Nino

IMG_9681yawn.jpg

Nino was born in September 1998. Pregnancy and birth were without issues. At birth he had jaundice as did the other 3 babies in our ward. We stayed 4 days until he was fit and well to go home. Over the next few months Nino struggled with severe reflux and eventually around 5 months he was admitted into hospital for investigation & observation. We stayed 3 days and our miracle cure Gaviscon was found to help keep feeds down. We left hospital and all seemed fine, we had a few adjustments to make, like Nino could only sleep tilted. We just got on with life as first time parents with a beautiful new baby. After 2 weeks we received a letter from Consultant to meet at the hospital for check up. We went into the meeting expecting to be told how well Nino was doing and to be discharged. This was not what happened.... We went into the room, I glanced in the corner of the room to where a nurse was sat, head down & wondered what she was doing there. We sat down and Consultant explained that during the stay in hospital several doctors who examined Nino had recorded concerns in their reports, concerns that were investigated with the bloods they had taken prior to our discharge. No-one at that time told us that's why they were taking bloods, we just presumed it was routine. He then hit us with, "Im sorry to tell you that it is unlikely that Nino will ever get a normal job as he has Down Syndrome" I can't tell you what he said for the next 5 mins or so as I was in complete shock at what he had just said....I faintly heard "its your decision" and I suddenly clicked that the nurse was there just in case we decided to leave our son at the hospital due to the information we had just been given.

We left the hospital that day and went to my husbands family. They were and always have been fully supportive and love Nino unconditionally as do my family. I admit that I cried, a lot, and felt completely overwhelmed by everything that was happening, with a strong family around us we just seemed to get on with things then. We attend all the medical appointments, but I refused any other support offered or help as I wasn't ready. In all honesty I can say now that I coped by going into complete denial and telling myself that they got the bloods mixed up and it was all a big mistake. I didn't feel sorry for us as a family but for Nino, I just didn't want him to struggle growing up. I didn't apply for and DLA or join any specialist groups as that would mean accepting the diagnosis and I didn't think I had the mental resilience to do that. He attended a private nursery with some additional support from a LSA but coped and progressed well as they were fantastic with him. It was at this time I accepted support in learning & using Makaton to aid Nino from a Speech and Language Therapist who visited us at home. He then went to our local mainstream primary with a full-time LSA who was totally amazing, he was supported and included well.

IMG_9366yawn.jpg

At around the age of 7 we noticed things changing, he was being mothered by the girls and teased by the boys and he began to display withdrawal behaviours and became very unhappy. Both the school and myself agreed that it was time to look at specialist provision, due to his educational needs the Local Authority were supportive and quick to action the change of placement. We eventually accepted a place at a specialist school and Nino was much more settled and happier until aged 12 he disclosed to me that another boy had been hurting/hitting him and telling him that because they were friends he could do this and for Nino not to tell anyone or he wouldn't be his friend anymore. With my knowledge (I was teacher in a different specialist school) I was able to swiftly demand a change of placement and the local authority were in total agreement, they didn't have a choice legally, and Nino was moved to my school within a month. This move was the making of him, he then enjoyed 5 years of happiness, adventures, fun & development and made some fantastic friends. Whilst at school in post 16 he began Work Exerience at Bristol Rugby (now Bristol Bears) Spectrum Project, he was the 1st student with a learning disability to be placed there and due to his success they are now able to have other student from the school attend WEX yearly. He left school to go onto Bath College and was offered a permanent assistant coach role within Bristol Bears for the day a week he isn't at college. 

IMG_9476yawn.jpg

Nino is now 19 years old, he is a 2nd year full time student at Bath College studying Life, Indepence & Living Skills (he loves it & Staff are very supportive with his additional medical needs), he has a beautiful girlfriend called Olivia and they have been together 3 half years, he is a competing Special Olmpic Swimmer, Vice Captain of Bristol Sharks Squad, he is goalkeeper/footballer for Keynsham Mencap Football Team who won the league this season, he is an Assistant Rugby Coach at Bristol Bears, he weight trains 3-4 times a week, schedule permitting. He is also a model with Zebedee Management. He is totally health & fitness focused with an excellent diet supported by his dad. He has a full weekly schedule, supported by me, dad and his PA. He is a great Big,Little brother to his 15 year old sister Lia (they adore each other)and he is my Hero. 

The journey has been a difficult one at times, with social issues, medical issues, inclusion and acceptance issues... But I have never given up in supporting Nino in whatever he wanted to do. I've always encouraged him to give things a try, see if you like it then decide if you want to do it or not. Nino has been my teacher throughout the years, he has taught me tolerance, unconditional love, acceptance, faith, hope, endurance, forgiveness, kindness, generosity gentleness, hugs cure everything, laughter, always dance like no-ones watching and always sing at the top of your lungs like no-one is listening.

In his own words "Me love my Life" Down Syndrome is just a tiny part of Nino, its like the glitter on top of his personality, it highlights & accentuates his qualities whether tricky or amazing. I feel privileged to experience my life as a support role to my sons leading role and would not change a thing...ok maybe just 1, stop him "tidying" my things to places he can never remember where he put them, without me asking him to do so in the first place!!!! 

For expectant or new parents I would say celebrate your baby, rejoice in all that he/she makes your heart feel. Don't feel guilty about anything negative or positive that you feel, go with it but be realistic and truthful in what you need to cope, only you feel that way and you need to help yourself heal. Realise early on that the journey you are about to go on with you little one is going to be one hell of a ride with some stunning scenery along they way and a few bumps and even a derailment or 2..BUT it will be worth it as you get to witness them achieve, grow and become part of your beautiful family. They may just need a little more time, patience, humour, practise, encouragement and hope than you thought you were capable of giving any other human being, but you will because they are you son or daughter and you love them for being just that. Remember Down Syndrome is the glitter that makes their personality sparkle even brighter. Dream, Believe, Achieve We are the The Lucky Few!