#caring #awareness #disabilities #hiddendisability #invisibledisability #mentalhealth #friendshipandsupport
Hi everyone how you doing today slightly different blog today.
I always wanted to create a safe page for families who go through things that not all of can ever understand. It’s why I wrote the book just to try and bring some sunshine and laughter back to all my family what ever they go through in life. Slot of the time people fear what is different they laugh make jokes. Bully and exclude not just in one community or country but kind of a world wide thing. But maybe by sharing stories and journeys from your perspective and that of your families and friends we can begin to make a tiny dent in educating others every person in the world has different views points different ways of looking at based on how they are affected. These I probably just a few perspectives of things that are important to me as a mother to raise awareness for.
I hope our future world is much more inclusive caring,supportive and understanding. With knowledge comes understanding with understanding their becomes less fear. With less fear it becomes more supportive let’s start a new day with a open heart and we can change things for the better. For all people’s future. Especially our babies.
Here is a song that is just so great that you know their is always someone you can message if you need a friend.
To be honest my view points really change the more I talk to other families and learn more from adults too who are autistic ♥️ and how much my understanding has grown since diagnosis for my children.
The most misunderstood syndrome I think and impacts especially my Niki the most, the reason for many exclusions and judgments. it isn’t just one thing like it’s portrayed in the media. its often painful tics it as well as vocal it isn’t always vocal , it sometimes all of the above. having autism depression and anxiety disorder as well as Hyper mobility issues a lot the same time is why my children’s needs are classed as complex. add in PDA and sometimes it was such a challenging experience to get the diagnosis right. it’s constant tests its sitting and telling the symptoms and how your kids are affected, its being pushed from one doctor to the next leaving you more over whelmed and confused every time you leave the room. different doctors very different opinions. the challenges of having it added to your kids EHCP. some times its endless. the challenges families face.
It can cause huge meltdowns , or such relief it can change so many time in even minutes that’s not an exaggeration it’s simple a fact.
Both My Niki and Jake have sensory issues. It’s with food , clothes, noise and taste even the feel of things we have brought so many different sensory products that have proved beneficial to them over the years . We normally try to get them either in their favorite colour’s or ones that incorporate their special interests.
We spent a lot of time focusing on meeting their sensory needs because this had an impact on their behavior and their ability to learn it still causes issues but they are receiving support and are better able to communicate what they need and when they need a break and quite time.
The need for lots of physical input, physical activity helps a lot , taking movement breaks to help ease the feelings in your legs having forgot toys so you can chanel some that energy and focus. people often think a child is just misbehaving but they truly need that physical stimulus or it causes them physical pain how others react at this time makes all the difference , alot of the time kids here.Will you sit still , just focus , leave the room if you can’t do it. Instead of I see your stuggling how about we go outside and do something physical and comeback when you feel you can work again.
Sometime tiny adjustments can minimise exclatating behaviours that didn’t have to get that far. Kids can get angry if they are having pains and feel know one understands. A lot of times it can lead to exclusions. Because they get to the point where they can’t explain what they feel. I mean unless you have it you never know what it really feels like for that person.
Deaf Loss of hearing
Sometimes our Niki suffers with hearing loss hers thankfully is only a temporary thing due to blocked ears and the treatment helps but it has affected her a lot over the years. Thier was a few weeks both her ears became completely blocked and we had to wait a week for an appointmentb get the nurse to do them as we tried the usual home treatments and it hadn’t worked she was so distressed by it. Niki has been teaching herself to lip read won’t help much in present times due to face masks but she also has been teaching herself both English and American sign language. Not only to help herself when her ears are bad but to be able to communicate with her friends who are deaf. I do feel that maybe it can be encorporated in to teaches learning, plus parents and siblings the more people that know even some basic signs the more enclusive we can be for people who are deaf.
Don’t take chances with your health, sometimes we fight more things we don’t want to give up, and ignore things we really should fight to change. I have been that way previously and it almost came at a great cost to my health.
Thankfully though now I am the healthiest I have ever been a even I am starting to notice the the physical changes.
This is pretty new diagnosis we are now managing , but the treatment is really helping. So thankful for that and maybe we caught it early enough so that it won’t cause future issues with fertility.
Asthma and Copd these things are very important to get well informed about especially now we are in this global pandemic and the risk to those suffering and the implications of treatment they may be able to receive at this time
Mental health is so important to me , I write about it a lot about depression , anxiety, self harm, body image eating disorders , disassociation. Schizophrenia. So many different things that impact mental health, still a subject that has a lot of stigma attached . Even though everyone is talking and sharing it from their own perspective and it still causes cruelty and harsh unkind words, judgement.
The reality is they exist their is no way people are going to let it be that dirty little secret families are supposed to hide and not talk about the worlds a big place and every country has the ability to educate it’s people make these things something we stand up for together.
TIME FOR CHANGE !!!
Prader Willi syndrome
PWS you all know I work with Hayley if you have been following this blog this is what she has been diagnosed with but not until she was around twenty five, at the same time her seizures and epilepsy started. I think something take way to much time to diagnose and without a much faster and better system with all agencies truly working together with each others and families it is causing so many more issues with peoples mental well being .
They are the most beautiful smart loving kids ever and adults, not always easy but they make friends with everyone, they love so unconditionally they really bring joy to your world.
The last thing for todays blog is invisible disabilities. they are only invisible if people remain silent we all have the power to find a voice, to build a future that can help many you never know when you or a family member will be affected and they will never be able to
There are so many different invisible illnesses , rare illness and disabilities the list is endless.
If any one would like to share or add to this from your own perspective if you don’t already do that feel free to message. collectively we can change so much.
If you or any one is affected by any of the things raised today in this blog please make sure you talk to your doctors or local health service or mental health teams. If your struggling just find someone you trust to go with you if your to anxious to do it alone. make sure you get proper medical help. not everything we read online is truth and sometimes can be misleading and dangerous.
This is my blog for today.
Sending you so much care and love Faye xxx