Happy To Start School After All the Tumoil.

I'm so happy he started his school again after the surgery. But we have gone through a lot.

School really wanted Pranav's safe return which I totally appreciate. But His surgery is not something unplanned. Moreover about Pranav's surgery it was discussed two months prior to his Surgery with the concerned person.The response I received was "I don't know anything about this surgery. In Fact I'm hearing about it for the first time". That day I tried to explain that many children from the UK have been getting this surgery to improve the level of their independence. I was not reciprocated the interest to understand about this surgery. Not even a single attempt to understand how it is life changing for one of their school pupils.

Fast Forward: 6 weeks after our return, when I contacted school about his return is I was told,   " we need to assess Pranav until then we can't give you any start date for Pranav".

Oh Wow.. I didn't expect to hear this, I have been communicating that Pranav Will go for surgery, But the concerned dept has failed to understand and never attempted to understand. Due to which Pranav has to wait for his assessments for another  3 weeks. If the concerned dept would have understood earlier, we could have arranged his assessments by the time of his return.

So as a parent, obviously we are frustrated and depressed with no start date for his school having the Health Professionals( who worked closely with Pranav

) discharge summary which says he is SAFE TO RETURN to school.

SEN team  is to help and support families and children with special needs. They are not from school.

We have contacted SEN team seeking help/support. What all I was told is "the SEN member contacted various health professionals and was told Pranav is highly at risk to attend school"..

So without assessing they say Pranav is at high risk.(this is highly valuable for SEN and school) And the professionals who worked closely with Pranav confirmed he is safe to return to school which is of no value at all.

Without Assessment Pranav is at HIGH RISK -- confirmed by the health professional, this was communicated to us by SEN member.  It really shook me. The lack of knowledge of someone is confusing the whole system here. As a parent who look after my son 24 hours I can see my boy happily playing around, and someone confirmed he is at HIGH RISK.. totally unacceptable.

I have had lots of questions throughout

• Why didn't you arrange when we were away for 6 weeks, although I have been proactive in communicating. (It's because the concerned member from school , didn't attempt to understand when I communicated).
• A question for health professionals who said Pranav is at high risk?  How come a health professional can say Pranav is at high risk without assessment or without any physical examination(No answer for me till today) that's because they have no evidence.
• A question for SEN who said Pranav has to attend 3 physio sessions in a week from the NHS hence it is difficult for him to attend school? -- Oh that's strange I want to see in reality NHS giving 3 Physio sessions per week.
• Will there be any penalty fee at all? I have received penalty twice from school and council although I have submitted authorised letter for his physio treatment. Before our trip/travel I had to take time out of the strenuous schedule to sort this out. I wonder now if there is any penalty fee at all to the concerned?

If an individual exclude my son I wouldn't fight back instead I create awareness. Because we can't change an individual's perception. We can only present facts with lot of awareness.

But if a system/an individual who is in place for coordinating special needs children or families, exclude my son due to the lack of knowledge I would definitely fight back.

So what happened In the assessment?

Assessment happened with two health professionals OT and PT from NHS, who confirmed Pranav is definitely capable of doing transfers and safe to return to school. And they have confirmed, as I have demonstrated the transfers and comparing with his previous care plan. And the physiotherapist who came to assess pranav is the new one as the old one was moved to another department. So a new physiotherapist has confirmed( who never worked with Pranav before surgery or till today) and hence school and SEN team happy to take back Pranav.

So the overall assessment I strongly say " without my (mum's) demonstration I don't know what the health professionals would have said. In my demonstration Pranav could do sit to stand and turn around to be able to seated on the other chair.. And  after his return to school, school has asked me to be there whenever they need help/support for Pranav for which I'm more than happy to come and help. This is what I have been trying to tell them I can come and help. I have helped in the past. But my demonstration of transfers had no value until the new physiotherapist confirmed(who never worked with Pranav before)  which has got value today when he needs to return to school. I understand the value health professionals in my life I don't know where I would go without health professionals help to support my son. But I rely on health professionals who closely work with Pranav.

Being my son's carer for 24 hours, no one knows my child better than me. Not even health professionals who sees him rarely.  All mums must strongly believe in our care, in our instincts, in your upbringing. No one can say what your child can do or what he can't not even the health professionals.

Some people ask me why don't you go back to work as Pranav is going to school?..Well I'm already working 24*7 for which I'm very proud of.

