Quality of life?

There’s a phrase that is often used in relation to a prenatal diagnosis and the phrase is ‘quality of life’. If you read comments on any articles or post surrounding prenatal testing, including especially the latest ones regarding Emmerdale, they are littered with talk of ‘quality of life’ and this being a reason why not only would they personally choose to terminate a pregnancy, but why everyone should and that it’s selfish not too.

The problem with ‘quality of life’ is it’s entirely subjective.

To the person living in a mansion with an abundance of outdoor space, what kind of quality of life does someone living in a 1 bed flat have. What if those living in the cramped flat are happily married with a beautiful baby and feel sorry for the lonely single person living with all that space and no one to fill it.

What if a non disabled person feels someone in a wheelchair has less quality of life than them, but the wheelchair user is a successful sports person and travels the world and the non disabled person has never left London.

Who decides what ‘quality of life’ means. We can only measure quality of life by comparisons with our own lives surely.

You see what I’m trying to say here.

But what about those babies that could have an awful heart problem and need surgery. Well yes they might have to have a surgery then they mostly get better and carry on having a fab life.

I’d challenge anyone to try and say that my son doesn’t have ‘quality of life’. Living the life of Riley more like.

It genuinely baffles me now when people use ‘quality of life’ in a discussion around terminating babies with Down syndrome. I know why they think it, I might have thought it myself once upon a time.

I suspect what they mean, and may not want to admit is they are scared about their own quality of life. They think a child with a disability is a burden, a problem, something that will hinder their lives going forward, perhaps cost them more.

It again comes back to the fear of the unknown. The fear of something that there is a misconception and a biased towards.

When people start talking about quality of life in regards to Down syndrome I really implore them to reach out and speak to actual people with Down syndrome. There are many self advocates out there talking……who is listening to them? There is an entire community who dedicate our time to shouting from the rooftops the worth of our children and to show them the genuine quality of life that our children and us are privileged to live. We can’t all be wrong eh?

10 Zoom Therapy Tips for Parents with Preschoolers

With covid-19 seemingly sticking around for a while and zoom/online events now the new norm, you might find that some therapies that used to be in person are now online. You might even be new to therapy and jumping straight into an online session. We have been fumbling our way through weekly sessions for the past few months and here are a few tips from a parents perspective! (Some serious and some lighthearted)

1. Lower your expectations, then lower them a little more. It’s unlikely your kid will sit nicely and cooperate for an entire session so try your best and try not to worry.

2. Try and find a quiet space with no distractions. Easier said than done I know. We’ve tried various techniques in our house including setting up a table in the hallway, sitting on the bed, at the kitchen table. Each comes with its challenges. We have twin baby siblings who are huge distractions so I try not to do it in the same room as them. Our latest success was trying it in my friend/neighbours space who is child free so there is nothing distracting or noisy. This may be difficult depending on current Covid guidelines!

3. Try to get a scheduled time that doesn’t clash with nap time/mealtimes if you think you kid will struggle with a change of routine that day. If you think it will cause a big issue, speak to your therapist and see if you can move slots.

4. Keep the snacks/drink handy. I’m not sure what the therapists think of this but I find it keeps Zephy occupied and interested in between other kids having their turns.

5. Make suggestions! If part of the therapy isn’t working for your kid such as a movement song they aren’t interested in, or a theme they don’t like, see if they can adapt it to your kid. We had success with this in our sessions. Both boys had an interest in pirates so they worked that in and both of them engaged more. We also trialled breaking the session up and having an individual 20 minutes instead of a group session of 40mins to eliminate the waiting time.

6. Try not to worry about how much is done with your kid during the actual session and think of it as training for yourself to learn activities that you can replicate during the week when it’s quieter, less stressful.

7. If you need resources for your session don’t leave it to the last minute to grab them as you can guarantee you won’t be able to find the baby doll and the hairbrush and the pot of playdoh at 10:28am when your session starts at 10:30am so try to keep it all in a bag and have it ready and set aside.

