Screen time

I've been screen free this month. Well, I was screen free for a week. It turns out my husband and I had different ideas about what we'd agreed to. I thought it was no social media, no internet usage and no games on the iPhone or iPad (I'm a big fan of playing Settlers or doing sporcle quizzes when nursing). We had already agreed that to find out a piece of information, the example discussed was a restaurant telephone number, you could google it rather than trying to locate yellow pages etc. Then I discovered half way through the first week that my husband thought BBC news was ok, and he wanted special dispensation to go on Twitter and read up on a legal trial he's been following in the U.S. I continued to be screen free aside from texts and emails and found I was sorting photos and reading books more, particularly when feeding Rory. 

But then I had to find out some pieces of information (time and location of a meeting I'd to go to was only on Facebook), opening times for a gym I was taking the boys to, and I started to notice I was picking my phone up more. I was reading emails, then clicking through to websites if I wanted to see the advertised offers and realised I was starting to lose control of this month's  project. I also realised Pinterest didn't  fall into a banned category and now I finally get the people who say it's an addition! I do have considerably more ideas for our bedroom redecoration though. So I decided to go back to my understanding of the original boundaries. No browsing the internet even if it was a project like doing holiday research. I think my husband is using the wider definitions but it's amazing what it has lead me to do:

- I went to a fabric store to get samples of material I'm considering for curtains for our bedroom;

- I wandered around a few furniture shops to look for a slim TV unit to fit in a recess. I can't find one! Perils of having a small TV in this 50" world we live in;

- in the afternoon after nap time we went to IKEA and went for a walk and got an icecream. Normally in the afternoons I tend to sit on my phone for a while while the boys play so I can have a mental break;

- I went to a few local shops to try and source furniture for Daniel's dolls house. (unfortunately one only did pink furniture and the other had two wildly overpriced sets that I couldn't justify buying)

I also noticed I have been spending better quality time playing with the boys as I'm not compulsively checking Twitter or googling non-urgent queries such as 'how long to cook a pork chop?' or 'when do baby's top teeth come in?'. 

I'm writing this as I feed Rory, the one time I've really struggled not to use my phone. He feeds most evenings for about 1.5 hours and I'm stuck with little to do if I'm trying to keep light levels low as I can't use my kindle or read a book. There definitely is a time and place for idle browsing but I can already see how this month is helping me find the balance, result! 

Mum of two, 7 months in

Has it really been 8 months since I last posted?! I'm not really surprised. Colin was hospitalised the week after that last post, and then so was I! The pregnancy and life in general became a test of endurance after that and little (not so little) Rory Josiah kept us waiting until 11 days after my due date. 

A few hours after Rory was born, just before we got discharged we got our first 'family of four' photo.

So, how has it being, parenting two? Absolutely exhausting! Day to day I'm still feeling like I just tread water but I am getting out every day despite having few opportunities to rest during the day and I still get a hot meal on the table when Colin gets in from work. Most days. We may occasionally eat out! 

The island unit regularly looks like this! An outward demonstration of what my brain feels like! Chaos! 

Anyway, I was right about not being able to give Daniel everything anymore. My time is split. My attention is split and unfortunately that means there are times when one or even both of the boys is crying despite my best efforts. The positives are so heart warming though. When they hug each other! Ah, it's so beautiful! Daniel has already got such a soft spot for his brother and Rory adores Daniel, he's the one who gets the best smiles and who he looks for when he comes into a room. I can already see Daniel being spurred on by Rory, most recently with his attempts to drink from an open cup. This is lovely right now but I just hope it doesn't become difficult for Daniel when he sees how easily Rory does everything. That is something I struggle with, seeing how little effort is required for Rory to master gross motor skills. Daniel needed physio to learn each milestone and took lots of repetition to refine it. Rory looks like he might be about to do something, like sit up, two days later he's nailed it and moved on to rolling or crawling and all with no therapy from us. I now understand the phrase 'they grow up so fast'!

Pulling himself up to stand is the latest skill. He's perfecting crawling backwards too, which is unfortunately the wrong direction so results in lots of tears!

So, I suppose I've just discussed the practical part. Emotionally I'm drained but that could be the lack of sleep since last Easter, the strain of Colin being sick through all of this (he had a record 5 hospital admissions last year) and finding the jump from 1 to 2 more difficult than I'd thought it would be. At the same time though I have this incredible love for two little boys now, my heart has grown and I am filled with the same intense feelings for Rory that I have for Daniel. I've promised myself that I'll write regularly this year-on my blogs and in my journals so may this be the start of a busy year documenting the nurturing of the twiglets! 

