Home Educating with Chronic Illness

As you will know, if you have seen this blog/ website before, or indeed my old ‘Little Bears’ website or the ‘Svengelska Hemskolan’ before it, that I home educated my 4 children from 1999 to 2018.

In the case of my eldest, who went to nursery (‘Dagis’, short for Daghem which translates as ‘Day Home’) when we lived in Stockholm, that was home education from age 4 to age 16 when they went into Sixth Form at the local High School, and in the case of my 2 youngest, from birth to age 14 when they went into school for their GCSEs, and in the case of my middle kid from birth to 18 when they went to Art College for Sixth Form (the two eldest who went straight into Sixth Form had to do catch-up GCSE Maths and English). We had hoped to manage some GCSEs or iGCSEs from home but for various reasons we didn’t do that.

What you may not know is that, from 2003 and again from 2012, we were battling with living with Chronic Illness. In my case, it took over ten years to get a diagnosis so for a very long time I didn’t really know what I was dealing with (I was eventually diagnosed with ME, Fibromyalgia and Histamine Intolerance, along with a long list of co-morbidities that come along under the ME and Fibro umbrellas. And then in the case of my son (Motor-biker, aka Tigger), the diagnosis of Type 1 Diabetes which was diagnosed as an emergency. Thankfully we caught it just in time as he was in severe Diabetic Keto-acidosis and had to spend 8 days in hospital. His younger brother (Baba Zonee) was also diagnosed this year, also in DKA, but very much less severe and, since he was already 18, only had to spend a single night in hospital. Again, we are supremely grateful for the NHS at every stage of diagnosis and care.

November is Diabetes Awareness Month and so I thought I would take this opportunity to raise awareness of the symptoms and warning signs of Type 1 (Autoimmune) Diabetes.

Essentially, you need to remember all the T’s: Tired, Toilet, Thinner and Thirsty. Another ‘T’ that is often left off these lists is ‘Tummy-ache’ which in the case of Motor-Biker, was his prominent symptom and which disappeared as soon as Insulin was administered.

The reality of home educating with Chronic Illness is of course that it is not easy. But it’s a kind of double-edged sword. From conversations I have had with other T1D parents and indeed with other parents with ME and/ or Fibromyalgia, I certainly get the impression that the struggle to get the children to school, and then the worry of the school mis-managing the condition in the case of T1D seems to be far more taxing that home educating was, even with those conditions.

Some advantages of Home Educating with Chronic Illness include:

1. You’re at home!
   It sounds obvious, but home is where all your kit is, and it’s likely to be a much more relaxed atmosphere which is automatically more conducive to learning.
   
2. Freedom to make your own Timetable
   Instead of forcing your illnesses to accommodate the school’s timetable, you can create a flexible timetable that accommodates the reality of the illness (some specifics relevant to Type 1 Diabetes include being able to eat, drink, go to the toilet and inject/ treat hypos wherever and whenever you need to. I can’t tell you how many stories of teachers and staff inappropriate restricting these activities because they don’t understand how T1D works!)
   
3. Less Pressure to Dress
   I wouldn’t want to give the impression that we were always sitting around in our pyjamas, but it did happen. If I was particularly unwell in the mornings, things like washing and getting dressed could be delayed without affecting educational activities (you’d be amazed how much you can achieve in pyjamas!)
   
4. Miss Less School
   Even though my illness completely debilitated me at times, we rarely if ever missed a day of ‘school’. Even when I couldn’t read aloud there was always something educational we could do.
   
5. Appointments in Term Time
   A related point is that, due to the freedom of home education, you are free to schedule appointments in term time, and even travelling time need not mean missed lessons, if you take advantage of ideas such as ‘Carschooling’ (more on that in another post, perhaps) but you can also make the education most of every opportunity – there’s no reason to prevent the children from learning and asking about their (or your) condition to expand their scientific knowledge, for example.

There are many, many more advantages to home education, and no doubt many that are specific to home educating with chronic illness that I haven’t included here. Suffice to say though that I am so glad that I didn’t accept the advice of those who suggested I should give up home educating when I got ill. It was a precious time together that I will always cherish.

