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Living with children with Cerebal Palsy or Spina Bifida, advice for Parents

What Happens at AKI?

If you are given a diagnosis for your child that he will not be the same as other children, it is very upsetting. You may never have heard of either Cerebral Palsy or Spina Bifida. You may be worried for the future of your child. There is no easy way to hear that your baby or child has problems.

First you and your family may be in shock or not want to believe the doctor. You may ask “Why my child?” Or you may find that you and your family want to find out who or what is to blame for this happening to your child. Many parents travel from doctor to doctor looking for a cure or to hear that the diagnosis is mistaken.  Both the energy of travelling around and the expense of all the tests procedures, medicines and doctors fees can be quite overwhelming.

At AKi we understand this seems like a tragedy for you and you want to find out if your child can have a normal life.  But every child is beautiful and a gift to be cherished and he / she will love you unconditionally. Enjoy your baby and remember he / she have no idea there is anything “wrong”. Smiles and cuddles cost nothing and are the most valuable gift you can give back to your child.

On your first visit to AKi you will be asked lots of questions. We need to understand as much as we can about your child, your family and the problems you have.  You first visit will usually take an hour or more. You will be registered and given a patient number. This allows us to keep a record of all the therapy and progress you child makes. Then you will have a discussion with a senior member of staff who will ask you questions about what has happened to your child up until this visit.  Then a specialist Physiotherapist will do a thorough examination. He or she will work with you to make a therapy treatment plan that suits the needs of your child. They will ask you what the most difficult thing is in looking after your child. They will teach you how you can work with your child in between the sessions you have at the Centre.

If after a full examination we feel your child needs to have a special chair to sit in we will make and supply it free of charge. If they need to have a standing frame to practise standing we will make it and provide it free of charge. If your child with Spina Bifida needs to be able to move safely around the floor without damaging her /his skin or joints we will supply a mobility aid free of charge. One of the most common problems we see is a child with CP who is safe and comfortable lying on their backs is left for too long in this position.  There are a variety of aids and appliances we can use to sort out problems.

We will show you ways to carry or handle your child to make it easier for you and better for him/ her. We will help your child do exercises that allow him move more usefully. We will help your child learn how to move in the best way they can.

At AKi we can give advice on helping your child eat if they have difficulty chewing and take a long time to finish a meal.

We can suggest activities to help encourage development of the normal milestones. Often if the whole family understand why certain activities are not good for children with movement problems the whole family becomes involved in helping the child.

We believe that every step along the way of helping your child be the very best they can be it is important that everyone understands what the aims are. We can support you and your child throughout his childhood.

At AKi we have gained a lot of experience in the 9 years since we opened. We have seen thousands of children. We have learnt from specialists from Ireland and have ongoing training to build on our knowledge. We use   resources showing best practises developed and adhered to globally. This century there is new understanding of how the brain develops and works, this information  is constantly guiding how we can improve our therapy. We are committed to building on our knowledge at every opportunity.

 We have introduced many new ideas to use local resources effectively and have been recognised by International organisations as being innovative and effective in our work. If your child encounters a problem we most likely have seen at least one with a similar issue.  You are not alone we are here to help.