Let Know Family Fall Through the Crack

Let know child or family or even adult slip through the net!!

Being a parent with children on the autistic spectrum, who have had late diagnosis of their issues and who has been somewhat let down in many ways by the system that needs a radical overhaul.

It has always bothered me about why it took so long, for not only us as a parent to notice but also those that should be able to spot it but didn`t to say hang on something is not quite how it should be.

I think sometimes it is not brought to attention because it can be an awkward conversation to have with a parent and you don`t know how they will take it and maybe you avoid it because it might cause an outrage back lash which sometimes it truly does.

But when working with children we always have a responsibly to put the needs of a child above the feelings of the parent if it means the surrport for the child to advance and thrive is met.

Just like when a parent notices and brings it to attention of schools and doctors but gets the saying there perfectly fine here.

Autism can be different in different settings you can have a child that displays certain behaviours at school but doesn`t at home or they can display the behaviours at home or not at school.

Ultimately parents don`t want their child to be labelled schools don’t want to label children and neither do doctors but for some it a must for them to be able to adjust and make progress and also to thrive.

So I guess as a parent and someone who works with children with additional needs I want to know what I can do or say to bring these topics into the forethought of others minds, to affect change so others don`t full throw the cracks.

I want to be proactive in change to minimise the damage to children and families out there, to help our world change from thinking that society is only perfect if everyone was the same individuality is an important part of growth in society.

Society on a whole cannot expect others to change if it is not willing to move with the times and see what it is doing, by having these ideas about what is normal or not normal, the world has advanced so much technology wise and that is helping our children to be more advanced and more ripe for learning then most of us ever were. It is opening many different ways of learning and experiencing life.

One of the area of change I see we need in education and also child development and how to avoid missing even just one child that needs help is the developmental checks they seem to stop once it gets to school age, what about those children that these issues don`t show up till seven years of age or 12 years of age, these are very much areas when children who have issues struggle the most I have noticed.

These are times they can benefit from an educational psychology assessment not just for the ones that struggle openly but for all children maybe then the issues will be picked up and dealt with quicker, I feel this is an area where change can and should happen, an area where funds are raised and targeted, funding for more psychologist to encourage them into joining the field, a nationwide program set up to surrport schools to help the children, teachers have sometimes thirty children in their class they are not trained to pick up on all the different conditions or how to affectively help so many students are excluded from mainstream as they don’t have the know how or funds to make the change, or the inclination to change the way they think about what a child should be able to do in society today, we are bringing in more emotional intelligence into the work place, schools and life.

This is how we advance our children the most in developing self-awareness self-respect and self determination to give them a love of learning and a sense of achievement again.

We have to show them that if they want something with a passion it is only them that can do it they have to work hard themselves to achieve this, that way it brings value to what they have an have accomplished by themselves.

There is also another topic which has many changes that need to be made, the issue of bulling this is something all schools need to work harder on, their written policies on this are right but many don`t follow their own policies in this area, and it is easier to say its kids being kids and refuse to hear a child, then dealing with it, it is easier to say a child with communication problems misunderstood then accept to that particular child it is bulling, why excluded a child that acts mean when you can exclude a child and ignore a child that feels threatened by this behaviour.

Are we not then allowing children to behave in a certain way that’s unpleasant for others so what is this child without issues is allowed to go through there school life without their behaviour being addressed properly are we not doing these children a disservice as well, are we may be missing out on why these children think it`s ok to behave unkindly to another.

Everyone has a voice everyone is trying to highlight lack of funding in their set areas imaging if instead of individual voices you communicated and worked together the change to each of our own countries and for future generations to come we all make a step to collectively affect a change for a more inclusive and accepting world where no colour, ability, disability, religion or gender it is for our own advancement and also our families and the world’s best interest to move forward in this new twenty first century world.

There is another thing many of  those with autism suffer with as well, that is selective eating and it is on its own a major issue for those that suffer and their families, getting people to understand this and in fact take it seriously is something of a challenge and something that needs a surrport system all of its own.

My son has this issue it started when he was to years old, after a terrible stomach bug and has continued to affect him to this day ,we have seen many experts and not one has been able to give advice other than put it on his plate he will eat eventually, we have seen dieticians who  wanted blood test done to check his iron levels but we can’t get blood test done because he won’t let needles near him, he is will to have needles if they give him gas and air first but we can`t get anyone willing to do this, it is a fear we are trying hard  to work through with him. His eating impacts his health and his strength his has tummy issues that don’t get better because of his diet and what it lacks, we hear a lot let him go hunger he will eat eventually, but that ended up in him refusing to eat and drink at all and chronic constipation and incontinence issues which meant more medication he refused to take ,sometimes it is just a cycle that we can`t seem to break through, and no one knows how to help with it some of it is sensory and some is a fear of even trying ,low and be told if any of his foods touch on a plate it can cause major meltdowns which is hard for all in the house to deal with, for him for his sister and for us as parents it is pinnacle to him thriving and gaining strength it could even  help with many of his issues if we could help him be able to eat. But where we just can`t seem to find the right surrport still after 10 years of going through this with him.

It affects our whole life and also our ability to go out and share a meal or even going to families to share a meal because you get the disapproving looks and the my kids eat everything comments sometimes I want to say well that’s great for your kids I am proud but not helpful for my son   

This selective eating not only affects the food he eats but also drinks and medicine.

Why is this an under estimated part of the autism spectrum if you ask all people on there about this and help they personally have received or if their parents got surrport for this I would think on a whole they would say they just got many criticism about this and judgement of their parenting skills.

We have tried everything we have made improvement as to fruit but that’s it really a diet based mainly on yellow foods which I assume to him is his safe colour, but a diet whole carbohydrates is just not healthy he needs protein and calcium and iron , we don’t know what he is lacking because hey no blood tests. We supplement with multivitamin with added iron but it was only ever meant to be a temporary thing that is still going on years later.

Well I still remain positive it will change one day, but the longer it is there the longer it will take to overcome it, I am not a professional I am just a mum that is fighting with all she has to get help for some of the other things happening aside from the actual autism, to give my son the best chance of leading a happy and healthy life.

There are many other things as well little issues or big issues to us that makes life just that little bit harder just that little bit tougher but we still try hard to smile through it all.

There are other questions still I don`t know the answer to but maybe one day will all fit together to put the entire jigsaw back together again.

The benign hyper mobility yes it is inherited that we have been told on many occasions what is confusing is that sometimes it is not so benign it affects their joints and the handwriting and there energy . Is it the cause of their bowel issues does it make them slower at being able to digest there food is this why they avoid some food groups altogether.

The night time twitching limbs is this why they have a disturbed sleep as some times my son has dreams he is falling off a cliff strange I know but it all ways seem to be 100ft.

The syncope a drop in blood pressure normally comes after a migraine and bad balance causes tingles in limbs.

Or is the migraine a result of the extra cerebral spinal fluid in the occipital area of my sons brain.

The fact that I have lost a child with an occipital encephelocele and heart defects and my to children have these terrible palpitations how can it be unrelated.

Maybe I will never know the answers to all but it doesn`t stop the mind from thinking them and looking this is maybe why medical mystery’s intrigue me because the key to puzzle is yet to be known or discovered if it ever can.

But for now I try to put it to the back of my mind and just take a day at a time and concentrate on the stuff I have the ability to change myself and help them change the things they can.

This is my own personal opinion on our very own struggles that could be made a lot easier with a little more of the correct sort of surrport.

Many thanks

Love and hugs

Faye xx