MY STORY: Sarah Stevenson and Captain Jack

7-year-old Jack Stevenson

CAPTAIN JACK‘s mother, SARAH STEVENSON from Bicester Oxen, England shares her story with We Are Daytrippers:

I think for any parent, making decisions for your child is always difficult and especially so if you have a child with special needs. I am Mum to Jack who is 7 years old and born with Down’s Syndrome. At our 20 week scan they told me and Jack’s Dad Mark, that’s there was a chance that our baby boy would be born with Down’s Syndrome as his neck measurement was slightly larger than average. We chatted to the specialist midwife about our options, but for us there were no options. We would have our baby regardless. No amnio and no abortions. It was a short chat with her!

Jack decided to arrive into the world slightly earlier than planned (6 weeks too early in fact!) and was almost born on our neighbours decking as I was adamant I had indigestion! First time Mum and all that. After a mad dash to the Horton Hospital, Banbury Jack shot out an hour later after the mention of forceps! After a short cuddle he was whisked off to the Special Care Baby Unit (SCBU). The consultant told us that they thought he had Down’s Syndrome. At the time we didn’t cry or get upset we just knew that we would care for and love our baby no matter what. Jack was in SCBU for 6.5 weeks which was quite hard going but he finally came home only to be admitted again after 3.5 months for open heart surgery. We didn’t care that he had Down’s Syndrome just as long as he survived the operation. Looking back now I don’t know how we coped seeing our baby connected up to all the tubes and wires on the Paediatric Intensive Care Unit but we knew he was in good hands and you just have to get on with it!

Newborn Captain Jack

We had a few visits to hospital over the next few years mainly for chest infections. He vomited up to 7 times a day every day due to the build-up of mucus on his chest and faulty valves at the top of his stomach, and failed to put on weight. We used to carry a plastic ‘sick’ bowl underneath his buggy just in case! We didn’t let this stop us doing anything travelling to the Seychelles when he was 6 months old for our honeymoon as well as Lisbon, France and Cornwall! Through all of this Jack was still a contented baby taking on these challenges as they were thrown at him. At 2 years old we went on a holiday to Crete and he suddenly became a different child with regards to his health. Virtually overnight he stopped being sick and started to put on weight! He was also a floppy baby and didn’t walk unaided until he was 4 and a half years old. Mind you that didn’t stop him bombing around on his bottom and then later on with his walker. If you see him now it is difficult to believe how poorly he was early on because now he runs very fast and eats loads! He is very sociable, but very stubborn and only wants to do what he wants to do!

When Jack was 4.5 months I joined our local support group Down’s Syndrome Oxford which has been invaluable to me over the last 7 years. I took over as treasurer and have currently just handed over to another volunteer after 5 years in the role.

When Jack was ready to start school we decided to put him in to our local mainstream school in Bicester, Oxon since most of the advice we received suggested that children with Down’s syndrome benefit from being around other ‘typical’ children and could learn by copying them.

During year 1 Jack’s behaviour became worse (he had always been a thrower!) often reluctant to line up, go into class, stay on task, to do as he was told by his teacher, or sit on the carpet so we agreed for him to repeat the year. This didn’t help his behaviour and if anything the situation continued to get worse. This was a very low time for me and as every time I collected him there was negative comments and his whole education was becoming about his behaviour not what he had learnt. I didn’t know what to suggest or do. I contacted various professionals to try and get some advice but nothing really helped. The Educational Psychologist involved in school suggested he have his 1:1 sessions as normal but that he went back into reception (joined with nursery) at other times to try and build up his social interactions with the younger kids. Unfortunately this did not help and Jack would still lie on the floor, refusing to budge only wanting to have an adult’s attention. He would also behave like this at home so it just wasn’t at school. Every morning when I tried to get him to eat his breakfast or get changed or go to school he would refuse, lie on the floor and refuse to budge! I did go through a couple of very low weeks last October when I just was about to give up but then Jack comes along gives me a big smile, a huggle (a hug and a cuddle) as we call them and tells me he loves me.

Smiles all around

Earlier this year when the Head teacher had said they didn’t know what to do with Jack in September I knew the problem with his behaviour wasn’t going to get better here and that this mainstream school despite the care of the staff was not right for him anymore. So when the Ed Psychologist mentioned perhaps having a look at our local special school we decided to make an appointment.

I was very upset at the time (February 2014) about Jack attending special school but was impressed by what I saw when we visited. All the questions and concerns I had were answered by the Head teacher and Mark and I both liked the idea of smaller class size and that this would probably benefit Jack. I think I was so upset about special school because I worry about what will happen to Jack when Mark and I are no longer here and who will help him. At special school the staff teach the children about being independent such as cooking, getting dressed, money etc. which are essential skills needed to look after yourself. We also sat in on a lesson in the class that Jack would be joining should we decide to send him there. There were 6 children, 1 teacher and 3 teaching assistants and I was surprised how calm and quiet the environment was. Each child could be taught at their individual level and with the specific help they needed. We decided to get Jack into the special school ASAP as I felt he was not achieving at the mainstream school. He started after Easter with a few mornings accompanied by his TA’s from the mainstream school before attending officially after May half term. He also gets transport to school provided which I wasn’t so sure about but as school has been so good at communicating with me I don’t feel I am missing out on the after school chats when I would have pick him up. He seems to enjoy travelling on the bus with some of his class mates!