Occupational Therapy/ Adaptations/ Paediatric Specialist Aids

Todays post i write about the role of an occupational therapist (OT) and Home Adaptations.
And examples of Specialist Aids for a child with special abilities.

How Specialist aids helps the children with special abilities, to have a quality of life?

What is home adaptations? How does it help  the carer/parents as wells as the child with less mobility to self care independently.

Occupational Therapy:

OT  helps individuals who have difficulties with everyday tasks, such as preparing a meal, feeding themselves, taking a bath, going up stairs.

The occupational therapist in children with less mobility, plays an important role in assessing the following areas.

• Motor skills, fine motor skills including handwriting, visual perceptual skills, sensory skills and sensory processing.
• Facilitating independence in self care eg. Dressing, washing and mealtimes 
• Advice on adapted/specialist toys and play 
• Consultation and advice on minor modifications and building adaptations at home and school
• Assessment for specialist equipment.

Specialist Aids for Children:

• Paediatric Cutlery it really helps Pranav to eat by himself.  It is must for chidlren having difficulty in fine motor skills, as it improves their confidence and self esteem.
  
• Paediatric Toilet Aids: The comfortable and safe toilet seat is very much needed for children with disabilities, as it is a matter of dignity and it will help in preventing child's self esteem.
• Paediatric bathing Aids: makes bathing, showering and using the bathroom more comfortable for the child as well as for the parent. Bathing should be an enjoyable experience for every child. Toilet/bath adaptations plays a crucial role in making the carer/parent job easier by protecting their backs and also helps a child with less mobility in achieving the little independence they need in self care.       
  
                                                                                       For some reasons we couldn't adapt our flat for Pranav's needs, but we hope to make it possible in near future.  No mother should feel that giving bath to a 6 year old is a battle, as without adaptations the lifting is unavoidable with children having less mobility. It really makes my back sore all the time. To protect my back and to give little independence to Pranav, we really hope to see a reality with adaptations in near future.
• Writing Aids:  Pranav is well trained in writing although he has difficulty using his hands and 
  
   fingers. But to catch up the pace at school's learning Pranav is also trained in typing to rec -ord his work in the laptop.  Sloped/tilted board is lot of help for pranav to record his school learning without tiring too much. Pranav gets tired too quickly with his additional needs, but the specialist aids helps him in making his job bit easier.
• Paediatric Mobility Aids: There are various types of mobility aids for various ages from toddler to young. Examples: Toddler wheel chairs, trikes for children with less mobility. Mostly mobility aids are very expensive. They are not provided by NHS. There are few charities that helps, but we need to wait several months to get approval.
  

Never give up. There is a lot of advise we can get from occupational therapy services and a bit of research on the internet, will help to improve the child's quality of life and to help them  to have an independent life.

WORLD CEREBRAL PALSY DAY 06-oct-2018

Today 06-oct-2018, is world cerebral palsy day.I'm glad there is one day for cerebral pay awareness.  There is a lot to share about raising one with cerebral palsy.  There will be mixed emotions,  lots of tears, overwhelming joy, big and small triumphs to celebrate and we learn to cope up with multiple demands and we learn to forgive people who is not even sorry for their actions.As a parent we believe nothing is more important than a child's comfort, happiness and independence.

I often talk about our blessings and how proud we are as a parents to raise a super hero. But there is lot of struggle and so many fears about the child's future.

I'm fully confident about his strength and determination. And he is the most charming boy ever. But the fear is all about acceptance, will he ever be accepted in secondary school by all his friends?  Will he be able to achieve what he wants to do by overcoming societical pressures and fears? I have seen people loving my child unconditionally irrespective of the color,origin and background. At the same time, I have seen people avoiding him, although being same in every aspect. So life is unpredictable. I can't change the people or scoiety but I can only create awareness while preparing my boy for the future battles.

The question arises when I think about avoidance. What makes it different to avoid? Yes, he uses wheel chair but inside he is just  like any other child. He has same emotions, same feelings Moreover,his life demands to accept what he can't do and to cherish what he can do at this little age. As a mother, for me he is just a kid I don't see any differences interms of his learnings, but yes I do come across many differences(even though I don't compare) and it breaks my heart to see, while his classmates attends sports clubs after school, we try to catch up appointments for eye checkups and regular check ups and therapies. Sometimes my child asks me will I be able to walk? Although it's heart breaking I'm very honest with him. I tell him the realistic expectations that he will use crutches and much more better independence he will getbafter surgery, only with hardwork. It's hard to explain 6 year old the realistic facts with so much positivity.

