Dear parents, dear audience,

Thank you for waiting so long, thank you for being here, after a long and intensive day. I hope I do not disappoint you with my personal story, based on:  “Welcome to Holland” from Emiley Pearl.

I was the chair of the parent organization in the Netherlands, and now I have my own voluntary organization, with parents and a blind chair, also people with visual impairment.   I am involved in ICEVI from 2002, after Dr. Herman A. Gresnigt  and Dr. Hans Welling asked me to undertake the voluntary job, chair of parents.  If I can do it,  you can do it as well. 

The importance of cooperating. Who is somebody without the other; Everybody needs somebody, from my eyes to your heart.

As a parent of a child with visual impairment, I am very pleased to tell you all something about the experience of a parent, so you may listen to my parent story. I am a Mom of a beautiful lady. My daughter is now 25 years old and I always say: she is beautiful outside and also inside.

Laura is her name.  She is a student of management, economics and law, and she already graduated with her Bachelors. On this moment she is starting the Premaster for It and Process management, a study for 2,5 years and we hope afterwards she will have her Master’s degree.

Laura was born healthy; after vaccinations, when she was a baby, she developed rheumatics and because of that she got uveitis and that is an infection in her eyes. It cost me very many emotional moments; I had to find my own way into this other world.

I survived by trying to cooperate with the professionals in this world. This was going up and down. At this moment I am allowed to negotiate with my government, not that they offer me a magic stick but they listen to me, and try to support.

About my great and also beautiful daughter, at this moment she only can see with one eye light and dark and the other one just 0.5. She is doing reasonably well. She likes to study and to work but it costs her very much energy. She is now recovering from a burnout. She has to learn to say this is ok for today, no more, stop now!! She is doing a voluntary job, treasurer (bookkeeping) for some hours by the air force base in our village, and she likes that very much, she can fly now and then that is great is it not? They arrange special monitor for hers so she can see more, they pick her up when it’s dark, because then she cannot find her own way.

These are her lessons to learn and together with us she/ we can do it. She had very good amiable teachers and they can convince her to do what she can do and what she cannot do to keep her energy to live, not only surviving.

She likes to live on her own, she had her own house and a dog (not a guiding dog) with support from us, her mom and dad, doing the administration, some shopping etc and some help from others to clean her house.

Every country has its own culture, but I think that every parent will recognise my story I would like to share with you to reach empowerment and cooperation. Together we can reach more.

“”Most people can't imagine what it means to have a child that is disabled. To understand which emotion is involved, please, try to think about all the things that do change in your life when you enter into this other world you don't know yet.

Lots of things are changing, there are lessons to be learned, you have to build yourself on this road and you have to get information. You must now learn a language that differs from the one you originally intended. On this road you meet other people than you had planned; people you never met before. It’s actually a totally different world.

Everything is a little bit slower and differs from the life without disability. But this also makes your world bigger and more glamorous than you could ever have expected. After a while you are there: you begin to look around you and you suddenly notice that it is possible for you to live in this world. There are so many interesting things you come into contact with and can be involved in and so many interesting people you can cooperate with.

Never ever forget, you don't have to do this alone. Try to involve your family, your friends. You can talk about the problems, and you can talk about the successes you have.

There are wonderful things to share! Never suppose that “they” know, tell them!! It can be a tremendous pitfall if you don't! The pain that you feel will never, never leave you; these things will be with you for the rest of your life. It is the loss of your entire dream. But, please, don't spend the rest of your life grieving over the fact that you don't have a healthy child! Try to find people who are willing to reach out a helping hand and to cooperate with you. If you don't, you will never be free and you will never be able to open yourself up for the special and beautiful things that you will find on the way.””

Inclusion means to cooperate, to try to find out: what, why? The others (the helpers, the organisations) do things the way they have to do them.

Try to be deeply involved in this world - your world, their world; do not attack the people you find on the way, try to work together with them so that in the end you will never ever have to say: if only...

In the end you will be stronger and can be proud of yourself and your child. You enter a world you have never dreamt of. Believe in your strength as a parent; do always follow your instincts, above all do always believe in the possibilities of your child, it’s amazing.

Let us share: our knowledge our skills, and cooperate together, we as parents with the professionals and the governments.

It’s not only money, it is empathy, time and interest, that is what we achieve when we share our experience and empower the parent on behalf of the child and you as professionals will have done a great job.

When everybody cooperates and asks their colleagues from other disciplines for information it could work. But this requires time, the expertise of each other’s disciplines and sometimes brings to light gaps in communication or cooperation or even expertise. A worse problem is that only too often people assume they know all about the other colleague’s discipline and don’t ask. The parents or family of the visually impaired were affirmed to be important, yet often not (enough) consulted as sources of information about the environment.  SHARING, COOPERATION and TRUST can be the magic words.

Never forget that the client (child and/or parent) sees you as the knowledgeable expert and wants to put their trust in you and the support system. If the client feels he can trust you, he will be very motivated to follow your advice, use aids and cooperate. Keep in mind that it only works if the client totally agrees with the set goals and if different professionals give well coordinated advice; that will settle and deepen the client’s faith both in your expertise and in the system.

Let’s hope that this conference will work like a snowball; the more we talk about it, the more it can help all of us to do even better for the visually impaired child or client.

I end my short review by stating that the involvement of clients and/or parents is of utter importance. For the ICEVI worldwide this cooperation is growing; we already are cooperating with parents from USA, Malaysia, New Zealand, Israel, etc. Dr. Elke Wagner states that the partnership of professionals with parents in ICEVI should increase. Feedback from parents is useful, (free information/advice) crucial in all the processes for modifying and discussing the changes.

I have offered the Foundation Mita stimabo (www.mitastimabo.nl) to help realise this. Please pass on to me at mitastimabo@planet.nl, names, websites and e-mail addresses of parents’ organisations you know. I will then contact them. Dr. Elke Wagner and I will see what we can do to support parents who want to be involved in ICEVI. Dr. Wagner is the contact person for parent’s organisations in Germany.

Thank you for your interest and let’s do it together. It is a challenge to go for the solid participation of parents in the whole of Europe and the world.

We also have our parents organisation  IPAVI  (International Parent Assosiation Visual impaired)

You can e-mail to: 
Susan LaVenture,  USA , LaVentureS@GuildHealth.org or 
Ofek Liyladenu, Israel  ofek@ofek-liyladenu.org.il

Warm regards Angelette Akkermans 
mitastimabo@planet.nl

Met vriendelijke groet,

Angelette Akkermans

Oprichtster/ secretaris Mi ta stimabo

0031 161 230205

www.mitastimabo.nl | mitastimabo@planet.nl