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. 

The foolproof way to simplify your life

We've all seen them. Blog entries about them. Magazine articles on them. Entire books are built around them. They promise so much. What am I talking about? Lists that will 'solve' your problems.

5 ways to be happy

8 ways to get your toddler to stop throwing food

10 ways to promote your infographic (I did not make that up)

15 ways to prevent animal cruelty

25 healthy snacks 

And my personal favourite... 50 ways to simplify your life. A real list. 50, seriously 50, ways to make your life less complicated. That sounds like a whole load of effort and things to do to just make life simpler! 

Anyway, I read these lists and sometimes pick up some great little tips, but more often than not they overwhelm me. It's too much information, too much expectation and just makes me feel inadequate as a mother, or a woman, or in running a house. I try so hard, but there are days when getting out of bed, and getting my toddler dressed feels like an achievement as it's about all the energy I can muster. I think we all just need to cut ourselves some slack. I read a lot of blogs (mostly Americans who seem to be able to make a career from blogging) and people have it all sorted: they have carb free, gluten free, sugar free diets; they get up an hour earlier than their family to pray just like the woman in Proverbs 31; a household chore list than never runs behind schedule; zero clutter; a fit and healthy body; and 6 homeschooled, happy children. 

I'm going to do a series on real life, in a three bed semi (yes, Americans and their massive houses may have more cleaning but clutter isn't really a problem when you've a basement, ten bedrooms and four acres of garden) with a busy career (albeit part time hours) and a child whose medical appointments in 20 months exceed mine for a lifetime. That's to come. For now, I'm just going to take comfort from the fact I have a roof over my head, enough money to enjoy life, and haven't appeared yet on 'The hoarder who lives next door and died under a seven foot high pile of newspapers from 1994'...

Choosing positivity

Can you choose to be happy? I've noticed a few friends doing #100happydays on Facebook and Twitter at present. The idea is that each day, for one hundred days, you upload a photo of something that made you happy that day. What has surprised me is the statistic on the 100happydays website that 71% of people will not complete the challenge citing time as the main reason. People are too busy to notice one small thing each day? Once I thought about it though, I wondered if it's not just the time but that so many people have an air of negativity surrounding them. Do people just find it too difficult to be happy? 

Everyday I read Facebook updates and WhatsApp messages and listen to conversations centred around complaints about young children.  I remember as a child my mum saying that so many people wish their children onto the next stage or wish they stayed at an earlier stage, never enjoying the stage they were at. She was right. Friends with young babies? Constant complaints about them feeding all the time, not sleeping at night, dirty nappies. That's life with young babies, but it's such a precious time when a baby just needs nurtured and cared for by the people who made them through their love. Beautiful. Why would you wish those moments away? Then people wishing their toddlers were more independent and less inquisitive. Is it really a nuisance having to help them with daily tasks, answer their many questions, and stop every few minutes on a walk to look at a bug on the footpath? No, they are discovering the world for the first time and you're getting to share this with them and teach them.  I am sure that someday these same people will look back wistfully and wish their grumpy teenager was a toddler again. You get the picture.

I am generally positive but have decided to embrace the 100happydays challenge for a few reasons:

1. My life is blessed. I have a wonderful husband, and incredible and inspirational son. Colin and I have well paid secure jobs, my employers have been so flexible with Daniel's extra needs and we have a lovely home with family close by. I also eat lovely food, drink beautiful wines, listen to inspirational and uplifting music and look at stunning scenery. Sometimes we forget the great things we have in our day to day because we don't think about them. 

2. I need to get away from the slow drip drip of negativity around me - I'm largely avoiding Facebook these days as it's full of the two extremes of smug superiority and moaning. It's the winter, I'm largely housebound with Daniel and negativity pulls me down. I don't need it.

3. I'm getting competitive with the moaners. Have you ever noticed that those who moan most are those who have little to moan about? Of my 350 or so friends on Facebook, one lost her daughter in January, another few have children who have had major open heart surgery in the last year, a few have children with serious health problems (on top of my new friends in the Down Syndrome community) and I never see any of them complain. In fact they're the ones most likely to post the positive (non-smug) updates. So I find myself reacting to the moaners by thinking "You've so little to moan about. My son has Down Syndrome. He's 17 months and can't stand. He's on thickened liquids. He can't hold his cup to drink from. He can't speak. He has medical appointments every week... My husband has Crohns. He has had major surgeries, hospital stays and we've had to come home from holiday early as he was so ill... In the first five years of my marriage I've been a carer to my husband and to my son." I'm right of course. That is the hand life has dealt me BUT I don't actually think of my life as difficult. See point one. My life is blessed! It's that by dwelling on comments made by others and comparing my situation to their's, I become one of the moaners, even if it is only in my head!

4. Being happy is good for you. By focusing on positive things in your life your health actually improves and of course you'll also be a nicer person to spend time with! Why wouldn't we spare a minute each day to improve our lives? I've also read that statistic about once you do something for 26 days consecutively, it becomes habit, so by doing this challenge, I'll be doing something good for me in the long term, not just for the 100 days. 

I think you can choose to be positive and happy in life. Let's see how I feel about that in 100 days time!

#NJW100hd