better he is able to explain to us more. Just the other day Asher told his dad that all the people at shopping centres make him feel funny (sensory overload). We had guessed this was part of the issue while shopping, but it helps us to help him when he is able to tell us.

Real.

6/366.

At dinner tonight you got spaghetti in your hair. For a lot of other children this would just mean that their hair would have to be washed, they might cry and scream, but it is something that would be over quite quickly.

For you, this means a lot more. I mentioned to you that I would need to wash your hair because of the spaghetti in it and suggested you lie down so I could wash it without getting the water in your eyes. I could see the fear instantly. You started running your wet hands through your hair and told me it was all clean. I repeated my suggestion, but the crying started and I knew I was just going to have to get this job done. Now.

I have to hold you in the bath. I've had to splash water all over your face because I'm trying to keep you in it, safe from falling over and trying to get it all washed as quickly as possible. You start hitting yourself in the face, the screaming is so loud I wonder why our neighbours don't report me for child abuse. It's then done, I wipe your face and get you out of the bath. I am secretly happy because you didn't start dry retching. After wrapping you in your towel you walked to the lounge and sit down, giving me this face.

So while this might not be the most 'delightful' moment of our day, it's very real. It's Sensory Processing Disorder and how it affects you Asher. I wish I could make it feel better, I wish it didn't make you feel the way it does. I'm so glad we found something together to purchase so hopefully next time might be a tiny bit better. Because 3 years of this has been long enough.

Laughter.

5/366.

Dear Asher,

Today was rough. You were back at day care yesterday for the first time in 2 weeks and the sensory overload was just too much for you. We had meltdowns a plenty. There were tears and some shouting, sadly not just from you.

Sometimes I find it really hard to be patient and for that I am sorry. I wish I could help you at all times. I try my best to stay calm, but sometimes it can be difficult. Please know that I always love you and know that I will try my hardest to help you through everything. Please know that I will always be your mum and your advocate.

Bath time tonight was full of laughter. You were squirting Layla with a water bottle and your chuckle was infectious. After a long day it is my favourite sound. Thank you for always being you and for always loving me enough to know I make mistakes and forgive me.

Mummy.

Successful Trip.

Those that have children with special needs will know what I mean when I say that a special outing out generally ends in meltdowns and it's just not worth it. Paul and I haven't planned anything since we went to the Zoo. Almost a year ago. Crowds set Asher off, noises, light, tall things, etc.

But recently we decided to try to visit the Farm Barn in Hahndorf. Today was the day. I packed his bag with his tools, his earmuffs (which did come out), his chewy, a fiddle toy, his sunglasses. We arrived nice and early and there were a few groups of people there. Asher did quite well to begin with, and once the farm show ended up being more of a talk about the history we took Asher out to meet some of the larger animals. He had a ball. Well, that's an understatement, he was in heaven. He pet the dear, watched the emus, met the ponies, saw a peacock show off. We headed back in after we noticed the other people had left. We had all the guinea pigs, bunnies, lambs, chicks all to our little selves. Asher was very gentle, he pet the animals again and fed them carrots. Both he and Layla had the opportunity to feed a lamb each a bottle of fresh cows milk from Daisy, who they had seen milked earlier.

But the most surprising, touching moment of all? When he gently cradled a guinea pig in his lap and held a carrot for it. My Asher, the boy who runs nonstop, doesn't understand what walking is, who jumps, bounces, runs full pelt into people, he sat on the stump of wood holding that guinea pig for at least 10 minutes, more like 15.

This mumma couldn't be any prouder.

Overloaded.

During the school term we go to Kindergym. We go for both children, to help with their low muscle tone issues and to help Asher get some of his beans out. Today was our first day back after a two week break for school holidays. We started preparing Asher for it yesterday, telling him we would be going today. His face would light up while talking about it.

Once there he was so excited. When it was our groups turn he ran in and instantly started following an obstacle course. One of his little friends arrived not long after that and Asher was in his element. At one stage they do a group time. The children do some movement games while the instructor uses a microphone so everyone can hear her. We know that sometimes this can set Asher off and we are sure to sit on the opposite side to the speakers.

