I apologise in advance for this post lovelies as it may just end up reading like a crazy woman’s rant, but in order to maintain my sanity in “real life” I need to exercise all of the demons from deep inside my psyche right now! Read More
Good morning lovelies!
I hope you are all well and enjoyed the long weekend for those of you who were lucky enough to have the time off.
So I’ve done it. I’ve created my YOUTUBE channel and I’ve uploaded a few videos. So far they cover all things related to Matthew and his sensory challenges, as well as the latest update being about my Mental Health. Read More
Last year I wrote a post all about what was inside my little boys changing bag, but given that hes now almost 3 and on the spectrum, I thought I’d update you all with the contents we consider imperative when leaving the house.
Matthew isn’t toilet trained, nor does he have any understanding whatsoever of the concept, therefore we are still very much reliant on nappies at the minute until such times as he is ready to come off them. I don’t imagine this will be any time soon however.
Matthew has Chronic Lung Disease and Asthma, therefore we can not and will not leave the house without ensuring we have all of his breathing equipment with us. We have been lucky enough so far (touch wood) that he’s yet to have an asthma attack outside the house, but it’s better to be safe than sorry.
Because of Matthews condition, he is often overwhelmed by the world around him and so we use Ear Defenders. These block out all overbearingly loud noises when we are out shopping or in a restaurant etc, and are a life saver for many children on the spectrum.
Like most children, they can become a bit frustrated and bored when out in public places, and Matthew is no exception to the rule. Therefore we always make sure we have some kind of snack with us that suits Matthews dietary needs, as well as water because my boy has a thirst like no other.
Again, like most other children Matthew often needs some sort of stimulation when we’re out the house. However, unlike most other children, he doesn’t really play with toys in a conventional manner and so we tend to stick to sensory stimulating toys that bring him a lot of joy… Enter the Bubble Gun!!!
As well as watching bubbles fly around, he enjoys toys that make sounds. This Maraca in particular is very stimulating for him.
But his absolute favourite thing in the whole world is a ball… and this one in particular. It is filled with glitter, it lights up, it’s heavy in his hands… to Matthew, this is the absolute perfect toy, and for that reason it comes everywhere with us.
Much like most other children with sensory issues, Matthew “mouths” most items. This can range from his own fingers to the tv remote. So we went on a bit of a mission trying to find sensory items that would give him the feedback he so desires from biting and chewing, but to no avail. Until we found this in boots. It’s from Nuby and it’s great. Matthew has chewed this until he’s blue in the face and it’s still on one piece. Would highly recommend this to mums/ dads looking for something to help their little ones.
Finally his Kindle. This has been a life saver to us in so many situations. It has prevented tantrums and meltdowns alike and we could not live without it. We NEVER leave the house without it and it is the best money we have ever spent.
So there you have it lovelies. A little insight into the contents of my toddlers changing bag. All of these items are necessary and invaluable to Matthew as well as us. It makes his and our lives that little bit easier when we go out, and we are so grateful to have discovered all of these wonderful items that make our boy so much happier about leaving the house.
It’s Wednesday when I’m writing this and I’m not long home from my son Matthews toddlers class. It’s a special needs group run by his Speech & Language Therapist, some Occupational Therapists and Early Childhood Assistants. He’s been there for over a year now and it’s made such a huge difference in his and our lives.
The only downside I’d say is that it’s exhausting for him.
Now, I know it’s only 60 minutes, but for the entire day after class as well as the following day he is just knackered.
Which made me think… How much effort is his little brain having to make to concentrate on what he’s doing for that hour.
We sing songs, we play with toys, we stretch and we practice basic communication skills. Nothing too strenuous. Yet my boy leaves class yawning and grumpy as if his little brain is bursting at the seams.
I’ve noticed that this has gradually become worse as he’s gotten older and after speaking to a few mummies of kids on the spectrum they agreed with me that it’s simply a case of ‘Sensory Overload’.
He tries so hard to get involved and pay attention to what’s going on in class, that his brain gets over-stimulated and works harder to “fit it all in” so to speak. As much as it pains me that one little hour a week takes so much energy from him, I’m also thankful for the class and all that its given my boy.
I know I’m not speaking for all parents of special needs kids when I say this, but I will be forever grateful for the services available to Matthew. He is lucky enough to have a team of amazing medical/ support staff who are 100% dedicated to helping him and encouraging his development. I’m aware of some parents going through the same thing who have really struggled to get the help they need, and I really do feel awful that their journey has been more of an uphill battle because of this. I wish it was the same across the board for all kids going through this.
Anyway this post has taken me the entire day to write because, well, I’m the mum of a toddler. So… I’m off to get this little boy changed and ready for bed. He’s managed to stay awake until 7.30pm but he’s fading fast so now’s my chance to make it a smooth transition from playtime to bedtime.
Take care lovelies,
When it comes to Autism and all things “spectrum” related, I have found that no two individuals are the same. There are similarities, but that’s as far as it goes. However, I thought that by sharing our experience of the things that seem to trigger Matthews meltdowns, that maybe it would be helpful to parents/ carers who are going through the same thing at the minute and don’t have an explanation for why there little one is acting out.
There is a big difference between a tantrum and a “sensory” related meltdown, and this is quite possibly one of the biggest misconceptions about children on the Autism Spectrum. Many people believe that their reactions are merely due to behavioural issues, and that discipline or lack thereof is the issue. However, parents or carers of “sensory” children will know the difference between a simple tantrum because there little one can’t get there own way, and a full on “sensory” meltdown that makes their child both mentally and physically uncomfortable.