So if you are teetering on the edge of the decision about whether or not to home educate while dealing with a chronic (or even acute and temporary) illness, I hope you’ll be encouraged to try home education.

Type1 Annual Review

On Friday we had a Paediatric Diabetes Clinic appointment and Annual Review. It should have been in January, to give you an idea of how shambolically incompetent our current healthcare providers are at the outset.

Ds12’s hba1c, the average measurement of blood sugar over the last three months, has risen since we have been on the pump from 7.3 to 8.3. We were told we weren’t doing well enough and that the pump probably wasn’t appropriate for us. I argued that we would do whatever it takes to keep it, since it has been utterly life-changing in a good way, to the same degree that suddenly having to inject insulin was life-changing in a bad way. The meeting was combative and left Ds distressed and in tears.

On Saturday morning I woke at 4am absolutely furious, because for 2 and a half years we have had the most appallingly poor and low level of care. I have wanted to transfer out of this health authority; the only reason we have stayed is that our pump of choice is not supported at any other local hospitals as far as we know.

A brief overview of the ‘care’ we have received so far:

• We were released from hospital without enough test strips to cover the weekend, and we were told by our PDSN to inject insulin without testing! On the advice of the national parents group, we went back to the hospital who were happy to supply us with extra strips.

• Our PDSN routinely ignores calls, texts and emails. He is currently on long-term medical leave, but did not bother to let us know.

• His inbox is supposedly going to the new additional PDSN but we didn’t hear from her either. In fact, she has been in the practice for over 6 months but we were not given her number until Friday. Either the calls are not being forwarded, or she also routinely ignores them, as we have not been able to get hold of her through his number, nor has she bothered to get back to us.

• After the initial week of visits, we were left completely to our own devices, and were left to cope for 6 months without any lantus (it turned out we were injecting it wrongly, but we had to discover that for ourselves). Controlling the blood sugar during that time involved 2-hourly bolus injections day and night. But we had no help, visits or advice from the PDSN. The Consultant, during this time, suggested it was due to insulin resistance and did nothing to investigate or help us.

• Despite the above, we managed at that time to keep the hba1c to 7.3. In fact we were originally refused a pump because our control was ‘too good’!!

Overall, I have been disgusted with the absolutely total lack of service, lack of contact, lack of help and lack of empathy.

It really isn’t acceptable for a child to leave the clinic in tears, angry, upset and distressed, frightened that he will have his pump (which makes life worth living as far as he is concerned) taken away.

We work bloody hard, and to my mind, we should be congratulated and our dedication should be acknowledged. Instead, the consultant is patronising and mocking. He dislikes our lifestyle and philosophy, the fact that we homeschool, and takes every opportunity to criticise. He told us on Friday that we should consider school now because Ds ‘obviously’ isn’t getting enough exercise (he has put on weight since the last appointment). I know, however, from conversations on the parents list and with other parents I know personally that the biggest complaint parents have is how badly the schools care for and manage their children’s blood sugar. Only last week we were told a story of a child who had refused to go on a school trip to Germany because she did not feel confident about their care. The only other 2 children with Diabetes who went on the trip ended up in hospital with Diabetic Keto-acidosis.

School would not be helpful in our case for a number of reasons that I won’t go into now, but suffice to say that the consultant’s tone added to Ds’ distress and fear. It was completely unwarranted and unhelpful.

It really makes my blood boil that they are threatening to take the pump away. If we had had an adequate level of help, I am sure that we would have had much better results.

Interestingly, on the way out, we met the family with whom we started the pump trial. They told us that they are having EXACTLY the same issues. Their hba1c has gone up, they are finding it hard to manage, and control is more elusive than it was on injections, but the benefits for the child are immeasurable and they don’t want to give it up. Needless to say, they also have the same issues with the PDSN.

There is no doubt that using a pump is much more complicated that injections. Leaving us on our own to figure it out is absolutely ridiculous. Threatening to punish us because we haven’t managed to figure it out on our own is unbelievable.

So at this point, depending on whether and where we can transfer and still keep our pump, we have every intention of transferring out of our current health authority. Hopefully, this pattern of incompetence, apathy and punitive, unhelpful attitude is not prevalent throughout the country.