8. If you have to make your own resources and it involves printing and laminating and the thought of that is overwhelming, speak up, ask for help, you may hit the jackpot and have amazing therapy partners who will kindly offer to do it for you!! (Thanks Sharon and Ruth, your kindness wont be forgotten)

9. Don’t compare you child to the other in the session. It can be so demoralising and demotivating to see another child sitting nicely and completely the activities of speaking well if you aren’t seeing the same results. Be kind to yourself. All the children bloom in their own time in different areas (talking to myself here!)

10. Have all the chocolate and wine….you deserve it.

It’s a Zephy thing…

I got in the lift at Balham station alongside another mum with a toddler in a buggy. He leaned forward and pushed the alarm button. His mum quickly moved him away and apologised, sorry he does this all the time. I smiled and said don’t worry my son is the same. Zephy has a thing for pushing the alarm button in the lift at home. I can see the appeal, it’s a bright coloured button that makes a sound when pressed. As with most of his behaviour that I try to curtail, the same thought flashes through my head, it doesn’t linger there but it’s there nonetheless. Is this a ‘Down syndrome’ thing. Is he doing this because he has Down syndrome or is he doing this because he’s 3. I guess what I’m really thinking is will this be a phase or is he still going to be pushing this alarm in 10 years time, is this a behaviour that makes him different to other children, is this something only I am dealing with.

It started when he was born and in the special care unit (probably even in pregnancy if I’m honest). Anytime there was a test result or something going on with him…his sleepiness, his oxygen levels, his nappy rash….I’d quietly almost whispering say to the dr or nurse…is this because he has Down syndrome. The answer was usually no, it’s because of xyz. I soon learned that him having Down syndrome was almost a bit of a non event in the special care unit. They were there to treat his clinical issues and that’s it. There was certainly no big sign over his cot saying ‘T21 here’ like I’d sort of expected when I was pregnant.

It’s carried on ever since. It’s just a niggling little voice that appears from time to time.

So I absolutely love it when I see everyones typical 3 years old doing the same kind of stuff Zephy does. Tell me more about your child that throws his food on the floor, moan to me about your child that has crayoned on your wall and floor. Got a kids that pushes doesn’t share…..I’m all ears. Carry on sharing the pictures of mess and destruction as I love it!!

The baby group

We haven’t been for a while but since our schedule has changed we are free again to visit ‘the baby group’ as it’s known in our house. It’s an SEN group in our area and often the first place a parent will come with their baby who has been diagnosed with something prenatally or at birth. It’s relaxed. The babies play and someone leads some singing, the older babies have a snack overseen by a speech and language therapist. Someone makes you a cup of tea and everyone gushes over your baby. It was a lifeline in the early days for me. I remember the first time turning up and not knowing what to expect. There was other babies there with Down syndrome and some older kids and some babies with other disabilities and issues going on and it was hard to see but opened my eyes to a new world. I used to take along Zephy’s big sister who was 2 at the time and she loved to play with the babies and toddlers. Not once did she ever ask about their differences. It was so lovely so I’ve been really looking forward to being able to go back. Zephy is now the big boy. I still get my cup of tea and now my twins play alongside the other babies. Zephy now plays with the same things Elisha did at his age. He heads for the play kitchen and pretends to eat and make a cup of tea. It’s time to sing, a little girl who is an older sibling hangs around in the background not wanting to sit with the babies. Zephy catches wind of her and is off like a shot, a playmate for him. Someone he can relate to. Maybe she reminds him of Elisha. She takes his hand and leads him to play and play so beautifully. They make food and give drinks to baby dolls and wear colanders as hats and play with a giant peppa pig. Zephy signing pig whilst she speaks. They play together rather than alongside each other. He babbles to her and signs and whilst she doesn’t know what he’s saying they understand each other perfectly. He gives her a kiss, a sign of friendship, and it’s beautiful and perfect and everything the baby group should be.

Be Kind

Perfection is not dependent on how many chromosomes you have

Beauty is not dependent on how many chromosomes you have

Health is not dependent on how many chromosomes you have

Happiness is not dependent on how many chromosomes you have.

