To need more support being a Mum

[oakapi]

I lost a baby in 2019, he died at 30 weeks gestation because of a serious chromosome deletion which would have resulted in severe learning difficulties and profound health complications had he lived.

I got pregnant again very quickly and my son was born a year later, he too has the same chromosome deletion, although the amount deleted is very very small compared to the first baby. I have been told by a geneticist that, although all babies are different, broadly the amount deleted equates to the severity of the case (larger deletion = more complications).

I took a long time to bond with my second son and suffered from PND after his birth. He looked identical to the first baby and that bought up a lot of difficult feelings. He also struggled to feed and sleep and had a lot of issues – the words ‘global development delay’ and ‘failure to thrive’ were thrown around. I was told I should expect some degree of learning difficulty and/or autism.

My son is now 20 months and (finally) I am pleased to say that I love him very much indeed. He seems bright and sweet and unexpectedly after he reached age 1 he started to meet milestones - late but still just about within what I assume is the normal window. He rolled, then sat, then crawled all within a few weeks, then walked at 16 months and said his first words at 20 months, both of which actually seem to be the slower end of absolutely normal!

The problem is with me. I monitor his behavior and development constantly and spend all day looking for signs of delay/abnormality/autism/unusual behaviours etc. I thought that now he is walking and saying a few words I could start to relax but I cannot. I hate taking him to toddler groups because I compare his development to his peers constantly. I feel the constant need to know exactly how far behind he is at everything. I honestly find it very hard to enjoy spending time with him because I am only monitoring what he can and cannot do.

Because of the post-natal depression, I have access to a support group and a counselor but these services are only available until my son is 2 and I am worried that is not long away. I also ask a lot of questions on baby forums online and phone my health visitor often but again the birth groups have gone very quiet now the ‘babies’ are growing up and I believe health visitor services also ends at 2.

For example, today my questions are – my son can’t draw a circle, is this normal at 20 months? He can’t jump, is this normal? He is not speaking in 2 word-sentences…. the list is endless each day.

How do I move on from this? I feel like a lot of my issues are that we live constantly in a ‘grey area’, if we did not know about the genetic issue I think I would just assume he was normal. If the condition was more severe we would already have a lot of support services in place. I hate not knowing what the future might hold and how he may or may not develop.

Would it be unreasonable to seek further support? Or do I just need to ‘sort myself out’ and get over this? I wish I knew how.

Oh goodness, it sounds like you have had a very, very difficult time of it which has understandably taken its toll.

I do think you need further help as you must be exhausted by the constant monitoring and anxiety that it brings. It's not a happy or healthy thing for you or your child.

I would start with your GP - it doesn't sound like you need additional help with your child just now, but you do need help with the uncertainty, anxiety and worries that parenting him have caused.

It is NEVER unreasonable to ask for more support for you and your kids. Being a mother is hard, rife with anxieties at the best of time, and it sounds like you've been through a really difficult start, I'm so sorry. Talk to your GP and raise your concerns about support ending at 2. I think it's quite normal for baby group contact to slow down, I know it did with my NCT group, but there are other places you could turn. There are so many facebook groups for parent support, and you may even be able to find a network of parents going through something very similar to what you have had with your son.

As an aside, the developments you listed I don't think my daughter could do any of those at 20 months, and she's now nearly 3 and all things considered seems to be doing really well. Every child is so different. Your son sounds like he's thriving under your care. Please be kind to yourself.

Yanbu at all and you should be able to get that support. I don't know if it exists but it should. The health visitor should be able to help direct you to someone hopefully?
I'm so sorry for your loss. I also had a pregnancy with a baby with a serious deletion (chromosome two) and it's hard enough to deal with that nevermind the worry afterwards (I have had a baby after but as far as we know she doesn't have the same deletion)

Massive hugs

I would be the same, but you've also gone through a big trauma losing your first child. I have no advice but your son sounds wonderful.

Ok I understand your anxieties. Dd1 had a severe, rare genetic condition and died when she was a baby. DTs are nearly 2 but I’ve worried about all sorts of milestones…not smiling, not talking, could x be a sign of autism etc.

I am slowly learning to accept them for who they are and enjoy the now. Have you had counselling/ can you get help with your anxiety?

For what it’s worth, DTs are 23 months. One can jump and one can’t. Both now speak in 5+ word sentences but it’s literally happened overnight for one. Neither can draw a circle.

What an incredibly hard time you have had.
I have had 5 children, all various levels of superpowers or the opposite!, one autistic, probably another one too.
1 out of the 5 met all milestones at the expected time or before. She was way ahead of everything and even now 10 years on is a force of nature. One of my daughters didn't even roll over until she was nearly a year old. My eldest was super slow in his milestones and couldn't walk til quite late for example. He is now working a crazy corporate job and runs rings around others his age.
They are all individuals and you just don't know. Your son will show you who he is. In time.
What I do know is, it does get easier and although you will still worry, you will realise that some things are just not worth sweating over. I still struggle with drawing circles neatly and I am a lawyer.

I am so sorry it has been so hard, You have every right to need support, and I do not doubt you need a damn good hug.
It will get easier. I promise.

It's hardly surprising that you are anxious given what you have been through. Speak to your GP about support and monitoring. I know HVs used to deal with children up to 5 but don't know if that is still the case.
Meanwhile, as you've noticed, the range of "normal" is huge.
As an example, my DS1 walked at 16 months, didn't speak sentences till about 24 months, and still can't draw a decent circle and he is nearly 30! But he could read and spell to some extent before he was 3.
DS2 spoke in full sentences at abut 14 months, walked at about 12 months, and I have no idea when he started drawing circles, but enjoyed waving a paintbrush around when still in nappies.
DS3 only spoke odd words until he was 3, by which time he could ride a bike, and was flagged up as artistically gifted at about 4. He draws well but it all evens out by the time they are adults.
My godson could walk and climb at 8 months but barely spoke for years.
All I can say is that of course you are worrying but it's too soon to be sure of anything.
Your son sounds lovely, just do your best to show him a good time, and remember , comparison is the thief of joy.
As it turns out, one of my boys does have a disability, but it's helpful to no one to be thinking about what he can't do.

HV support is available until aged 5. Contact them and ask for the support, they can signpost to services available