How do you prepare yourself for new diagnoses?

[Laffydaffy]

Posting here for advice.

One of our DC has a few diagnoses that are multiplying slowly. Just when there is a lull and we have adjusted as a family, a new one appears. Every two years - started with vision impairment, low muscle tone, ADHD, chronic lung disease, autism, heart problems, and now a potential diagnosis of a long-term neuro disease (? degenerative). Genetics are unclear - waiting for further testing.

At the moment, nothing is life-limiting, which means DS lives a relatively normal life. Goes to regular school with adjustments for his vision, and does well. This new potential diagnosis, however, is the most serious so far. It will be a relief to have it, because at least we will know. What I need help with is, for those who have experienced similar, how do you prepare yourselves and your family for what is coming? Can you prepare? Do you have a support group or family members around? Is there something you do to help with the ruminating and stress, like a hobby?

I’m so sorry that your DC and you are going through this terrible experience, @Laffydaffy
I’m the patient in our house & have half a dozen comorbidities which have come to
light over about 15 years.
I think only attitude to take is the “at least we know” one, so you can start any treatment & to understand the condition & hopefully gain some
control over it. One day at a time, and all that.
The worst things that I do are to dwell on it all & then to eat my feelings - neither have helped but I sometimes still find myself doing it!
A simple, absorbing hobby is definitely a good idea; I colour & read.
I wish you and your family all the best as you go through these next stages together 🌺

My DS2 gradually acquired diagnoses like that... Starting with Hypotonia , visual delays (and lousy eyesight... Glasses by 6 months old) then developmental delays, speech delay, then learning disabilities. Autism wasn't added for a couple more years. By the time he was also diagnosed with a life long serious autoimmune condition too it was just a relief to know what it was and how it could be helped.

Slightly different in that by then he was already in special school and we had our heads round to the reality that he was disabled, but life kept adding extras! We didn't prepare anyone... To be honest as he got older HIS privacy about his conditions matter more than anyone else's needs to know or worry... Family can mean well but may add stress to your stress... We keep things on a 'need to know ' basis.
Support groups... Proceed with caution. I joined a few in the early days and they tend towards gloom and doom (and in some there is a lot of 'disability one-upmanship with people competing to be the most ill ... Bizarre !) Having said that, I joined a generic special needs support group when DS2 was 3, and have made amazing friends, and we are still friends 20 years later and meet up once a year to camp together with our now adult wonky offspring :)
You kind of learn to deal with one thing at a time, it's all you can do x

Thank-you so very much for your responses. We know that we need to slowly keep going, and we will be glad to finally know what is causing the neuro problems.

The thing I think I am struggling with is that we know he is disabled (eyes and Adhd/autism) but not hugely so, if that makes some sense. We have all coped and to some extent he has thrived, even when so many people have judged his abilities based on his diagnoses and not on what he can do and is capable of. Now that he is facing a different disability in an area I have no experience with, I think a general support-group is a good idea. Are in-person groups better than online?

Re groups, I guess it depends on many factors including how specific they would be to the conditions (if they’re rare) & then logistics such as where and when etc etc. Perhaps more generic groups could help with some aspects of life, general coping, sources of support and so on?
I prefer on line support because of the flexibility & privacy aspects plus as I’m quite “rare” the population of us is spread far and wide - fb groups are literally spread across the world.
Fully agree with @Sonolanonare the competitive disability & oneupmanship that can develop in some groups, you just have to separate yourself from it really. Despite the negatives I think I prefer the virtual groups in all honesty.

Please don’t worry about this being a possible new area for you to be suddenly pushed into. We’re all in that boat at the start - you were initially & as you say there’s some thriving going on now!
You really can do this 🌺

I've joined online support groups for my both my kids and my own health issues. They have helped massively to ask a question and find out what works for others. Means I don't have to be creative to find a solution to a problem but try out what works for others that could work in our family set up. Also online means things don't need to be too personal, if that makes sense. But knowing others understand, a bit like this forum, is so good to have. I've since made a mum friend and we plan to meet with the kids as two of them share a visible difference that is almost the same. I think it is good for kids to know others with similar things, they can relate. The online aspect meant me and this other mum have vetted each other so I feel like I am not meeting up with a complete weirdo or someone who is so doom and gloom because I can't handle that. I'm very 'well now we know, let's use that info to help us' and keeping a positive attitude (most of the time!).

Nothing ever prepares me when I know a new diagnosis is coming, I can try but it will still feel like someone’s just pulled the rug from under my feet.

Aside from heart problems and adhd your child sounds similar to one of mine. I am in a lot of support groups linked to the diagnosis’s we’ve had.

Was your child born early? One of the biggest support groups we have is a preemie group and there are people in it whose children have now grown up and moved out etc. From all walks of life and different medical backgrounds ❤️

Thanks again for all of your help. I will try the online support groups first.

DS was not premature, but I would imagine that there are plenty of groups for his various problems. Actually, once we sort out his genetic testing, I think we would be more likely to find children with similar patterns of illnesses. I will start looking today.

Another challenge is that of doctors not taking his issues seriously until they become quite serious. We had a hospital we used to frequent for his lungs, which worked well, because they had his history and knew how he typically presented and deteriorated, as did his paed. We have moved and had to find new doctors and hospitals and I have found it so difficult advocating for him while the doctors dismiss his symptoms.

I read an article recently about a disabled person who had to retrain herself thinking that she was taking up too much space with her needs. Sometimes that is how I feel, that I need to minimise DS's problems in order for the doctors to successfully treat at least a few of his conditions.

We were transferred between hospitals recently to a neuro ward, and I asked on admission for a salbutamol inhaler, because I had left it at the other hospital and DS's lungs were unstable. I asked three times the first day and the second day and the 3rd day, both the nursing staff and doctors. They kept saying sure but we never got one and I realised I didn't want to kick up a fuss because we were new, they didn't know him and I didn't want them prejudiced against him or me. So we practiced breathing control as much as he could tolerate it and I ended up discharging early. They also refused the referring hospital's cardio consult request. Now I have to get the courage to call again for another admission in a different hospital so we can continue the testing.

Sorry, ladies, for the vent. Thanks again for your help.