I read a post the other day, a simple, factual piece about the reality of parenting a child with complex needs, and it struck me, again, how much less I would know if it weren’t for my Sam.
I can use a great deal of what I have learned over the last sixteen years together in my professional life. Reading behaviour, the tiny expressions that flit across the face of a child, gives me insight into how they feel without them having to utter a word. I have learned when to press and when to back off because someone has had enough, as well as honed my ability to see the small steps in learning and look for the next.
Some of the things I learned though, the things I wouldn’t have learned if he wasn’t there, are faded. They slip into the recesses of my busy mind, and I fall into my habitual state of believing that I don’t know very much about anything really; that I am unqualified. Now that my family has slipped into the comfortable groove of routine, with only occasional trips into worry, it’s easy to forget the road we have travelled, which, to be honest, has been long and, certainly in the early days, arduous.
So, in order to avoid this post becoming a country mile (something it is already threatening to be), I am going to get to the point, and tell you some of things I learned about food and feeding that, you never know, might help someone, should I ever figure out how to publicise correctly.
It starts early.
After you have given birth to baby, the very next thing, once you have got over the relief of getting it out and surviving to tell the tale, is to feed it. There is immense pressure to get started. Now, a lot of the time, this goes swimmingly. If you have made up your mind before the day how you are going to feed your baby and, especially if you are breastfeeding, you get a baby who seems to know what to do, Bob is indeed your uncle.
If, however, as happens to many, you don’t, and you get one that refuses to stick to the plan, you have instantly introduced a level of anxiety that is hard to overcome. Not all babies breastfeed easily, special needs or none. If you are determined to do it you are going to have to dig down into more physical reserves than you thought you had – and you need the support of your partner.
It is entirely bound up with your emotions.
Feeding your baby, and keeping it alive while doing so is a kind of fundamental act, and the inability to feed them can and does impact on your sense of self. When you see someone else doing it differently, it can feel like an attack – even years down the line, when grandchildren come to call.
Breastfeeding a baby with Down’s syndrome is possible. Challenging, but possible. I know, because I did it.
Everyone has an opinion.
Everyone. Every single person in the entire universe has an opinion on it. It’s almost as if feeding your baby is a public, rather than private act. When your child has a problem with eating – of whatever sort – and you sit at the table with them and a gathering, everyone seems to think that it helps for them to comment on it or attempt to get involved, uninvited. It doesn’t. It just magnifies it and makes them, and you, feel worse. Funnily enough, Sam made his first forays into feeding himself ‘proper’ food when we were out at a pub lunch, too busy chatting and watching the world go by to notice what he was doing. Once he got going, there was no stopping the boy.
They are ready for solid food at different times.
Is the advice still six months? Or is it four, or three? Or even two? It’s difficult, especially when it is your first baby, to know what to do. Advice and guidance is plentiful, and sometimes contradictory, and that’s before the family gets involved and start making suggestions you aren’t sure are jokes.
For what it’s worth, three babies down the line, each different in their needs, the only thing I feel confident in telling you is that by the time they are reaching out, grabbing your dinner off your plate and stuffing it in their tiny mouths you can pretty much rest assured that they are ready for solid food.
Not every baby finds solid food an easy thing.
Ok, so this is where the specialist knowledge and experience kicks in. Down’s syndrome comes along with low muscle tone (I think I am right in making that blanket observation – I expect there are some babies who do not, so if that’s you or yours, apologies), and this includes the muscles of the mouth. If your baby is bottle fed, they won’t necessarily have exercised those muscles enough to make manipulating solid food and attempting to chew it easy. And that’s before you get to the delayed appearance of teeth.
The smoothness of jarred food can be a great way to start, but the next stage ones can be tricky, as the lumps tend to come along in the shape of centimetre cubes. Typical babies find this tricky too. Getting food to the consistency that your baby can handle is a process of trial and error, and I can recommend a hand blender in support of this pursuit.
If your baby/toddler/young person is having difficulty with solid food, and chewing is a problem, look out for melt-in-the-mouth foods that they can put in and mush away to their little heart’s content, without having to worry. Skips are quite good, as are Quavers or banana.
Rescuing a choking baby is frightening.
It happens. It’s a good idea, when you are starting out with solid food, to find out what to do if you find yourself in this position. If you do, it is important that you act quickly.
Some babies and children have difficulty with liquids too.
Controlling the flow of very runny fluids can be difficult for some young children – despite what you might think, based on the idea that they start off on a liquid-only diet. Drinking water from a cup/beaker is an entirely different experience and skill.
You can help them get the hang of it by slowing down the flow in a couple of ways. You can hit the shops and invest in every single beaker/sippy cup there is (this is a lot of fun and can also be extended to sandwich and snack boxes with slidy lids that encourage fine motor control) and/or (once you have your sippy cup of choice) you can thicken the fluid a bit.
There are a few ways you can do this; you can get thickeners from the doctor, you can use jelly or yoghurt or you can go the fruit smoothie way which also has the added benefit of keeping everyone nice and regular. Drinking straws are great fun and don’t get blocked by the inevitable chunks of fruit; I found some lids with a hole for the straw. A brilliant investment that saved me a fortune in carpets.
It is important to keep going with fluids as constipation is very painful.
Even if your child is stuck on purées you can still offer finger food at meal times.
Sharing meal times and enjoying food together is kind of central, culturally speaking, to the family. Eating at a table, together, is the focus for so much learning that goes beyond food and feeding.
I have to admit that I do not especially enjoy messy play at home. It’s just too much…mess. So, food and feeding became a sensory cornucopia. I even have the odd photo hanging around somewhere of baby Sam covered from head to toe in some sort of foodstuff or other. And then there is the art of conversation, of taking turns, of serving each other and using good manners. These things are learned at the table, as part of the meal, whether you are eating or not.
They feel as emotional about it as we do
Choking is frightening. Being unable to control a drink in your mouth is alarming. There are many early experiences that can mean that a child or young person develops a fear where food is concerned. Allaying that fear means that the adults in their lives need to control theirs. Whether this means going easy on the baby wipes the moment their fingers get a little bit sticky or reigning in on the desire to leap to their side the moment they put something that has caused a problem before anywhere near their lips, that is what you need to do. Being afraid of food can affect a million other aspects of the life of a child, including their ability to get on well at school.
As with so much to do with learning, putting our own feelings to one side in order to benefit their progress is the name of the game, so that everyone can get to where we want them to be.