I fight with therapists for under estimating his potential and failing to providing suitable equipment for his needs.He proved them wrong many times. The only  thing is to have a proper guidance in therapies is essential. Life is a constant battle. Everything is not spontaneous. Every thing should be pre palnned and well organised. Lots of planning requires to plan his weekends with therapies and outings/nature walks.  Even dropping him in school is also an adventure, as transitions in and out of the car is getting difficult.  Folding/unfolding whechair and placing in and out of the car is even more challenging. My back is sore all the time, which is when I feel I'm doing something extraordinary. Otherwise all other skills teaching him is such a joy.


Growth Spurts: Cerebral Palsy is not progressive, but it really tighten the child muscle If we don't give them enough therapy. Normally the muscles being stretched through out the day during child's activity and play time. In children with cerebral palsy, decreased control of muscles and increased muscle stiffness prevent muscles from moving through their full range of motion as easily or as often as other children.  Children with cerebral palsy needs stretches and therapy to equate the bone growth with muscles.



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WHY IS IT VERY IMPORTANT TO OPT FOR SDR SURGERY?

Why is it important to go for highly expensive surgery for Pranav?
At the moment, Pranav can walk using the walker(PACER) for only short distances. It gives him the gait training but as he grows his muscles getting stiff and painful. It would be hard for him to continue the physical therapy what we doing currently. As he grows it will be more painful.
     If he discontinued the physical therapy there are greater chances for him to get his hips dislocated which leads to further surgeries to correct it. Through SDR, we can avoid many more orthopedic related surgeries for him. We have seen the stories of CP adults who couldn’t have SDR but had to go for 10-12 orthopedic surgeries in their life. It was really painful for us to see their stories and couldn't imagine Pranav with pain in his whole life. As we have the possibility and we are fortunate enough to find the DR who is performing this surgery form past 25 years. All their stories inspired us to step ahead.

EVERYTHING YOU NEED TO KNOW ABOUT SDR and FUNDRAISING

What is SDR(Selective Dorsal Rhizotomy)? 
SDR is a spinal surgery which makes the pupil's legs spastic free(or remove the tightness). This will help to build the strength by doing intense physiotherapy. SDR is not a cure for cerebral palsy, but t it changes lives and gives another level of independence to the candidate.

CerebralPalsy - How it affects Me(Pranav)?

Cerebral Palsy is very Unique. Its different for each individual. Although it is unique, in general thereare few things that are common and understandable by someone who has CP or by someone who looks after someone with CP.

Pranav is verbal and very expressive. It's really important to create awareness about CP, how he feels and what he goes through and how he challenges himself to achieve his dreams. I write here in his own words.


Braces/Splints: I wear my Splints all day. It helps me to do assisting standing up and assisted walking. It also helps my leg bones to grow in a right direction.

Sitting Posture: Its hard for me to sit-up nice and straight as my core is not strong enough. I try to make my core strong by doing physio. Sometimes it is very hard to continue my physiotherapy after coming back from school, as I get tired. Although I keep hearing how important it is, it is so hard to push myself beyond my strength. 

Night Battles: My parents put me in sleep system or in gaiters to keep my legs straight during night times. This will help my hip bones to grow in the right direction. This will avoid any hip dislocations. And at night the sleep system help my legs to keep them straight and to have a bit of stretch to my hamstrings.

Loud Noise: Loud Noise really hurts my ears and I don't feel comfortable at all. It makes me sick. I avoided many parties most of the time with the fear that I get sick. But my Mom and Dad keep telling me that not all parties make me sick. They just help me to come out of my bad mind. I had recently attended my friends birthday parties. So I believe I overcome the fear of attending parties. I kicked the butt of my bad mind by saying 'can, can I can attend parties'. I use ear defenders to avoid loud noises.

Eye Sight (Amblyopia): My vision is not clear for far distances. And also I struggle to read my books as my left eye sight is Weaker that the right eyesight. This condition is known as Amblyopia. But Mom and my teachers say I am really doing good with my reading levels. I believe I keep challenging my vision and reading ability.

VoiceControl: My condition CP control the muscles all over my body. Sometimes I lose the control of my voice esp when I am excited. But sometimes me being cheeky chose to scream just like any other child.

I'm Just a MOM..Stays At Home

I'm really glad to write a  few lines about a mum who attends special needs of her own children and how it affects their life and how wise she acts and how quick she learns on the go.