The Stevensons

Well what a surprise in the first full week it was like having a different child. He actually wanted to go to school! He liked his new Teacher (Mr M) and was keen to talk about his new class mates. I haven’t had the battles I was having every morning to get him to school. He is more willing to get dressed and wait outside for the bus to arrive. Obviously, we do still have the odd battle and refusals to move or do anything, but generally he seems happier. This makes home life much better. So now he has been at special school for 5 weeks and I think it was the best thing to do. His speech has improved as well as his behaviour. Whether it was that the mainstream school we chose wasn’t the right place or the fact that any mainstream school would never have been right we’ll never know and it is very early days at his new school but it seems to be going in the right direction at the moment.

Sarah watches as Jack feeds the Giraffe in 2013 at London Zoo.

We became involved with Daytrippers after we’d been to the Special Need’s Day at London Zoo. This has been our fourth year attending. Last year Jack was the Daytrippers Ambassador and was allowed to feed the giraffes. He loved it. We also attended Daytrippers 10 year Party and a music event that was held in London. We have just attended the Brighton Sealife Centre Trip which was at the weekend. Jack loved the sharks and feeding the turtles! Thank you Daytrippers.

Please feel free to contact me regarding anything I’ve talked about!

sarah.stevenson68@yahoo.co.uk

MY STORY: Melanie Preston

Melanie and Bob Preston

Nurse and Mom MELANIE PRESTON from Knoxville, Tennessee is pregnant with her 3rd child who will be born with down syndrome in June 2014.  She has agreed to update the We Are Daytrippers blog throughout her experience leading up to the birth of her son Elliott and their experiences as a family.

Here is Melanie’s story:

Many people whom I have met or read their stories of their prenatal diagnosis of Down Syndrome remember the exact date they were delivered the news.  I can honestly say I have no idea.  Not because it was a terrible moment that I suppressed in order to forget the shock but perhaps it is because I already knew.

My husband and I met in 2010 through online dating, that’s right online – who knew it worked!  We were married in November 2011 and our first daughter arrived in January 2013.  I also have a 13 year old son from a previous relationship who is a great help and a better big brother than I could have ever imagined.

Knowing we wanted to have more children and have them close together because we are in our late 30’s was why we decided to start trying right away after the birth of our daughter.  On our second year wedding anniversary I took a pregnancy test that was immediately positive.  A range of emotions followed when I realised I would have two children 18 months apart and an active teenager!  Busy would be how our lives would be summed up for the next few years but over time it would pass and be worth it.

From the beginning of this pregnancy I felt like something was “different.”  I didn’t feel right.  Not exactly sick all the time but extreme fatigue and just something I couldn’t put my finger on.  My doctor asked that we return a week later as the heart rate was too low during the first check up.  Everything looked fine on ultrasound so we scheduled in a nuchal scan.  The test came and went with no indication on ultrasound that anything would be amiss but when the blood work came back I received a call that my risk was elevated to a 1 in 44 chance of down syndrome and I was referred to a high risk obstetrician at that point.  Several days later I went to the consult and had more blood drawn for the fetal DNA testing and we also learned we were having a BOY.  That was amazing news because my husband was beaming at the news.  The wait for the test results to come back was over a week and people kept reassuring me that it was very unlikely that the tests would show a positive for down syndrome.  In fact, according to the screening, they were correct – there was only a 2% chance.

We did a genetic test to be sure and when the counselor called to let me know our chance had increased to 99.8 % of down syndrome I wasn’t surprised or shocked and I didn’t shed a tear until I thought about having to call my husband and tell him that the son he was excited for wasn’t going to be what he had always pictured.

We chose to have an amnio several weeks later not to confirm the diagnosis but to figure out which type of down syndrome he had and it turns out it is the completely random non-disjunction type (which will not raise my odds in future pregnancies as we would like another child).

Dreams change; ours did in an instant but what I have learned is they can be replaced by a new dream.  A dream of hope and limitless potential.  We never questioned whether to continue with the pregnancy as we knew we could love him regardless of his differences.  I started researching everything I could find about down syndrome and joining various online blogs and forums to get the latest information.  Many things seem to have changed in the special needs community in recent years.  There are so many advocates for these children and resources.  The outcomes have improved and who knows where we will be in 20 more years.

We already named our son.  He will be called Elliott because I have always loved the name.  The associated medical problems that can occur and many that will remain unknown until he is born completely freak me out.  I have to be honest, I’m scared of the unknowns.  It really isn’t the extra chromosome that worries me but the underlying health issues are daunting if you actually start to look at the “what ifs.”  So for now I have stopped googling medical issues and down syndrome in the same search as it’s better for my health and blood pressure.  Currently I’m 35 weeks with an induction scheduled for 37 weeks so not too much longer until we meet Elliott and his extra chromosome.  Stay tuned in the next few weeks as I’m sure this is going to be a wild ride.  I can’t wait to introduce you to my youngest son.

Written by Melanie Preston

follow Melanie on Twitter at @augustinmarch