Before I go any further, I want to reiterate that these particular triggers may not apply to you or your child. Each person reacts differently to different sights, sounds and smells. These are just the ones that we have experience with.
- Strong smells
It isn’t one smell in particular but we have found that especially at feeding time, if Matthew can smell the food he is being served, he will point blank refuse to eat it. Things such as fresh fish (despite him enjoying fish fingers) and eggs. Just having these foods within eye view upsets him, because of the strong smell they give off.
- Loud noises
There are certain noises that bother him more than others, but generally speaking this is a big trigger. Particularly the hoover or the hairdryer. He also gets very distressed in a loud social environment, unless he has a distraction such as a toy or is being held tightly by my husband or I. He is a lover of music, but gets very overwhelmed if it is extremely loud. He usually indicates that this is bothering him by holding his hands over his ears.
- Certain music
As well as being frightened by loud music, Matthew also has some particular songs/ pieces of music that upset him incredibly. These may seem like silly little things to someone else, but they aggravate him beyond measure. So much so that these are the worst kind of meltdowns he currently exhibits.
- Tastes/ Textures
I put these together because they seem to go hand-in-hand with Matthew. If I give him something to hold that has a strange or abnormal texture to him, it’s as if he can taste it in his mouth. He grimaces and gags at the feel of it. This is the exact same reaction he has when he tastes food that he doesn’t enjoy. It’s a very physical reaction, where his body is almost not entirely in control of its reaction.
I hope that this has been useful for anybody who is going through the diagnosis process at the minute. There is a lot of information thrown at you when you first suspect your child may have “sensory” issues and it can get a bit overwhelming. Please feel free to have a look at my previous posts regarding our journey so far…
Ok so I know it’s only October, but having kids means you have to step up your organisation skills, and despite previously being a last-minute-shopper, I thought I would get a head start this year, saving myself the annual festive stress.
This is where it gets tricky.
My boy has a bedroom, full of lovely, thoughtful and often expensive toys… that he has NEVER played with. They are quite literally still in their boxes.
He just doesn’t have any desire or understanding of why or how he should play with them, and he’s not the only child out there like this.
After reading up on other sensory-parents blogs, it would appear this is merely a characteristic of his condition. He likes what he likes, and generally this is something that stimulates his senses.
Thankfully there are a lot of things to choose from due to the rise in Autism and Sensory awareness. I’ve picked ones that I will most likely be purchasing myself for my little boy, but have a good look around all the websites I’m listing as there are some great ideas.
So there are a few good ideas for those of you with sensory-seeking children like my boy. I’m sure there will be toys amongst this list that Matthew loves as well as loathes entirely, but I definitely believe these are the best kind of items able to offer him the most satisfaction.
Let me know if you have any other suggestions that I haven’t listed here.
In my last update I told you all how Matthew had responded so well to his song bag that we were set another challenge of getting him to engage without the use of songs/ singing.
It definitely was a challenge but we knew what we had only one thing to work with, Matthews love of playing with balls. Other than his songs, this is the only thing that really grabs his attention, and in all honesty the only toy he has the time of day for.
So his dad set out to make a game out of Matthew giving dad his ball, dad saying “Ready, one, two three”… all the while Matthew has to maintain eye contact and wait patiently for his dad to spin the ball.
As reported in my last post about this, it was a success, and I’m happy to say we have been able to maintain this with lots of hard-work and concentration from my boy.
So I should be happy shouldn’t I?
But I am so far from it.
All I feel right now is frustration. Total and utter frustration.
It all seems to be moving at such a slow pace, and even though I am fully aware that there are no overnight miracles, I just feel like we are hardly any further than we were away at the beginning of this journey.
And the worst part is that I feel so selfish for feeling this way.
I’m not stupid.. I know how hard this has been for my son… And I know how hard he works at the tasks and challenges we give him.
I just wish it wasn’t so complicated and so drawn out.
I was out with my family today and we took Matthew and his big cousin to our local Soft-play, a place Matthew generally hasn’t been a fan of in the past, but I thought we’d give it another try.
Fortunately, my boy handled the environment so much better than he had before, opting to play in a corner by himself of course, but unfazed by the noise and hoards of sweating, screaming children around him.
I find that as long as he has a little corner in any room hes in, he can contain his anxiety and generally doesn’t notice anything going on around about him.
I was so proud. This was such a big deal, and I know these milestones are very worthy of that pride.
But that lovely, warm feeling in my tummy dispersed quickly when I saw (and heard) a little toddler chatting to his mum. He was younger than Matthew and he was asking his mum for “a drink”… and then if he could “get a snack”… and finally the killer blow… he gripped onto her and said “love you mummy”.
It was like taking a bullet to the heart.
And of course this was followed with unwanted irrational thoughts and questions that started whirling around in my head.
“Is he just much more intelligent than Matthew!?”
“Are we doing something to hinder his development!?”
“Will he ever speak!?”
“What if he never speaks!?”
I was so disappointed with myself for thinking it, and for dismissing the amazingly prideful moment my boy had given me.
But, being honest with myself, I am so scared that we won’t ever reach those bigger milestones. That I won’t ever hear him tell me he loves me. It hurts my heart to even type those words.
How do I get over this… What do I do???