Newbie introduction!

Hi everyone,

I am a single parent to my 7 year old daughter, she’s had the question mark over her about ASD since she was 3, being a girl she’s developed her own coping mechanisms over time which mask a lot of things but she still doesn’t sleep a full night. When she was 4 she was diagnosed with type 1 diabetes. Life now includes finger pricking her, giving her insulin, treating low blood sugars and getting up through the night to test her/treat her. She’s also recently become asthmatic, not the luckiest with her health. As well as all of this I’m at university trying to keep my head above water, I’m finding it all very stressful right now especially where her diabetes is concerned as the reality of a low blood sugar being left through the night is that she might just not wake up, I worry I’ll sleep through the alarms as I’m just so tired. I’ve no one to really look after her for any length of time as they need trained in how to look after her and family members are scared - can’t blame them, it scares me too. A social life doesn’t exist so I thought I’d join here to try and stop me feeling so lonely.

Sorry this ended up being a novel!

Hi T1dmum, welcome to the forum.

Are you getting any support from the hospital over the diabetes issues?
Are the University aware of the problems?
Keep studying, I have a brain damaged son and did a part time degree when he was about 8-12.
It was great having something completely different for me to think about.
Have you asked Social Services for a Needs Assessment for your child, and a Carers Assessment for you?
Are you claiming Disability Living Allowance, as she needs so much help?

My daughter in law’s sister has a 6 year old son just diagnosed with diabetes, they are having a roller coaster ride too. Is there a parents group available, either locally or online?

Thank you for your reply :slight_smile:

Yes, the hospital see her every 3 months but they are so busy that support is limited, did have to call them today though as her insulin pump broke and we had a bit of a panic!! Uni are aware and seem to be understanding but the real test will be when she gets ill and I’ve to be off for about a week at a time!
I do love uni, despite how stressful I can find it, have not ever spoken to SS nor has that ever been mentioned from anyone, she gets MCR for DLA due to the amount of care she can require and since im a student we don’t qualify for much else!

Diabetes really is a roller coaster the always has its moments, I am on a fair few groups for parents of t1 children which is nice because they just ‘get it’ when it comes to things that some people would find trivial (such as throwing away packaging before reading the carb content :laughing: )

MCR - Medium care rate?!

From what you describe,especially the need to be alert even at night, have you thought of applying for the highest rate?

Hi T1dmum, sorry to hear that you are struggling. My Mam was a single parent to me and my two sisters, and I know that it was really hard work for her.

How much support are you getting from her paediatrician regarding the diabetes? It may be worth writing down your concerns and speaking to them about it, and also asking them if there is any support available for you.

Regarding your daughter’s ASD, this is a field I have some knowledge in as I used to teach children with autism and / or severe learning difficulties. You could always ask your GP to refer you on to a children’s occupational therapist to assist with sleeping issues. A lot of the children with ASD who I taught also had this issue (these were children of your daughter’s age too). In the last school I taught at, we had an occupational therapist working in school 3 days per week and she was brilliant.

Did you know that many children with ASD have difficulties with something called proprioception? This is basically a sense we all have of being aware of the position and movement of our bodies. When this sense is not working as it should, you often find (specifically in children) that it causes fidgeting when sitting and poor sleep. We used to use spikey plastic ‘cushions’ on pupils’ chair for this reason as it helped them to feel where they were sat - it may not sound comfortable, but the ASD children with poor proprioception actually found these comfortable and were able to sit longer and concentrate more on tasks!

With regard to sleep, the suggestion was weighted blankets. As the name suggests, these are blankets which are weighted by tiny glass balls (so tiny they are almost sand-like). The weight is distributed evenly across the blanket by the use of sewn pockets. They come in a variety of weights and there are weight charts to help choose the correct weight for each individual. In using these, children feel more secure in bed (much like the use of the spikey cushions) and tend to sleep through the night much more. While you can purchase these blankets, you are much better to get them through occupational therapy for a couple of reasons. 1) They are experts in finding what is right for each person, so would be able to advise whether or not a weighted blanket would be advisable in your daughter’s case; and 2) Weighted blankets can run expensive, especially with children as they would require different weights of blanket as they grow.

It staggers me that these simple tools are not always recommended to parents of ASD children, and that many are never even referred to occupational therapy - especially those who attend mainstream schools rather than special schools. I once got chatting to a parent in the pharmacy of a local hospital (I was going through chemotherapy at the time and my medication always took the pharmacy over half an hour to prepare). Anyway, she had just been to see her son’s consultant, and the only thing he was doing regarding the poor sleep was prescribing a sleep medication. Naturally, this mother was not happy to be constantly ‘drugging’ her son for him to sleep - even getting him to take the medication was a battle in itself. When I asked her what occupational therapy had suggested, she looked at me as though I had 6 heads!! Nobody had ever suggested that a children’s occupational therapist could help her son! Personally, I was furious about this as I know just how valuable the parents of the children I taught found the advice they were given by our OT in school.

Unfortunately, sometimes parents need to fight to access the right services for their children, and that is neither right nor fair. It also doesn’t help when many parents simply do not know what services they should be asking for either.

With regard to your being a single parent, have you ever heard of the charity Gingerbread? They can offer lots of practical advice and support, and even have single parent groups up and down the country. They have been going for years - my Mam used to take us to events organised by them and found them really good (I’m the youngest, and I’m almost 45 - so that will give you an idea of how long they have been going lol). Simply search Google and you’ll find them easily - they may also be able to help find practical support from those trained to work with children who have medical needs, such as your daughter - it’s worth a try.

Good luck with it all, and try to make some time for just you - I know that can sound impossible, but it is important for your own well-being (if you became ill from the stress of caring, you wouldn’t be much use to your daughter, so try to find something that is just for you.).

This is a really interesting post, my son with LD has never had this sort of advice, and he’s 40!

I’ve met loads of parents over my career who have been so overwhelmed by the system, and have had no idea of where or what kind of support they should be looking for. It’s high time that all of the support available for both children and their parents is made clear at the time of diagnosis, allowing you to make choices based upon having all of the information at hand. Parents, such as yourself, face a difficult enough journey without needing to become experts in searching for the help and support that is yours (and your child’s) by right!

When I made the move from teaching in primary schools to teaching in special schools, my own learning curve was massive. Not all special schools work in the same way either, and it wasn’t until I began working at my last school that I learned about the level of support occupational therapists could offer.

There really should be more specialist co-ordinators as a point of contact for parents and carers, enabling everyone to access what is right for them. Can’t see it happening with all of the financial difficulties most councils and NHS Trusts are facing though :cry:

I agree. I had no idea how difficult it was to access specialist support. It baffles me however.