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Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

 

The Milne's Story
Paula Milne
 

 

Let’s go right back to the beginning for my little family.  I shall start off by introducing ourselves. I am Paula (hurtling towards being 50), Husband is Grant (51years old) and our special son Ross who is very nearly 20.

 

Grant and I got married back in September 1991 and after a few months, after I had been ill, decided we were settled enough to think about starting a family, easy peasy, or so we thought! 4 years later and 3 miscarriages later I found out I was pregnant again, wasn’t the easiest or enjoyable pregnancy, but that was due to being worried that things would go wrong again, but I got past the 7 weeks, 9 weeks and 16 weeks when I lost the other pregnancies, and as each week passed we became more and more excited.  Ross was due on the 5th September but obviously decided he was just fine where he was and did not make an appearance until the 21st September 1995.  It was a hard and difficult birth but our beautiful son was finally here so everything else paled into insignificance. 

 

Ross can only be described as a “funny” baby, he cried a lot and fed a lot but we never thought much about it to be honest.  We then started seeing the Health Visitor regularly and Ross was not hitting his milestones, again we did not think too much about it as we were told due to his birth where he was starved of oxygen that could be the reason he was a tad slow.  He again did not hit his 18month milestone, 2 year milestone; he was then seen again at 2 1/5 years of age as he had just started walking then, but no speech.  At 3 he was asked to be seen by a 2nd tier assessor who saw Ross quite a few times and then asked us to attend an Assessment Unit in Aberdeen called Raeden for a week.

During the first part of 2013, Grant & I started looking a supported work placement places for Ross, ready for him leaving school that summer.  It was a hard and difficult process, as there was not much about in Aberdeen, but just by chance through a friend of a friend we heard of Foxlane Garden Centre, so gave them a phone and arranged a visit.  Ross really liked the garden centre and so did Grant and myself, but the final decision was Ross’s as to where he wanted to go after school.  He chose Foxlane and they chose him, he went for a couple of trial sessions and got on really well, then was offered a placement in April 2013.  We as a family were really chuffed as all of you who have gone through the transition process will understand how frustrating Social Work and the whole process can be.  We had a useless SW who in the end I had to ask to leave my home.  During this time of transition I lost my dad to Cancer and he was a HUGE part of Ross’s life, the SW on the day of my dad’s funeral phoned and said he had forgotten to put in the Self Directed Support Paperwork, well you can imagine what my husband said to him.  However I digress, Ross has now been at Foxlane for 2 years, Monday-Friday, 8-4 and he has grown as a person, become more confident and willing to try certain things.

Ross still has a high level of anxiety with new things/places but we get by as a family using the picture sequencing technique to try and alleviate his worries.

 

 

We did that and towards the end of the week we were sent to the Genetics Department at Royal Aberdeen Children’s Hospital where they took bloods from Ross and myself, at the time did not think as to why Grant was not getting bloods taken as we were too wrapped up in what was happening with Ross.  Just after Ross’s 4th birthday we were told he had Fragile X Syndrome and that would explain why I had gone through an early menopause 6 months after Ross was born as I was the carrier of the faulty gene.  I was absolutely devastated with the news (I had already 3 ½ years earlier had to come to terms with the fact we would not have any more children but had no clue at that point why….) we were handed a compliment slip at RACH with the Fragile X’s phone number on it and it was the best thing for us, I phoned Lesley and spoke for quite a while and she calmed me down.

Ross went to a mainstream school with a special needs unit within it, he was there until he was 10 when the school could no longer facilitate Ross’s needs, so Grant and I took the decision to move Ross to a stand alone special needs school where he thrived & made friends.

 

Image (Right): Ross climbing the top of Bennachie a few years ago to raise funds for the Fragile X Society

As some of you may know last November we had a really tough time with Ross and his anger/frustration, which I posted on the Fragile X Facebook Page (which is a fabulous resource too) I was really struggling with what to do for Ross as he was taking all his frustrations out on me and I was finding it difficult to cope with, however with the support of Steve & Edel Harris I decided to get in touch with my GP and get a referral to Clinical Pschycology.  We had our appointment in June (yes I know…..) and it seems that Ross’s anger and frustration was down to grief at losing 2 Granda’s and a cousin during his last 2 years of school and going through the transition process.  We have addressed this with Ross and have been working on social stories with him as he would not speak of either granddad but now is slowly mentioning their names.

 

Although life is challenging with Ross and no 2 days are the same, he still wakes at between 5-6am everday and is on the go until bathtime and 8.30pm, our life has been enriched having him and we would have our lives any other way.

 

 

 

The Milne family of 3 would like to say a BIG THANK YOU to the FRAGILE X SOCIETY for always being there when we needed it.