How to get head around the fact child may have SEN

[55tincan]

Hi just finding myself in a difficult place at the moment. My DS has a brain issue m, first identified in pregnancy. He is now 10 weeks and everything seems to be going well although he does need an op to allievate the pressure in his brain. Children with his condition vary from very disabled to totally "normal". I'm struggling to get my head around the spectrum of outcomes and would just love more certainty than wait and see. Obviously we can't magic into the future but wondered if anyone else had encountered the same kind of thing and how did you get your head around it. I'm finding it especially tricky as they seem like a totally normal baby and has hit all required milestones so far.

My DD had a HIE injury at birth and was in hospital for quite a while. We had the same as you - hit all milestones and her MRI was clear but we were warned that even with a normal MRI there can be issues further down the line. She's coming up to 2 now and is nearly due her last developmental assessment, and it's only in the last 6 months that I've become fairly confident she's fine.

The most helpful thing I did was join a Facebook group for my child's condition and there was really good advice and support there. Just hearing other people's stories helped. Someone said try to enjoy your baby as they are, a day at a time. Don't spoil a good today by worrying about what might come years down the line. It's easier said than done but I got better at living in the moment, trying not to think too far ahead. Lockdown made it harder too, before lockdown I tried to get out to a group or a cafe or to see family/friends most days to take my mind off things and also so I could list something good that had happened that day. Celebrate every milestone, there are some babies in my Facebook group who have very profound disabilities and when my child smiled, rolled, sat up etc I realised that shouldn't be taken for granted.

Thank you for your thoughtful response. You are right I should focus on the here and now. Lockdown has made this harder.

Sometimes I find that medical professionals have made a bit of an assumption that my DS will be on the severe end of the spectrum but I just find it hard when I look at my baby and what they've done so far. Only time will tell. I suppose it is positive they are looking at every aspect of his development.

I think healthcare professionals err on the side of caution, they want to avoid false hope at all costs. When it's brain-related, they just don't know. There are babies who have terrible MRIs who go on to do really well, and babies whose MRIs look okay who go on to have lots of issues. So I wouldn't read too much into it, the most important thing is what you see in front of you.

Is your baby awake much? I was told that if DD was awake and alert (not crying) for periods of the day, it was a good sign. The more affected babies sleep a lot and when they are awake, they are unsettled a lot due to pain etc.

Sometimes they are too alert and we have to force naps, I think that is a good sign. I do worry about pain sometimes as baby has no way of telling us if they have a headache!

Like pp my baby experienced hie at birth but is developing typically so far. The uncertainty is the hardest to deal with. It's so hard to believe that something could be wrong when you see your baby doing so well.

I really recommend getting some therapy/ counselling if you can. For me that was to process what happened at the birth, but we also got on to discussing strategies to manage the uncertainty of the future.

I agree with trying to stay in the present as much as possible because it really does go so fast. But it is much easier said than done.

I have found family members are often dismissive about potential problems in the future which has been frustrating at times.

I have found social media a mixed bag - connecting with people in the same situation on Instagram has been helpful - I found Facebook groups overwhelming at times because of the profound difficulties some face.

Hope you find the support you need