Tript's Autism Journey

This is our lovely son Tript. He was born in 2019.He is our only child. We look back on the first 12 months as one of the happiest moments in our life.

However, around 14 months of age, his life completely changed. He stopped making eye contact and stop interacting with us. We tried to connect with him but he never babbled any word and never waved bye.

We wanted an early possible treatment for him. After a yearlong battle with UK health care system,we managed to get through. Recently, he diagnosed with Autistic Spectrum Disorder, Global developmental delays, significant social interaction difficulties, persistent behavioural & sensory difficulties and severe speech and language delays.

Autism is a lifelong, developmental incurable disability that affects all aspects of life. People with Autism cannot lead a normal life like a normal person. They require early intervention, support and care for rest of their life. Since we became concerned, we as parents are going through cruise stress, anxiety and depression. We do not know how we can help our child in most appropriate and effective way.

For Tript's this condition is about:

 - No ability to communicate with anyone around him including parents. He even does not respond to his name. He is non-verbal and
does not understand any form of communication.We do not know whether he will be able to speak or not. How he will able to learn and express himself at school and in the society.

- Being sensory to many known and unknown things i.e. type of cloths, food temperature, texture, taste, food type, type of floor, nature, terrains, noises, lights, weather, environment etc. His life choices are very limited. His reactions towards manythings are not like a normal child.

-He is walking on toes from 1 year and prefers bare feet and bare body. He is very sensitive to different terrains too. We live in a terraced house. Due to his physical impairment, he cannot walk pass neighbours house and stays in the pram all the time.  He also likes to hold the mum fingers when she pushes the pram, which is impossible for her and I have to be there to push the pram. He likes to stay bare body and bare feet, which is a difficult for us to get him dressed appropriately as per weather 

 - Being not able to digest his food 100%. He can only eat certain type of food and every time whatever he eats, come out as it is.  

- Not being able to take relaxed and consistent sleep. He wakes up several times in middle of night and cries for several hours. We do everything to make him relaxed, i.e. putting him on the shoulder, late night car rides, cooking food in the middle of the night.  We sleep everyday about 2-3am.

The 8 hours uninterrupted sleep is a dream for us. Due to his sensory needs, he continuously rubs mum lips; poke her teeth and gums whole night. The moment mums goes out of the bed, he wakes up and putting him back, starts a long and tiring cycle of settling him again. Mum is getting physical and mentally tired.

- Being over affectionate, He does not leave his mother alone at all and cries a lot if he does not see her around. He kisses mum every single minute. He drags her face by force to kiss her.  This makes her
very uncomfortable and stressed

- Having severe impairment of intelligence. He has no sense of dangers. He has zero understanding. Therefore, it is very difficult of us to make him understand about how to stay away from dangers. To ensure the safety and security of the child, both we ensure
that, one parent always keep an eye on the child.

- Being unable to follow simple and temporary change to his daily routine. Any change in his daily needs cause a meltdown with screaming. In addition, He also exhibits self- injurious behaviour. He slaps himself, strike head on walls, floors, pram frame and doors
or hit himself with anything within his reach. This upsets us.

- Not being able to imitate, play and share his interests with other children. He ignores children around him.

- Not being able to play appropriately with toys and fear of slides and swings.- Not being able to ask for food, water and even changing nappies. He does not know what to ask if he feels hungry, thirsty warm and cold. 

- Not being able to brush his teeth and use toilet himself. 

I never thought that, Iwould face such a horrible situation in my life. As a family, we are going through most crucial face of our life. As he growing up this condition is becoming worse and worrying us. We are living in a fear as how my son will survive when we are not around, who will feed him, who will hug him when he will cry.

He was few months old during pandemic that has worsen his situation. Children are the future of this country and children like my child are vulnerable. They have whole life to live.

He is so young an early intervention is inevitable and helpful in improving his level to an extent that he will live a good quality independent life.

There is nostraightforward treatment available for Tript. After going through extensive research and seeking advice from various medical experts, I have convincedmyself only therapies can help my child to reach to his full potential. There is no drug or invasive/non-invasive procedure involved in these therapies.

These therapies involves breaking down of simple tasks into micro tasks and practice several times throughout the day and throughout the week.

Right now, he requires Occupational Therapy, Speech and Language therapy, play therapy, sensory integration therapies and other advance therapies. He also requires special clinic tests, which are not available through NHS. These tests can help to find out the causes of his conditions. There are many successful stories where children able to recover from these conditions with the help of special tests

He is also on very special diet and supplement free from gluten, sugar, starch, grain and diary. He can only eat non-GMO (genetically modified) organic vegetables, fruits, meat and eggs that are grown in organic environment and in organic way.   

Unfortunately, there is not much government funded help or support available for therapies, tests and dietary needs for my son requires. Therefore, we have to pay from our pockets, which is beyond our capabilities.

Funding Needs:

The special tests costing
(indicative price) can vary from £140 to £1950 or even more.

These therapies includes full initial assessments which costs anything from £500 to £700 plus £300 to £400 target adjustments after three months plus £80-£90 per hour sessions + travel time which could be £40 to £80.

Organic pasture raised meats / poultry cost £10 per day, Organic Manuka honey £20 per bottle etc, supplement -£32 a bottle. £10 per week on fruit and vegetable, £10 organic eggs per week. On average, he requires £125 per week for his special needs or £6500 per annum for his dietary needs.

He requires at 30 - 35, hours per week tutoring per week in order to reach the level of normal child. We are also learning and developing our understanding to provide the education, care and support our son requires. 

This is not be possible without your help and support. The average cost of therapies he requires is £6600/ month. This is beyond normal person reach who is working and earning decent salary.

My target is £90,000.

We are fully determined to provide an opportunity to our son to develop and start enjoying the simplest things around him like other children. 

Any donations small or big will be appreciated.

The charity "Tree of Hope" will get 7.5% of all donations in relation to this appeal for general charitable purposes and to cover their operating costs.

Tree of hope is an amazing charity who is helping us to get your kind support. We not only require your financial support but also your wishes and prayers for my lovely son.  I wish every child a healthy and happy life.

Many thanks for taking time to visit my page and your support.

May god bless us the happiness we all deserve … Amen

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