There’s a little tingle in the air, a sense of anticipation. Anxieties are running a little higher, excitement is too. It may not all be good, or easy, or straightforward. It may not all be what we want, but finally after weeks and weeks of waiting, there’s a feeling that soon we will be on the move once more.
Today marks the beginning of the end of the summer holiday. That vast expanse of time to fill, thanks to cultural and agricultural traditions which no longer bear any relevance to our lives. For stay at home parents like myself it’s one thing to have the children home and entertain and cook and clean and somehow keep them from tearing each other apart. For those who work I can only imagine the nightmare of planning that must go into these 6 long weeks.
In a family of children with special needs, the summer holiday can be a terrifying prospect. None of my children can attend run of the mill summer camps or days out. Any outing requires meticulous planning and most often is cut short due to the range of difficulties the three of them experience: one outing may be ideal for little man, but be overwhelming for Princess; another may be perfect for Eldest who desperately needs intense physical exertion, but wear Little Man out before we’ve even started. A swim was shortened because he became so cold that we simply could not stay. An outing to the ice rink was too much for Sweet Girl as she contended with noise, movement and failure and began to shut down.
Eldest Zack has Asperger’s syndrome. His tendency towards obsession is at best rather endearing and quirky, and allows him to delve into certain subjects with remarkably perseverance. It does, however, take over every single aspect of his (and our) life. This summer (indeed, this one has been going strong since Easter), the obsession is Minecraft. Don’t get me wrong, I see a lot of positive aspects of this online building game. Zack has constructed remarkable structures and demonstrates once more that his spatial perception is creepy good! But he has spent the last week downloading “mods” and talking of nothing else. His sense of time is extremely limited and convincing him to come away from the laptop always involves a major battle of wills.
So as time goes by, I begin to hate Minecraft!! Which he in turns interprets as me hating him… long talks ensue to fix that particularly little problem. And we find ourselves in a very difficult position trying to allow him to enjoy his holiday whilst not disappearing into a parallel world. As things stand, with his return to school tomorrow, we have reached that delicate time when a “reboot” is necessary. He has allowed basics such as personal hygiene to slip somewhat, and anything outside his laptop causes difficulties and outbursts of temper. How fortunate we are to have the support of such an amazing school which will effect the “reboot” so well. It does leave me a little sad to think that if the holiday were two weeks shorter, we would not have arrived at this point, and he would be a great deal happier.
Sweet Girl Kesia has had a good holiday and has really benefited from the peace and calm of the last three weeks. She is now medicated for the anxiety she experiences as part of her Asperger’s syndrome and we hope (oh my giddy aunt if you could see the crossed fingers and toes in this house!!) that this medication will help her. However, as the time for school to start approaches, the small effect of the medication that we could see have vanished – anxiety is a powerful thing. She very badly wants to go to school, but simply cannot manage the environment that surrounds her in our lovely but mainstream school. All our hopes are now pinned on tomorrow’s meeting to address how best to “phase her back in” to this new school year.
Little Man Tom… Oh me oh my. The facts are abundantly clear that he needs a different school. He simply cannot keep up, nor does he have the social peer group that would give him a chance of coping with the academic delay he has. The Authorities see it differently. The Authorities, I cannot help but feel, are far more interested in their short term budgets than the welfare of the kids they have in their care. Which actually is a fair point. Special schools cost a lot of money. What I wish with all my heart is that these same people would look at the cost in the long term. Because my children, all of them, have the potential to be valuable and valued members of society. With the right skills and education, they can and will live independently, get and keep jobs, and generally make themselves useful.
But… let them down now, and each of them in their own different ways could easily end up utterly dependent on their family and the state.
Overall, a special school now will cost less. Far less.
And that’s not counting the emotional cost of a family in disarray due to children in free fall.
I have spent the last six weeks waiting. Trying to keep all these little people happy in their holiday, knowing that there was nothing, absolutely nothing that could be done about any of these situations until September.
September is arriving!!! Battle armour on, smile in place (smiles tend to achieve more than screams), determined stance at the ready. Phone is working, computer and typing fingers too. I have some really special people with me and behind me, so here’s hoping!!!
On that note, I have to say an especially huge thank you to Mark Brown from Special Help 4 Special Needs. Known by many as “the child whisperer”, Mark has help me with all three of my sweethearts, and I would recommend him to anyone whose special needs child needs help. Not only does he have a phenomenal affinity with these kids, but his experience of the “system” lead him to give sensible and practical help when needed.
In the meantime, Eldest Zack is packed and ready to go back to school tomorrow! Swett Girl Kesia and Little Man Tom are far more in Limbo, but work starts tomorrow to help them.
I feel good. And extremely glad to have got to the other end of this ridiculous, 6 week farming time. Maybe one day we will have the courage to question the validity of doing something just because it’s always been done that way. That, or I have to send my kids out to farms all summer to be useful!!!