‘How will that impact on his sister?’, I asked at yet another meeting.
‘We are here to talk about Isaac’, was the reply.
This is the reality of life with more than one child.
In my case both my children have additional support needs, but even if my daughter was ‘typical’ developing she should still be considered when it comes to matters of her brother. The impact on her is just as big, and at times even bigger, than on her brother.
It is all too easy to say, for example, that we have to let one scream, harm himself and cry for hours on end as he tries to push boundaries and test limits. But how does that affect his sister? Or us? Would professionals be able to hear a sibling, or their own child, someone they love dearly, cry in distress for hours and not be effected?
I wish therapists would stop missing the bigger picture.
‘Sorry, we are not able to increase the allocation of supplies despite medical support.’
Another disappointing call updating us on an ongoing challenge we have been having.
People in an office, looking at limited facts on a screen, making a decision based on only the details of that one child with no thought to how this will affect an entire family, and beyond. My son is a number to them. To me he is a precious individual who deserves dignity, respect and to have his basic needs met.
I wish services would stop missing the bigger picture.
A recent visit to a medical practitioner with my children left me with some ‘projects’ to work on over the summer. The only problem is that both children have ‘projects’ that, while increasing their development and skills and helping their medical conditions, they will also both require huge amounts of time and support from me. I also need to be very mindful of the fact summer should be a time of fun, and making memories, and that my children will grow all too quickly. It is very easy for doctors and nurses to suggest health care plans, or developmental milestones to try to achieve, or even to give timetables to implement programmes of therapies. I smile, and leave with yet more literature while thinking all the time, ‘what about my other child?’. My time is not exclusive to one child, even if their needs would call for this, and I also have a house to run and a husband who needs me too. Seven weeks might seem a huge chunk of time to medical trained professionals but it can pass in the blink of an eye when I take into consideration hospital appointments, days out, quality time and household duties.
I wish professionals would stop missing the bigger picture.
End of term is bringing some challenges too, not least the fact my twins attend different schools with very different calendars of activities. The pressure to attend two different sports days, end of term assemblies and prize givings, services and summer fairs can seen rather overwhelming. How do you choose when dates clash? How do you fit in homework, or juggle after school activities with the extra needs that having a disabled child brings. A few times recently I have sent my daughter to school without her reading book, or her packed lunch, or her PE kit. And when school calls I am expected to leave everything to get these things to her, even in the midst of caring duties to her brother. Sometimes I am miles away in meetings, driving or simply changing a nappy. Each school sees one child. And they forget the family is much bigger than that one child.
I wish schools would stop missing the bigger picture.
It is easy for us all to see one thing in isolation: a child crying, a struggling mum, someone sitting alone in a cafe looking out the window. It is all too easy to hear noise from the house next door and come to the wrong conclusion, or berate someone for not keeping their garden tidy when the weather seems nice. Without realising we can be quick to judge or form an opinion, even when we have no knowledge of the background, or circumstances of someone else.
I have lost count the amount of comments I have had on my children because they ‘look fine’ or because they won’t reply to them or give eye contact. People are very quick to comment on the fact my children still use a dummy for bed, or wear nappies or carry a comfort cloth around. There is more going on than you think.
Let’s not be guilty of missing the bigger picture.