One becomes two

At 34 weeks pregnant I am having to think about the realities of becoming a family with two children rather than just one. Daniel is our world. He consumes so much of us, our time, our energy, our emotions, our conversation. He is the centre. Everything we do is based on how it will affect Daniel. We'd always thought we would have 18 month-2 years age gaps between children. We felt Daniel needed some more time as an only child but not too much as we wanted him to grow up with a sibling close in age and ability. He's so wary of other children and takes time to warm up to them and to have his own playmate he's comfortable with 24/7 well it will be fantastic. We lost a pregnancy last summer which would've left a 2 year 7 year age gap so on his 2nd birthday I felt conflicted about the fact he was getting more time as an only child. I need not have worried. God blessed us with a pregnancy straight away later that month. 

But now, the guilt... the worry... Have we done the right thing? Our child consumes more than I could ever have imagined. But he gives even more back. As he lies beside me now in bed holding my face as he sleeps, I can't believe I will have to share my time with his sibling. How can I give Daniel less of me and even more mind blowing, how can I have anything left for this baby? 

But everyone says they feel like this before their second child is born and your heart grows and makes room for them. That the relationship between your first child and the second blossoms with time and you just know you've done the right thing.

I think I know deep down that's what'll happen but I will still mourn the loss of my only child becoming my eldest child. 

I don't know if it is different for us because of Daniel's extra needs, but I just hope that this sibling becomes his best friend. That they can learn from each other. And that I can be the best mum that I can to them both. 

Five month blog silence

It wasn't intentional. Life just passed me by! Not long after my last post, I found out I was pregnant again and before long the sickness and intense tiredness hit. The run up to Christmas was tough going, and then just when I felt I was getting my stride back in the new year, Daniel took ill and then so did both of us! 

I often find winter tough going-it's dark going to work, dark coming home and the days are cold and in Belfast, often also wet! We got one of those natural sunrise alarm clocks this autumn and it definitely made waking in the deepest days of winter easier, but I long for the longer days. I can feel spring in the air, it won't be long now before the flowers are out and there is a warmth to the sun, and this baby (currently 24 weeks old, albeit the side before birth!) is an actual person living outside of my body! 

So here's to spring and all the positivity it brings! I'm thankful for living somewhere where we see the wonder of creation and the variation in the seasons and long for that first day I leave the house without a jumper. St Patrick's Day. As long as it's not snowing...

Early intervention - the what, why and how

What is early intervention?

Early intervention is the name for the support system and programs that are put in place for babies and toddlers with developmental delays. These interventions occur earlier than in the past, when a child might have been school age before therapies were introduced.

The range and extent of intervention will also vary, due to differences in children’s needs and in provision across different geographical areas. A toddler may just have physical delays, such as not walking within the typical timescale, and would be referred for physiotherapy. In Daniel’s case, he is seen across all the disciplines:

- Physiotherapy for his gross motor skills (meeting milestones such as neck control, sitting, and walking)

- Occupational Therapy for his fine motor skills (things like developing a pincer grip with his finger and thumb, stacking blocks, and pre-writing skills)

- Speech and Language Therapy for speech and communication

Why do it?

Put simply, experts believe early intervention can have a positive impact on young children with delays by developing strategies to help that child, enabling parents to work at home with their child and to support the family unit.

We’ve found with Daniel that he can and does learn, his difficulty is consolidating what he learns, so he may be able to identify items that we name (spoon, plate, teddy, chair) the next time you do the exercise, he may struggle. This is consistent with research that Down Syndrome Education International (in my personal opinion, the greatest authority out there on people with Down Syndrome and how they learn. They run a website full of evidence based research) have done – in particular as noted in this paper: http://www.down-syndrome.org/reviews/10/ The same paper also makes a great explanation of how Daniel uses his advanced social skills for his age as an avoidance technique when he’s finding something hard to do.

Anyway, because of this, we have a program of activities that we do with Daniel and use some very specific techniques with him that will enable him to build his gross motor skills, refine his fine motor skills and learn to speak and communicate effectively. We’ve also benefited from early intervention measures by feeling involved in Daniel’s treatment, meeting professionals who encourage us by observing Daniel’s progress, and gaining confidence in our own skills in working with him.

What do we do?

