It is 10 years now since I met Janet O’Keefe.  Little did I know at that time what an important impact she would have on my family!

This could be a very long story, but to cut it extremely short:  Adam is the younger of our 2 sons and (after a bit of a battle with what appeared to be everyone at that time) was diagnosed with autism (at the more severe end of the scale) at the tender age of 22 months!

Following lots of appointments with various different professionals (with all the associated negativity), we were getting no further forward with making sense of anything.  Adam was ‘spiralling’ out of control and it seemed as though there was absolutely nothing that we could do!

In sheer desperation, I found Janet’s number in an NAS publication and made contact to see if there was any way she could help us.

Our initial appointment (with my husband, eldest son Sean, Adam and myself), consisted of an interview by Janet in her beautiful home:  Thereafter, Adam and I visited weekly (in the spare bedroom) over quite a substantial period of time.

Janet devised a ‘list’ of 10 or so items / activities each week that we were to work on.  Obviously initially there were only one or two things that were appropriate. Using these ‘positives’ we worked forwards with a programme that once we had completed a few weeks, Adam and I could successfully complete most of the items on an A4 sheet.  With all this successful we became much more motivated than we had been in the months previous.

As the weeks went on; Janet put us in touch with all sorts of other Therapists that could support us:

Adam had problems with sleep (he basically never slept through the night, and once up would ‘play’).  We were introduced to Fioretta, who devised a tape for Adam to listen to before he went to bed.  This worked wonders!  He wore headphones (we never thought he would); and sat spellbound with this ‘music’ for about an hour before he went to bed.  This was reviewed and still uses a very similar therapy to this day.

Adam has always been very ‘hyper’ and ‘bouncy’!  Although there was nothing really wrong with this, there are obviously times when this isn’t always appropriate.  Time to call in Julie.  Julie is a nutritionalist, and recognised that there were obviously certain foods that would spark off this unconventional behaviour.  With lots of support and guidance, we adopted a casein and gluten free diet.  Although we relaxed this just a couple of years ago, we still recognise certain rules, especially when out and about and on Holidays.

Once a ‘Special Needs’ child goes to school; they need to have a Statement (or at least have one in progress).  Without Janet’s guidance (with everything else, I didn’t have the first clue); and introduction to Melinda, a Special Educational Needs Solicitor; Adam most certainly wouldn’t have benefited from all the support, love and specialised care of the school he attends today!

I have kept a ‘diary’ since I started working with Janet.  Although it makes me cry buckets, it is sometimes worth an hour or so to look them out and remind myself of what we have as a family coped with and have successfully come through.  More importantly take time to celebrate all the achievements that Adam makes every day, no matter how small they may appear to others.  For us now everything is extremely special, and time spent together as a family is important.

There were times when we were just so wrapped up in the ‘negatives’ that it was impossible to see anything positive.  It was extremely upsetting that Adam did not talk, wouldn’t want to associate with anyone, wrapped himself in his own little world and wouldn’t let anyone in!  Janet would always be there to support and was always insistent that this was just a ‘phase’ that he was going through.  I most certainly didn’t believe her at the time, but we are now on a totally different chapter.  His speech is not as good as it could be; but it gets him what he needs!  He is always curious about new people; and always has a cuddle when he has missed us!

This is just a very brief synopsis of all the hard work that has gone on over the past ten years.  Every chapter brings in new challenges, with new goal posts that are ever needing to be moved.

We never say never these days.  As a family we spend many a happy hour together.  Adam has a love of socialising and loves a Restaurant and good food.  He loves ‘days out’ and is always beautifully behaved. 

We even go abroad for our Holidays these days!

Thanks Janet!  I don’t even begin to contemplate what life would’ve been like for our family had you not been involved…

Amanda's Story 

Our second child, Oliver, was born in September 1997, a beautiful, contented baby and a welcome addition to our family.  As the months rolled by we became unsure that he was able to hear properly but felt reassured that he passed both his 8 and 15 month hearing tests.  I recall the health visitor saying that she was certain that Oliver could hear but that he wouldn't play the 'listening game' either way she felt sure that a hearing problem he may have would not affect his speech.  How shocked we were to find out that he was profoundly deaf, after the shock came the sense of grief as we wondered what would become of him.  Shortly after I enrolled on a British Sign Language course and BSL became Oliver's only method of communication until he was four and a half years old.  We decided that Oliver should have a cochlear implant and he was implanted on October 8th 2001 he also received follow up care and speech and language therapy from the implant centre.  This rehabilitation period only lasted just over a year and we were then left with a fight to get speech and language therapy for Oliver.

Children's Sensory Support told us that Deaf children were unable to receive this therapy as there was no-one trained to work with deaf children.  Whilst trying to get help from the local authority, we decided that we needed to find a speech and language therapist immediately.  We took Oliver to Wordswell for assessment with Janet in May 2003 and started paying for private therapy.  Not only did Oliver receive the help he desperately needed but I became more knowledgeable and confident to take on the LEA to challenge the wording of the statement.  We prepared a water tight case, Janet wrote a comprehensive report and this was accompanied by reports by the implant team and another speech and language therapist.  We got to 4 days before the SEN tribunal and the LEA gave in and agreed to fund Oliver's therapy to be delivered by Janet but fully funded.  Janet had given us facts, figures and warned us of the loopholes, the knowledge she armed us with was definitely a vital key to our success.  To date Oliver still receives support from Janet and next year’s Statement has been approved without change to the provision.  Oliver's speech is now intelligible and he has gained confidence to use his voice even with strangers.  His chosen method of communication is now oral; however he does still rely on sign language for receptive clarification.  We are so pleased that we chose to engage the services of Wordswell, Janet's input has helped change Oliver's life and the future is now bright.
Oliver is a sporty young man, he loves to play football and he swims for the District Swimming Club and also competes with the British Deaf Swimming Squad.  He is the holder of the British Deaf Swimming Record in all four strokes at 50 metres.  He also loves cycling and often cycles about 20 miles on a Sunday morning with his dad.  He hopes to complete his first triathlon very soon.
 

Stephen has Asperger Syndrome and Janet’s involvement with Stephen was in providing social skills group therapy in primary school and in the holidays over a period of about 5 years.  Stephen’s parents also attended a “Stop, Think, Do” parents group.    It is our belief that this combination of integrated and consistent therapy, with parents, therapists and education staff working together, gets the best results.
Stephen’s parents told us:  

“Since your involvement Stephen has just gone from strength to strength.  He finished School in the summer with three 'A' passes at English, French and History at 'A' level. He represented the local Rotary Club at the Euroscola Conference in Strasbourg last year and came back to give a Powerpoint presentation at a Rotary Club dinner. He won the Student of the Year award in Year 12 and in his last year won the school's prize for outstanding achievement and originality.  He has grown into a remarkable young man of whom we are very proud. He has established a great group of friends from school with whom he keeps in touch on MSN and Facebook. He has now gone to University to study French and History and so far seems to have settled into the social life. We are not sure if he is doing any work!!”