I am worried. I’m worried most days really. Sometimes about something specific and sometimes just a general worrying about us all, how we’re coping and concern for our future.
Recently though my main area of worry has been constantly thinking that I’m not doing enough. I know, slightly crazy. After all like most parents I put in an on average 12-14 hour day before adding on any evening and night waking; and like most stay-at-home parents I do this without any breaks from the children, even toilet breaks are normally attempted with an audience. So why think I’m not doing enough?
Mostly this concerns Jacob and his therapy. He has a huge list of things he’s supposed to do daily, some of which should be done several times, but there are only so many hours in the day and so of course some of the time (all of the time) it doesn’t all get done. Every day we try to cover:
Speech Therapy – modelling new words and signs, speaking a particular way and using short meaningful sentences with 1-2 key words only.
Tactile stimulation therapy – Jacob has little bodily awareness and finds it hard to know where bits of his body are in relation to each other, this makes any co-ordination tasks difficult for him. He also doesn’t get enough sensation from things he touches, he can’t feel enough to understand an object and so often still puts things in his mouth.
Jacob enjoying some tactile therapy with playdough
Oral Tactile therapy – Jacob is also under-sensitive to sensation around his mouth.
Oral Motor Therapy – Jacob has problems with all motor control, and this contributes to his lack of speech which persists despite his understanding of language being at 2 year and 5 months level ( he’s 4 and 7 months). Most of us don’t appreciate the minute levels of muscle control and coordination needed to make speech sounds, Jacob just can’t get his muscles to do these things, so he has lots of therapy to try and help him.
Oral motor therapy with an owl hoot whistle (birds are VERY motivating!)
Physiotherapy – lots of movement practice as Jacob needs to practise and practise to develop skills that other children just “do”. He also has activities to promote good core posture and help his balance.
Hand strength – to try to help him strengthen his grip and promote control of his hands.
Sensory Therapy – lots of different activities throughout the day to help Jacob to manage his sensory experience of the world through touch, sound, movements, massage
Sensory therapy with a survival blanket
When I talk on-line to other parents of children with a disability about therapy I often feel bad. Many of them seem to really go for it on the therapy front, pull out all the stops, appear totally dedicated and committed. We don’t seem to have the time or the finances necessary to involve Jacob in all the different programmes we would like to. Are we letting him down? Will he fail to reach his potential because we haven’t invested enough in him? These thoughts make me feel slightly queasy.
I try really hard to get a balance: his SN preschool, normal day-to-day domestic tasks, time for his younger brother, ordinary family fun times and days out; and of course therapy. It’s a hard balancing act without spending the evening researching therapies, looking for accessible holiday activities; and then finding little within a reasonable travelling distance and little we can afford. When do you know that you’re doing enough? When do you know you’re doing everything you can to help your child? Or do you never know and constantly beat yourself up and feel guilty about it?
oneoffordinary 