All of these things coexist. Everyone and at the same time no one is perfect, all babies are beautiful, health is luck of the draw and is something to be thankful for and a privilege if you have it, it’s certainly not entirely linked to chromosome count. Happiness is for everyone.

Lots of us who have children with Down syndrome are more conscious of our language now, based on the journeys we’ve been on.

‘they suspected our baby had Down syndrome but he was perfect when he was born’

‘they thought our baby had Down syndrome from the scan but he was completely normal’

‘We don’t care if it’s a boy or girl as long as they are healthy’

‘Omg I can’t believe someone thought your baby had Down syndrome. He’s completely perfect and gorgeous looking. How terrible and rude’

‘Her baby is ugly, looks like a downs baby’

Whilst the world has come so far in terms of acceptance for differences, it still feels like there is a stigma surrounding Down syndrome, there is an offence if it is suggested that you child may have Down syndrome when they don’t. People still use Down syndrome as an insult towards people’s behaviour and looks. Imagine at your most vulnerable time as a parent looking at your child’s hospital notes and seeing the words ‘Facial features: Abnormal’.

Its allowed to hurt and we are allowed to challenge language in an attempt to make the world a little kinder and accepting for our children.

bekind #dontbesorry #downsyndromeawareness #positiveaboutdownsyndrome #bethechange #dontlimitme #wouldntchangeathing #wdsd2020

3 years ago today…..

3 years ago today I sat waiting.

3 years ago today I felt sick to my stomach as an unknown number flashed up on my phone. I knew who it was and I took a breath knowing what ever they told me, life wouldn’t be the same again.

3 years ago today I sat on my daughters bed in an empty house and heard a midwife tell me ‘we have the results back and the baby has trisomy 21’. I replied ‘so my baby has down syndrome?’ ‘Yes’ she replied. ‘Okay’ I said.

She then asked me if I wanted to ‘interrupt the pregnancy’. ‘No’ I replied and that was that.

3 years ago today I called my husband at work to tell him. I then spoke to my sister who said ‘well that’s good isn’t it, he can survive and be fine with down syndrome’

I realised she was right. He would be fine. We didn’t know at this point if he would survive the hydrops but we prayed and hoped.

3 years ago today I knew nothing about Down syndrome or people with Down syndrome.

3 years ago today I felt I had lost something and I was sad and I grieved and I thought of lots of things I thought he’d never do.

3 years ago today I had no idea how life changing this would be. In a sometimes challenging way but also in an amazingly wonderful way. In a way that has opened doors, has made me a better person and led me to some of the most incredible people.

3 years ago today was probably one of the hardest days of my life.

3 years ago today was diagnosis day….

20 week scan and hydrops

With the usual nerves before an anomaly scan, we went it. I had a confidence though, we’d done this before with Elisha and all had been perfect, I’d been feeling the baby move a lot for the past 4 weeks and I was feeling great. The 1:29 chance of a baby with Down syndrome was so far at the back of my mind I didn’t give it a second thought. (I realise now that a lot of people would have been more concerned than I was with that chance ratio!!) I truly believed my papp -a level was so low due to me still breastfeeding Elisha and being deficient in zinc so I’d been taking an additional supplement on top of my usual prenatals. I also had an element of ‘this couldn’t happen to me’. I already had a friend who has a son with Down syndrome (hi Tracey and Tyler 😉) so my reasoning was surely the chances of us both having children was impossible lol.

I lay on the bed and breathed the sigh of relief as you see you baby moving around on the screen and hear the heart beat. The scan was mostly uneventful to begin with, the sonographer remained upbeat throughout whilst taking measurements and talking about our baby. The first hint there was anything wrong was near the end of the scan she said, I’m just going to get my colleague to come and have a look at something. I started to feel nervous. It must be something bad right? They only get a colleague when they thing something is wrong. Someone senior came in and sat in silence whilst she scanned.

