You will never know just how hard bringing up a child with disabilities is untill you have experienced it. It is both physically and mentally draining.
Callum is surrounded by family and friends that love him more than words can describe, however when raising a disabled child love is just not enough.
Callum is 10 years old diagnosed with Autism, severe learning difficulties, visual inatention, pika and a bowel disorder. He has no method of communication, hes non verbal, cant use sign lanuage or mackaton and he cant use picture cards. He has no awareness of danger, he needs all aspects of care needs met by another person. Callum always needs to be supervised as he eats objects such as soap, pencils and anything that he can get his hands on. Callum will always need one to one 24 hour care.
Callum is a beautiful boy who is extremely energetic. He sleeps very little and can have very unpredictable behaviours laughing one minute then screaming with anger the next, hugging you one moment then pinching, biting, scratching and punching the next. As Callum has no communication he gets very frustrated and it is a guessing game to what he wants or needs.
As Callums parents our dream is for Callum to be as happy and independant as possible with the oppurtunites to progress to his maximum ability in a safe environment.
Every day life, for Callum and the whole family including his two younger siblings is a struggle.
We have a chain on our fridge to prevent him from eating raw meat and frozen food, toilet roll is locked away as he tries to eat it, he tries to eat out of the kitchen bin so we no longer have one, we have to super glue objects such as lamps and ornaments to the surfaces to stop him throwing them, there is a lock on the outside of my 7 year old daughters bedroom door to prevent him going in and breaking all her belongings. This is very sad to think that a little girl has to worry about her pictures being chewed up by her 10 year old brother, her dolls being broken and chewed, her clothes being chewed and thrown around her room. She cant leave her bedroom for a second without callum going in and ruining everything. So at 7 years old my daughter has to remember to always lock her door. My 3 year old has to share a bedroom with me as its unsafe to put him in with callum. I feel extremly sad for my daughter and my 3 year old son who can't enjoy a child like enviroment in their own home. They can't have friends over, sleep overs due to callums behaviour and needs. We have stair gates everywhere to ensure Callums safety to restrict access from certain rooms. for example he went upstairs started running the bath, jumped in and it was boiling water. It is not a relaxed home environment as Callum continuously has to be monitored.
Another example:Most families would not think twice about putting washing on radiators to dry however we cant even do that as callum will pull it off and chew the items so as you can imagine our life is very different to the average family home.
It doesnt feel like a family home it feels like a prison.
Every night Callum wakes the whole house by screaming, bouncing up and down, throwing objects around the bedroom so it is constant care that needs providing to callum even throughout the night. This indicates that callum needs his own space that is safe where he is safe to wonder.
To ensure all his needs are met in a safe envrironment adaptations need to be made to our home we contacted our local authority to try and get help however the funds arent there so we have had to result in trying to raise the funds ourselves and i beg the public to understand how difficult our situation is and try and help us if you can no matter how small the donation may be it would be greatfully appreciated.
In order for Callum to live comfortably in his own home he requires his own bedroom, a room where carers can stay whilst looking after Callum and a sensory room as this is a calming, stimulating, safe room that Callum benefits from. He doesnt play with toys and has no interests other than the sensory room surroundings.
Callum would benefit from various therapies that are not currently being provided such as speech therapy, physio therapy, music therapy and sensory therapy. He had all these at one point but with funding cuts they were all withdrawn causing regression in Callums learning.
Callum will require specialist carers to look after him especially as hes getting older, bigger and stronger. So in order to give Callum the best possible chance of independance in life i am trying to raise funds to put all these measures in place and to keep them consistant without the worry of a therapy being withdrawn due to funding cuts.
I thankyou for reading mine and my Callums story,
- nina boyle
- Amelia Carter
- Vicky Halpin
- Amelia Carter
- Denise Evans
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