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!


The Fear

All parents worry about their children I guess. Worries for their future, worries about  something bad happening to them. I think there is a special kind of worrying though that’s reserved just for parents of children with disabilities. I call it The Fear. It feels like it needs capital letters. Some times The Fear creeps up on you during the dark hours and leaves you hamstering in bed, your mind turning over and over with every kind of possible worry;

hamstering brain

but worse is when The Fear gets you in daylight hours, when you’re out in public and not expecting The Fear to be lurking round the next corner, ready to pounce.

My son Jacob is a SWAN , this stands for Syndrome Without a Name, he has a complex disability but no underlying cause has been found. I used to think that there was a special kind of worrying associated with having a child with no diagnosis. No diagnosis meant no idea what to expect, no monitoring and check ups could take place, any kind of problem would just “happen”. Then I realised through chatting to another parent whose child has a chromosome disorder that she too knew The Fear. They had a label, but it meant that they also had a whole list of  things that could possibly occur; but they didn’t know if, or when, they might. She described the day that she received a leaflet about her child’s diagnosis, it wasn’t long after she had given birth, and this leaflet gave an extensive list of possible scenarios with the proviso that some children are mildly affected and some seriously. Not knowing where your child might figure on this spectrum she likened it to arriving in the post natal ward and being hand a leaflet giving the statistical probability of your child becoming a drug addict, a criminal or being involved in a serious accident at some point in their later life. A whole list of things for The Fear to feed on.

This wasn’t the post I was planning on writing, but today The Fear got me. Not my normal Fear either. My normal Fear lurks in the dark hours when I’m trying to sleep. It is then that I lie awake and worry about Jacob’s future. Will he ever speak? How much independence will he be able to have? And then, guiltily, will I ever have a life that doesn’t involve parenting a toddler?

We’re lucky, with all Jacob’s complexity so far he has been in pretty good health and through getting to know so many other parents of children with disabilities I know that this is something to be immensely grateful for. So I was not expecting to arrive at his nursery today and be told that Jacob had experienced what they described as an absence. A significant period of time in which they had been unable to gain his attention, in which he had stared into space and then suddenly snapped out of it, rubbing his eyes. Of course, they had to tell me, I understand that; but how can one little sentence turn an ordinary day into one where your heart simultaneously rises into your mouth and your stomach sinks to the bottom of your feet? I left with Jacob and outside the door, it was waiting for me. The Fear. I had to stop, I couldn’t move or speak and my throat felt as if it was closing up, tears came and I thought “Oh God, I’m crying outside a school, how lame.” but I couldn’t stop myself. Even typing now I find it hard to see what I’m writing. It was That Fear. The big one. The one that whispers to your mind “Something dreadful is going to happen to your baby and you’re powerless. You can’t keep him safe.”

Since then, I’ve watched him even more like a hawk than normal. He seems fine and I haven’t noticed him absent even for a couple of seconds. So I’m hoping and crossing everything that it doesn’t happen again. Hoping and trying to ignore the new Big Fear.