She finally spoke….there are some concerns with the baby, there is fluid around the babies heart, lungs and brain. It’s something called Fetal Hydrops. I later found out this is the name given to fluid in two of more locations in the body. They also told us the nuchal measurement was now out of a normal range and the femur length were shorter than normal. We were ushered into the ‘bad news room’ to discuss our options. They shared with us that what they had seen could be indicative of a chromosomal condition and that the severity of the hydrops was so much so that they didn’t expect the pregnancy to carry to term. We were offered a termination there and then. Our other options were to continue the pregnancy as normal or to have an amniocentesis to find out if there were any chromosomal condition. I’d always said I’d never have an amnio but when faced with what they were telling me I felt compelled to know what was going on, I wanted to know everything I could about this baby. Maybe by knowing we could look into treatment of the hydrops. I wanted to rule out certain conditions. So they booked us in for an amnio that afternoon. We had a few hours to wait so we went for a walk around the gardens at St Thomas and went for some lunch. It seems surreal now. Matt had to leave to pick up Elisha from nursery so I went in for the amnio alone. I remember saying to the sonographer as I waited ‘Am I going to get to take a baby home at the end of all this?’ and she said ‘No’ as gently as she could. The amnio didn’t take long but it was extremely uncomfortable. The needle seemed huge, I couldn’t look at what they were doing and there was a lovely nurse with me holding my hand. I was told to go home and take it easy. I was in no fit state to return to work so I took the rest of the week off whilst I recovered and waited for the test results.

We were obviously devastated with what we were told at the scan but we held onto faith that we would see a miracle. That Zephy would overcome the hydrops and survive the pregnancy. I was told that the fluid may eventually stop his heart or lungs from developing and I would stop feeling movements. His movements continued as normal and within a month of the 20 week scan the fluid started to reduce until it was back to a normal level. We were so very blessed, many others I’ve spoken to and come across have a different story. I think it depends on the cause of the fluid as to the outcomes. It’s often caused by catastrophic defects to parts of the body such as a heart defect, or caused by a virus. In Down syndrome it can be that, but it can also be the result of the lymphatic system taking longer to develop and it is believed this was the case with Zephy. Once that lymphatic system developed the fluid started to drain away.

Breastfeeding Resources (inc Down Syndrome specific)

Here are some breastfeeding resources that I’ve found to be useful. If you know of any more please leave a comment and I will add to the list!

Uk Phone lines:

National Breastfeeding Helpline – 0300 100 0212 (calls answered by volunteers trained by the ABM and BFN)

La Leche League helpline – 0345 120 2918

NCT Breastfeeding Line – 0300 330 0771

Organisations:

The Breastfeeding Network https://www.breastfeedingnetwork.org.uk

Association of Breastfeeding Mothers http://www.abm.me.uk

La Leche League http://www.laleche.org.uk

Specific Down Syndrome Resources:

https://positiveaboutdownsyndrome.co.uk/breastfeeding

https://juliasway.org

http://oakwellbarns.co.uk/breastfeeding-your-baby-with-downs-syndrome/

https://kellymom.com/ages/newborn/nb-challenges/down-syndrome/

https://www.breastfeeding.asn.au/bf-info/down

https://www.ndsccenter.org/wp-content/uploads/CDSS_breastfeeding_brochure.pdf

https://www.breastfeeding.asn.au/bf-info/down

https://www.llli.org/breastfeeding-info/special-needs/

https://www.childrensmn.org/educationmaterials/childrensmn/article/15844/breastfeeding-an-infant-with-down-syndrome/

https://chromosomesandcurls.wordpress.com/2018/08/07/how-breastfeeding-can-help-your-baby-with-down-syndrome/

https://chromosomesandcurls.wordpress.com/2018/08/01/ten-tips-for-breastfeeding-a-baby-with-down-syndrome/

https://themilkmeg.com/breastfeeding-josee-ten-tips-for-breastfeeding-a-baby-with-down-syndrome/

https://iamriver.net/2017/07/19/breastfeeding-a-baby-with-down-syndrome/

https://www.mattoslactation.com/blog/2019/7/20/breastfeeding-and-down-syndrome-part-one-anatomy

https://www.raisingcaleb.co.uk/single-post/2019/05/29/Breast-feeding-a-baby-with-Down-Syndrome

Other useful websites

https://kellymom.com

https://www.cibii.co.uk

https://www.basisonline.org.uk

’Watch out for the baby…..’