Today was a bit different though. He was reluctant to join in, he just sat in my lap watching. I sang and tried to encourage Asher to do the actions. Finally I looked down and I noticed he was biting himself - a sure sign that he was having a sensory overload. Instantly I removed him and we rushed over to our bag. I had packed his 'chewy' and Asher quickly started biting down on it and we used a weighted product in his lap. He asked for his ear muffs, which I had typically forgotten. He was able to calm a little and wanted to join back in and play with his friend.

We avoided a full blown meltdown, which I am so thankful for. But over an hour later I could still look at his hand and see the little bite marks. I'm trying to not let myself feel too guilty, so instead I have decided to put together a little bag of goodies to leave in the car that will help him while we are out. Why didn't I think of this earlier?

Preventing a Meltdown.

Today Asher started getting a little silly. He began throwing toys, running into things, jumping on the spot and pushing his sister and his dad. Instantly we knew how to help him. Paul encouraged Asher to sit down, we put the TV on and placed his weighted blanket over his lap. A few minutes later Asher had relaxed - crisis averted! He was even able to answer with a 'yes' when Paul asked him if he felt funny inside.

6 months ago this wouldn't have happened. We didn't know how to help him then and didn't recognise the signs of a sensory overload. His behaviour would have escalated. Someone would have got hurt, Asher would have been told off and a full blown meltdown would have happened. A meltdown that could last an hour and a half.

So what have we got in place to help him? We follow a sensory diet daily, Asher goes to OT once a fortnight. We have a 'fiddle box' full of sensory toys for him to explore. We've bought a weighted blanket and snake (called Cedric!), earmuffs, chew toys. We make sure that when we go out we take some of these things with us. Not every situation like the one I described earlier ends so well, but we are so thankful that we have learnt enough so far to help him, even just that little bit.

What is Sensory Processing Disorder?

So what exactly IS Sensory Processing Disorder? A lot of people ask me this question and I've found it really hard to explain. This is from SPD Australia;

"SENSORY PROCESSING DISORDER (SPD) is a complex neurological condition that impairs the functional skills of 1 in 20 children. People with Sensory Processing Disorder (SPD) misinterpret everyday sensory information, such as touch, sound and movement. They may feel overwhelmed by sensory information, may seek out sensory experiences or may avoid certain experiences.

People with SPD experience their world as either Hypersensitive (over reactive, sensory avoidance) or Hyposensitive (under reactive, sensory seeker). They may also present with motor skill problems. They may react with strong emotional behaviours and experience what may be described as ‘melt downs’.

The brain and nervous system receive input from body parts as well as from the outside world. The central nervous system is also a means of transmitting messages throughout the body and functions somewhat like a computer system. The messages that are transmitted, however, affect functions such as muscle movement, coordination, learning, memory, emotion, behavior and thought. As with a computer, a breakdown or malfunction in one part of the system often affects other functions of the system.

Sensations from hearing, vision, taste, smell, touch, pressure, and movement provide the input to the brain which is organized for movement, cognition and learning. The richness of the sensory environment and the interactive experience of the individual with the environment contribute to optimal development of function.

When there is a Sensory Processing dysfunction, it is hypothesized that the brain does not process or organise the flow of sensory impulses in a way that gives the child precise information about themselves and their world.

As a result, learning can be difficult and children may feel uncomfortable, or have difficulty coping with the stress of daily sensory and organizational demands. This often results in additional or behavioural difficulties."

So what does this mean for us? It means Asher doesn't like loud noises, vacuums send him hiding under the table, crying hysterically with his hands over his ears. Hair washing can cause him to vomit and self harm. He doesn't like shopping centres because things are too tall, too loud, too bright. He has frequent meltdowns. He needs time to un-wind and is limited with the amount of stimulation he can handle in a day. He needs help to regulate his senses. We need to follow a 'sensory diet' to help give him the sensory input he craves on a day-to-day basis. He needs extra help trying new things, with play and learning how to control his body.

But you know what? He's a happy, bright, beautiful little boy who doesn't understand the words 'too loud!'. He loves to run and bounce. Asher is affectionate when it suits him, as long as you know just how to give him the right type of hug! He enjoys outdoor play. Dora the Explorer is his current favourite TV show, followed very closely by Diego.

Asher is a very special little guy and I am so blessed to be his mumma.