Daniel’s gross motor skills are incredibly good for a 24 month old with Down Syndrome. He has been walking for over three months, although his consistent falling over has only lessened in the last month or so. He can climb the stairs in a matter of seconds with no help or assistance. He even accomplished four point crawling, which he used as his main method of getting about for about 5 months. This is actually a development stage many children miss or only do briefly, but has been proven to have so many benefits, as it involves working opposite sides of the body together and improves muscle tone. Now Daniel’s physiotherapy is targeted at building core strength, as although he can walk, his standing shows his core is not strong as he sticks his (very tiny) tummy out and his walking is still wooden, like other children would be when they’re just learning to walk. We do this by practicing going upstairs, not difficult as Daniel loves this, and squats. He also spends a lot of time just climbing around, going on his slide and it's all good use of gross motor skills.

'Physio' on the slide

He likes climbing! 

For fine motor skills we are currently working on posting and developing a pincer grip. We have a range of posting toys, but I sometimes just use cotton wool and let Daniel through the holes on our washing basket! He practices his pincer grip by lifting craft supplies like mini pom-poms from one cup to another. We also try colouring in but it's not very successful as Daniel likes to throw crayons after 4 seconds. Most sessions end with putting thick foam stickers on and off scraps of paper which is great practice at using that thumb and finger together! Eating time is also good for fine motor skills like picking up raisins and blueberries.

Just playing with toys can involve fine motor skills

Moving pegs from one container into his sand and water table

Speech is the area we're putting most of our resources in as in our opinion it's the area that will make the biggest difference to Daniel's quality of life. If he can communicate well, it will open many more doors for him in the future. We only started speech therapy at Easter time after being lost in the system (although we had started basic phonics by ourselves) We were then able to be on a pilot scheme in the Belfast Trust area for a program called Hanen, which Colin and I attended 5 parent workshops on Friday mornings over a 2 month period. We found this very beneficial. For example, we learnt we were constantly testing Daniel, saying things like "Daniel that's a dog, can you say dog?" and when he didn't we'd follow it up with "Dog! Say Dog!" which was putting him under pressure. We also learnt how to start commenting rather than leading. So when Daniel is playing with a car, we'll just make a comment about what he's doing, such as "You're putting the car on the table". Daniel's vocalisations improved when we stopped testing and started commenting. At the dinner table in particular we found switching to saying something simple like "Apple. More apple" when handing Daniel food has led to him copying us regularly. The course also taught us to get down at Daniel's level rather than being on a chair while he was playing on the floor, and letting him lead play. 

In addition to Hanen, our SALT has helped with Daniel's drinking as he is on thickened liquids-as he aspirates easily which can cause permanent lung damage as well as temporary chest infections-and is currently helping us transition Daniel to an open cup rather than a straw.

We are also building on the work our NHS SALT is doing by doing the DSE's See and Learn programme. Daniel is at the Saying Words stage for some sounds (eg D and B words) but we are waiting for the release of the Saying Sounds stage as he still has many sounds to master first before learning words. 

Dog! Daniel is saying the word here and doing his version of the sign as he finds the actual sign too difficult. 

How do we fit it into daily life?

Early intervention is partly just how we do life, but does also require some set aside time each day for therapies. I've taken physio off our schedule now as it's incorporated by Daniel's day to day life, so when we go upstairs it just takes a bit longer as I make him climb rather than be carried up. 

We do 15-20 minutes formal fine motor skill practice a day, except the days I'm at work, on top of the everyday stuff like eating raisins or playing with general toys. This allows me to watch Daniel's technique with his more targeted toys (post box, money box) as well as building towers, doing some colouring in or shape sorting. Daniel has a supportive chair from his OT with a tray which we do these activities in and he will climb into the chair at other times so I think he doesn't mind it too much. When he starts flagging, we don't push the sessions and will stop. 

Speech is again, a lot of the everyday, saying the name of things he's playing with and encouraging vocalisations. We don't say 'no' or 'well done' we just repeat the word we think he's trying to say. Along with his Makaton signing (let down by a lack of fine motor skills) we are noticing Daniel is able to communicate a lot of what he needs to (drink, water, milk, eat, sleep, toilet, down are all words he vocalises along with a sign, some are easier understood than others!) and he continues to have an understanding significantly above his ability to speak or even communicate. We also do 10-15 minutes of formal teaching, using flash cards mostly, each day, and a few 'games' of instructions where we are currently improving retention of instructions such as 'give teddy the drink' or 'brush the dolly's hair'.

Daniel is getting on well and we are very grateful for this, and his continued lack of hospitalisation or serious illnesses which can set so many young children back. We are very aware baby's brains are very malleable and it's not a matter of sitting back and accepting Daniel's limitations without doing some work. (Some professionals have led us to believe this is their preferred approach, accepting Daniel will not achieve much in life) At the same time we don't want to push him too much and it's a balancing act we are still learning to manage! 

