School gate tears

Yesterday was a difficult day, I felt really, really sad and a bit angry; but, oddly, today I don’t at all. Today I feel tired and drained, it has been a roller-coaster two days. Two transition to school days.

Jacob is my first child and so this is my first  ‘starting school’ experience as a parent. Others tell me it is always hard, and many tell me that they blubbed like a baby whilst their child skipped off happily at the school gate. But at least they were there, at the school gate. I won’t be and it is breaking my heart.

When Jacob leaves for school in September I will say goodbye to him at the kitchen door. An escort will collect him and take him to school in a taxi. These people that I don’t yet know will collect him at around 8am and return him at 4pm. I won’t see his teachers or teaching assistants, they and his school environment won’t become familiar to me. That knowledge and experience that leads to trust and certainty won’t happen. This is because the nearest suitable school that can cater for Jacob’s needs is a 40 minute drive from our home. Whilst I’d love to take him myself, the situation is that even if the 160 minutes of driving along country roads didn’t do me in, it would definitely be too much for Jacob’s younger brother who’d be dragged along for the ride. Not only would he have all that time sat in the car but it would mean that he would have a very disrupted experience of going to playgroup and when he starts school it just wouldn’t work at all.

And if the idea of sending him off with complete strangers to spend the day with complete strangers isn’t enough, we need to add into that mix a child with complex needs, who is age 2 developmentally, and who has no speech. Put these together and you have a situation in which we will be very disconnected from his school experience. We will be completely reliant on his home/school book to know what he’s been doing each day and will just have to judge by his behaviour how happy and settled he is.

Yesterday I felt really upset. All of these things felt so wrong and I wondered if we were making a HUGE mistake, it was wrong for us to send him so far away to school and he would suffer because of it, we wouldn’t be involved and so we couldn’t protect him. I felt really, really worried that I no longer wanted to send him to that school even though there is no viable alternative. All of these worries made me feel really angry. I felt that I wouldn’t have this huge amount of worry and separation if it wasn’t for Jacob’s disability. I felt really angry that this was yet another thing that hammered it home, that we were different and that our parenting experience had to be more difficult and less enjoyable than it is for most people. Hell, it was even depriving us of the school gate experience.

A days reflection gave me time to really think about why I felt that way. I realised that my upset was nothing to do with Jacob, it wasn’t really to do with concerns for his well being; it was to do with me. All my upset was really because I will have to take a massive step back. Not only will he be off at school all day but I really won’t be very involved in his school life. For his whole life, his almost five years, I have been there for everything; involved in everything and the world expert on all things Jacob. His move to school is a massive step away from me, an even bigger step away from me than it would’ve been if he went to the school in our village. I needed to recognise that it was this separation upsetting me and not the school.

Once I had realised that these were my own feelings causing this level of worry and not something desperately horrible was going to happen to Jacob because.of the school choice we had made, today was easier, Jacob spent the morning at school and was fine, tired but happy. It reassured me. I know that it’s the right place for him and I have to force myself to keep remembering that. I wish I could move the school closer to us, it’s a shame it’s so far away from home but there y’go, can’t have everything and really it is most important that he gets the best start.  I’m just going to have to find a way to be as involved as I can be, I’ll probably the parent they all groan about –  after all you can’t stop a control freak mother.

If you have a similar schooling arrangement I’d really love to hear from you; especially what worked, what doesn’t and how you’ve managed to keep involved in your child’s learning. I’d especially like to hear reassurances that it’ll all be fine, I really really need those!

Just Never Enough

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

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!)

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

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?