Transition to Primary School for Those with a Rare Disease

The time has come for another deep-seated worry and anxiety to take over my life.  My daughter is transitioning to primary school and she has a rare disease.

I am currently sitting in the Meeting Room at the primary school as I have to remain on the premises because the rare disease training provided by Alder Hey was only completed 3 days ago, it was online, the teacher is nervous, I am nervous and we are not yet sure how this is going to work. I am attempting to do the endless amount of work that I have brought with me, under the allusion that I will be able to get loads done in this rare free time… What was I thinking?  My daughter is in the classroom next door with a teacher that knows absolutely nothing about the life-threatening rare disease that my daughter has, other than what I have told her in a few meetings and via emails and I am expected to believe that everything will be ok.  It will be ok, because if it isn’t, I will make it ok, but I am sitting here looking at the CGM readings on my phone and expecting a sudden drop and the alarm to sound and I will have to go in to the classroom and administer emergency intervention.  She will fall over and this will upset her insulin levels.  She will be so upset and stressed that it will upset her insulin levels.  She won’t be able to have a snack and this will definitely upset her insulin levels and sound her CGM alarm.  She is going to knock her leg and her sensor will come away and then I won’t get readings on my phone and I will have to take her home early.  When we get home, she will then be so upset, out of her precise and specific routine that we manage each day that this will upset her insulin levels and I will have to manage that for the rest of the day. Of course, none of this is happening right now and fingers crossed it won’t, but it could and ‘could’ is incredibly scary.

My work that is sitting next to me that consists of lesson planning, marking, feedback and parent and carer communication is underneath my phone that is on with the CGM monitor app open in order for me to stare at the readings in anticipation of disaster.  I am now writing this blog instead because I am trying to process everything and ease the anxiety in my mind, relax my breathing and slow my heart rate.

As a parent of a child with a rare disease, this is what every new situation brings for me and results in me and the family having to navigate an incredibly lonely, isolating and unyielding journey that is filled with endless emotional highs and lows. All of this has transformed my daily life and that of my family - my husband and my 4 other children (and even the dog).   Each of these new situations that presents itself comes with its own set of issues and right now, transitioning to primary school is taking me right out of my uncomfortable comfort zone.

I have been in close contact with the key people that will be involved with my daughter - the SENDCO, Headteacher, Head of Lower School, EYFS Lead and the class teacher.  That seems like a lot of people, but these are the people that will be making decisions about the care of my daughter and the care and medical intervention that she receives in school and it has taken a lot of arranging of meetings and training, but it is all necessary.  I need to make sure that we are all in agreement with everything that is put in place, every one of these staff members has an understanding of my daughter’s rare disease and the impact that this will have on her physically, mentally and emotionally and the ultimate impact of her daily life in school and her education.

If I could give just one piece of advice to other parents and carers in our situation, it would be to talk to people.  You can never talk to too many people - identify the key people that you need to open communication with and do it.  Do it directly, don’t go through someone else as with rare diseases unfortunately people add their own understanding or interpretations on to their conversations with other people and this is where things have the potential to go drastically wrong.  Be direct, be clear and be confident.  You know what you are doing and you want them to know what they are doing and you can support each other whilst doing this.

I am normal, my family is normal, my daughter is normal, just a different kind of normal and I need to remember this.  This primary school transition will be different to the other students and that is ok and her primary school journey will be different and that is ok too.

I had better go and collect my daughter and see if she desperately needs my urgent expert medical intervention, or if in fact everything is ok and our kind of new normal.