We probably would never have known we were a family with Fragile X Syndrome if we had not had Jack as Dan and Jared were both diagnosed with different conditions.

Jack did not sleep through the night until he was seven.

He did not walk on his own until he was five, choosing to lay on the floor instead.

He did not say his first word until he was twelve and did not say Mum until he was sixteen.

He came out of nappies at twelve.

He went to a special needs boarding school at 14 and stayed there until he was 18, he then moved into a care home in Kent.

He loves Thomas the Tank Engine, Dumbo, Beauty and the Beast and British Touring Cars but only from 1991 to 1998.

His big love in his life is not me but his teddy Sweep and he goes everywhere with him even now at 27 years old.

He used to love going on holiday, and finally is getting to like being on the beach, being by the sea and getting on a plane again because he is now living in a cottage with carers who have patience, kindness and strength to manage Jack.

He is extremely scared of sirens, any siren police, fire, ambulance, fire alarms, and  remains anxious at times when he hears one.   In 2013 on hearing a siren our family life faced a crisis and set off a chain of events.

We had gone to the South of France driving all the way with Jared and Jack, something we had been doing for a couple of years.  We had stopped off half way down overnight at a chateau and the boys were both happy.  The following day we continued our journey when just 10 miles from our destination we heard sirens on the motorway, Jack heard them too and freaked, lashing out at Jared, Jack trying to escape from the car, hitting David on the head, kicking out at me and as I tried to restrain him he then punched me in the face.  I don’t know how, but we managed to finally pass where the accident had taken place and then pulled into the next service area.  Unfortunately Jack would not get back into the car and I then had to sit Jared in the front of the car with David and I sat in the back holding onto Jack with as much force as I could.  My boy was having a complete melt down and was trying to hit me continually.

Unfortunately the situation got a whole lot worse.

We finally managed to get to the house where we were staying very late in the evening, stopping at a local shop to get some provisions and David now sitting in the back with Jack who was still lashing out.

Over the following few days Jack would not leave the house and if we tried to get him into the car he would start to become extremely anxious once again.

I thought I should try and get him home leaving David with Jared in France, I did not think I could cope trying to get him onto a plane so thought the Eurostar would be best.  I managed to persuade Jack to get in the car as I told him we were going on a train (which he has always loved) but he was so anxious it was clear I was not going to be able to manage Jack on my own as this is a man who is nearly 6ft and heavy boned so I gave this idea up.

The remainder of our holiday was spent with either myself or David staying at the house with Jack whilst one of us would take Jared out for the day so that at least he could have a holiday.  Poor Jared was so scared being around Jack, we all were and we did not know how we would all get home if we could not get Jack in the car.

We called the local doctor and explained what had happened, and our worry of not being able to get Jack back to the UK and the unpredictability of his moods and anxieties.  He prescribed a sedative and we had to start giving it to him immediately in the hope that he would become calmer and settle by the time we had to leave to drive all the way back to the UK.

He didn’t settle……

We packed up early to drive back and Jack would not come out of his bedroom as he clearly now had a fear of the car.  David had to physically drag Jack across the floor with Jack holding onto anything that would stop him moving.  Finally we managed to get Jack into the car and then sadly had to tie his hands to the door and centre console and his feet to the bottom of the drivers seat to ensure that he could not lash out.  This may sound dreadful but this was the only way we could be sure that we could get home without another incident and safety for all of us was now paramount.

We could not risk stopping and we were so scared that someone would see this man in the car clearly looking drugged that they would call the authorities.  I sat in the back of the car with Jack, soothing him and talking to him gently, trying to keep him calm and Jared sat in the front with David.

We drove 800 miles straight to the Eurotunnel check in, we were originally booked on to a ferry but we knew we could not get Jack out of the car so had switched to the train and prayed that we would not be asked to get out of the car as how would we explain what we had done to my son, can you imagine that conversation?  Just a mile from our house Jared had a seizure in the car, I am amazed he had waited until we got home because he also suffers from anxieties but he was an absolute trooper and I cannot tell you how very proud of him I was because he had endured a good thumping and still managed to smile.

When we finally walked through our front door, I burst into tears exhausted from the strain of getting us all home without an accident.  I got Jack in the bath as he had messed himself and the following morning his care home in Kent picked him up.

It then got worse.

Before the incident Jack used to come home every other weekend but now refused to get into my car.  If I visited him at his house he refused to see me, slamming his bedroom door in my face.  The home then started bringing him home for a visit via their mini bus, but when home would lash out at all of us.

Jack was clearly suffering, but with no language how could we find out what was wrong?  He had started sleeping on the floor in his bedroom at the care home, refusing showers/baths and wanting to wear the same clothes every day. This abnormal behaviour went on for some time, and it was clear his lashing out was actually a cry for help.

Finally he got the help he so desperately needed.

May 2014, a psychiatrist visited the home and he assessed Jack over a few hours and diagnosed him with severe depression https://www.mentalhealth.org.uk/ at last we knew what was wrong.  The doctor also said the house he was living in was far too big with 10 residents and this was not helping his mental well-being and was adding to his anxieties and killing him.

Very quickly we had social services involved and within a few short weeks we had found a new house with just two other ladies living in it and Jack was moved two days after his 24th birthday.

It has taken nearly four years but Jack is now getting better and has actually achieved so much with his new care team.

He will be on medication for life https://beta.nhs.uk/medicines/fluoxetine/

Last year he went to Edinburgh on a plane with his care team, and he loved it.

Jack then went to Marbella in October by plane with his care team sitting in the sun, eating paella and embracing life.

Just last week he got in my car with Jared after 5 years, I drove them both down to the beach and we walked along the sea front and both Jared and Jack were really happy, and me my heart was bursting with love that Jack had after all these years sat in a car with his brother.

Hopefully, maybe, one day he will be able to holiday with us again.