Parenting is tough – absolutely! Balancing time, energy, feeding arrangements, sleep deprivation etc… there’s a heck of a lot to suddenly manage. When you add being a parent with disabilities or long-term health issues, things can get a lot trickier. I live with seizures and M.E so energy management is hard for me, as is managing seizure triggers and dealing with safety aspects and recovery with those. I started researching help and safety tips when I was pregnant and was astounded at how little there was- there was tonnes of advice for if you have a disabled child but not a lot for if you’re the disabled one- even though your disability will obviously impact your child. That said, i’d like to share 5 things that have made things easier for me with a baby (in the UK).
1. Look at what local help is available to you
It’s very worth trying Adult Services first and explaining the nature of your situation. They may offer help themselves or will point you in the direction of local resources and charities which they did for me.
The charity Homestart has been fantastic for me. After an initial assessment, I met with a matched volunteer to discuss how they could help on a weekly basis. I now have a lovely lady come round for two hours a week who looks after my baby after we attend a local class. The class in question is very tiring for me, but my baby loves it! The volunteer’s help allows me to have a break and recover, ready to look after my baby in the afternoon. Homestart also run a local weekly group where you can meet other parents. I’m incredibly grateful to both my volunteer and Homestart in general for their help and kindness.
2. Keep a backup of easy access healthy meals
If energy is a big issue for you or you have a condition that can flare up and disrupt things then I would really recommend looking into keeping a store of readily available healthy meals. Now my baby is on solids, we keep reserves of frozen baby meals either made by us or from somewhere like MamaMade in case, for example, I have very little energy or a seizure and aren’t up to preparing a meal. If your baby’s having formula then some ready-made formula bottles can save time and energy, though they do cost more. Little things to give you back a bit of time and energy really add up!
3. Tell baby classes about your situation and see how they can help
There is a huge world of baby and parent classes out there and I definitely felt a bit daunted by whether they would welcome me with my disability needs. However, I found it best to just call the classes and explain straight up what my situation was, what my triggers were and then see what they thought about making it work and if they were comfortable with me.
Gymboree– the sing and softplay class we go to has been very sweet to me and removed flashing toys from sessions I attended to avoid triggering a seizure. Our swimming class allowed my husband to sit in on classes so that there was another person to help keep our baby safe if I was unwell too. The MummyFit class I attend also has helped me find suitable exercises which won’t aggravate my conditions. So often it’s just a little thing that makes a lot of difference- but you need to be upfront about your situation- you’re not being ‘difficult’, you’re being smart.
As mentioned there are also lots of services to help you and your health visitor can refer you to your local family center which can also help. I was offered one on one developmental sessions to help with my new baby and baby massage classes which helped me know how to bond better with him- ask and they’ll suggest things to help you.
4. Safety Adjustments for baby furniture or prams
If you have a condition that can directly impact your baby or make things unsafe, you need to think realistically about how you can keep them safe if you’re unwell. Having a decent playpen is really, really helpful for me as I can safely put my baby down in it if i’m feeling unwell and just know that he’s safe whilst i’m dealing with myself. I went for a sturdy one with a gate and floormats and when i’ve had a seizure, my baby hasn’t even noticed!
I also had the wonderful charity ReMap adapt a pram by adding a seizure break to it making it safer for me to be out with my baby. The pram automatically puts the break on when I take my hand off the handle which helps keep my baby safe.
5. Be realistic and kind to yourself
It’s so important to be honest about what you can do and what you may need to do differently. Try to be kind to yourself when it’s tough going. Family and friends are generally kind about supporting you but they can’t know you need help unless you tell them! I try to be kind to myself but I know I compare myself to able-bodied parents a lot and feel guilty that my child gets out less, that I can’t hold my baby sometimes, or that we miss baby classes. I’d give anything to be able to just get in the car and drive to meet people or be able to just leave the house on a whim but I have to be very careful and we have a lot of days at home.
Disabled parents will often have to do things a bit differently but it doesn’t make us less capable as parents. Just remember, you’re doing your best and that’s all you can do. You aren’t any less valid than an able-bodied parent and you deserve love and support. I’d love to hear any tips or resources you’ve found helpful too!
Until the next time…
Ruthy xo
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