I had hoped that now Zephy is walking this small bug bear of mine might become a thing of the past but it still happens quite regularly and that is mums and dads of typically developing babies telling them to ‘watch out for the baby’ ‘look out for the baby’ or even ‘watch out for the little baby’ when their child approaches Zephy, tries to go past him, tries to interact with him in any way. The majority of the time these are babies/toddlers significantly younger than Zephy.

Now I completely get it. Before I had Zephy I was almost certainly guilty of it. You want to teach your babies/ young toddlers to be careful of other children in the playground, and soft play. You likely also want to show me that you see my son and can see that he is different to your child, that he might need more protection and that you are being responsible which is great but my son is not a baby. He’s a 2 1/2 years old toddler, with an attitude to match. He also has an older sibling and is at nursery almost full time so is used to rough and tumble. He understands exactly what is being said. His receptive language is very good. He may be slightly smaller than average or look smaller to you because he often will sit down on the play apparatus instead of barrelling around it. He’s learning, and observing and taking things in. He may be a bit slower to climb things because he hasn’t been walking that long. But he’s certainly no baby!

Whilst your child may speak a few words and my son doesn’t, my son can string 2 or 3 different makaton signs together to communicate. He will regularly tell me what he wants and doesn’t want. He will observe what other are doing and point it out such as seeing someone sleeping etc. He’s an extremely communicative child. He can also be rough himself and push and pull children that are in his way!

If you are a parent of a typically developing child and reading this. Here are some tips that Zephy and I would like to share

1. Just refer to him as a little boy instead of a baby.

2. Ask his name! I promise we are friendly and I love talking about my son to anyone who will listen. You can ask his age and I will tell you and explain how hard he has worked to get where he is today and how proud I am that he can climb and navigate the playground.

3. Teach yourself and your child some makaton signs. They aren’t hard to learn and there are plenty of resources online. Zephy would be over the moon for you to sign to him or respond to him signing to you.

Does anyone else get annoyed by this, I know in the big scheme of things it’s a small thing but sometimes the small things matter. Anyone have any tips on how to handle this situation!?

Pups Save the Bath

As a parent to a child with Down syndrome, I’m always aware that there could be some sensory issues to watch out for. So far Zephy doesn’t seem to have any concerns with that…he used to have a slight issue with people laughing which would make him cry but he’s been much better recently and he hates wearing shoes and socks (who doesn’t) but apart from that there’s been nothing of major concern.

About 9 months ago Zephy decided he hated the bath and shower. He around the same time decided he didn’t want to go swimming either. We have since had a battle to get him washed. We tried everything from bathing with his sister to showering with us, to toys in the bath etc and nothing worked. It was always a two person job to wash him whilst he writhed around like a slippery eel. It was traumatic for all of us. Eventually I thought maybe this is a real sensory issue around water or something but I wasn’t sure as he was happy to splash his hands in water and launch himself at my cup of tea so I was a bit baffled. I reached out to one of the occupational therapists we work with for some tips. The tips looked great but I didn’t feel any of them would be connected to the issues we were having. I kept meaning to try them out, massaging with a soft brush, gentle music etc but I didn’t get chance to.

Then my mum arrived from America for a visit. She had randomly, knowing Zephy’s new found love of the Paw Patrol, grabbed him a pack of bath finger puppets. He loved them immediately, and would go around the house putting them on people’s fingers and hiding them.

I suddenly wondered if I could entice him in the bath with them so I said to him let’s play in the water with the pups. I filled the bath and put them on the side of the bath and knocked Chase into water. Zephy found it hilarious and carried on knocking them all in. Then he seemed happy for me to pick him up and put him in the bath. He spent ages splashing around with the Pups and knocking them off the side or putting them in a little boat. I was able to happily wash him stress free whilst he played. Since then we have never had a stressful bath time. In fact now he cries when we try to get him out and spends most of his time plotting how to get into the bathroom!!

Thank you Paw Patrol!!