Isn't he cute?!

Solitude

I have thought about my next blog entry a few times, in fact I started drafting two completely different posts, forgot to save them and never went back to them. And now that I've started a third time, the theme has changed again.

What do I mean by solitude? Well, not being around other people. And actually, it's not so much other people, it's mostly other parents. You see, when you have a baby, everyone tells you how it takes a village to raise a baby, how you won't be able to do this without the support and advice of other mums, you'll need to google everything and not to worry, no one knows what's they're doing. I'm only two years into my journey as a mum, but I actually find that the advice of others, google, and the need for a big support network of friends and family isn't what I need. I need solitude. Of course, I benefit greatly from the support of family, particularly our parents who each look after Daniel a day a week so I can work part time. But aside from that I have tried; I've tried to go to parent and toddler groups, I've tried to not go with my instinct and google something parenting related, I've tried to take part in the baby/toddler chat, but I just can't do it. I get drained and just find myself feeling more distant from the people around me. Our parenting choices aren't the norm. I think they probably fall into the 'attachment parenting' philosophy as we try to respond to Daniel's needs and signals and ensure he is provided with a secure relationship with us as his parents. But then not everything we are doing falls under that banner, so I don't even feel myself able to gravitate towards attachment parenting groups. I just want to stay at home (or go to the farm or head out for a walk) with my husband and son, and quite frankly don't give a hoot about what these other parents are doing. I dread being out and conversation turning to parenting issues, or even people asking me about Daniel, I just find myself clamming up and getting so defensive. 

So, I don't really know what's wrong with me, or how I'm different to other people in finding this all so difficult, but some days I wish I could back off from the parenting stuff and just chat about holiday plans or house renovations and other non political stuff that doesn't drain me. In the meantime, I'll sit with my husband and son and enjoy their company. 

The 100 Happy Days comedown

So, I did it. I posted, for 100 consecutive days, a photograph and a tweet about something that day that made me happy. And it was good. There were a lot of moments of Daniel being cute, some of the quieter moments in my day - like a cup of tea or a bath - and even things that made me laugh, like a notification on my computer at work one day telling me I can retire on 5th October 2049! (although I actually think that's too early!)

But what now? It's been two weeks since I stopped, and I've had a really rough two weeks. I tried to take Daniel to a toddler morning yesterday but they wouldn't let him in as he can't walk (I might add the girl at reception was really welcoming and let me go up and see the room to see if there was any way they could accommodate Daniel. There wasn't- apart from a ball pool, not walking meant he couldn't do anything) so I took him to the paddling pool, where other mums sat and chatted while their toddlers played. Daniel couldn't do anything without me, didn't want to sit in the water, and basically, I spent half an hour walking behind him holding his arms up so he could walk back and forward across the same metre square of the pool. He loved this so I tried to enjoy the moment for what it was, but the tears just rolled down my face as I watched these other kids. Then Daniel slipped and aspirated and I had a horrible few minutes trying to get him calm again and his chest as clear as possible. Everyone else just stared at me. No one said hi or tried to talk to Daniel. I came home, with a migraine, totally deflated. 

It's not foolproof, but when I was doing the 100 happy days project I saw more of the fun things and tried to find a photo to capture the moment. Now, this did mean some staging on some occasions to try and get Daniel to recreate a moment not yet captured on camera, but by and large they were moments that just happened. Yesterday as he laughed while doing the same thing he'd been doing for half an hour I probably would have snuck my camera phone out of my pocket to take a sneaky photo, to share in his enjoyment. But yesterday I just saw the differences, the challenges and even his moments of fun seemed to me to be a demonstration of the fact he has a learning disability. 

We keep coming back to Theordore Roosevelt's quote 'comparison is the thief of joy' and it is so wonderfully true. If we stayed in our own bubble at home, Daniel fills us with so much joy we wouldn't even know what we're missing out on. It's when we see other kids and realise that people have no idea what we're going through that our joy is stolen from us. It almost makes me want to be a recluse!

We are caught in a strange phase at present, baby classes are too simple for Daniel, but his lack of mobility means toddler activitIes are out. I keep looking for fun things to do on days without appointments but there is very, very little for him at present. Our season ticket at Streamvale will be well used this year! And in the meantime, when I'm having a tough day I'll have a happy moment, and not let our joy with our wonderful son be tarnished with comparisons.