Like many parents this year has been nothing short of living in the eye of the storm or riding a rollercoaster that you just want to get off so everything can just calm down for a while.
We have had the drama of home learning, followed by the return to school but not really resembling school the way we remembered. Following the return to school we have endured twice weekly lateral flow tests for the Sproglet and Husband along with a couple of periods of self isolating.
It would be fair to say that from surviving the Easter holidays and May Half Term we were hoping for a fairly calm and relaxed summer holiday period to recharge the batteries, rebuild the kids from the weirdness of the outside world they have been engaging with and generally just relax.
However, anyone who has a child with additional needs, especially one where you are still chasing a full diagnosis, will know that life very rarely allows for those extended periods of relaxation.
Since that time we have needed to complete a sensory assessment questionnaire that felt never ending as part of a post adoption assessment. We have attended a meeting to try and get the Education One Plan established at school and then fought again to have it sent through to us. We have attended an in person appointment with the Paediatrician. We have had social worker meetings as part of our post adoption needs assessment. We have been told to self refer to a local organisation who support adopted families who have issues with education (more forms and emails). We have been told to apply for Disability Living Allowance (don’t even get me started on how long and detailed this form is) and have had a referal to Occupational Therapy which has resulted in them sending us more forms that they want completed. In addition to all of this I have been attending Non-Violence Resistance training to add extra tools to our parenting tool box which has also required us to spend time reflecting and considering different ideas. Not forgetting that we already have other future dates in the diary for the coming month as well.
It has certainly felt like a whirlwind and can also feel quite overwhelming when you are trying to focus on all the negative and challenging behaviours which is what these forms want you to provide all the information on.
This is not a complaining blog post and is intended to be an acknowledgement for all those parents that are in the same stage of life as us and are feeling that it consumes all their time, feel fatigued at the energy required simply to keep on top of it all and possibly that all the enjoyment of ‘normal’ (whatever that means) family life has drained away.
Here are a few lessons that I have learned during this season of busy-ness, fluctuating emotions and challenging times.
- Make time for your own wellbeing – You are the most important person to your family as you are the adult working hard to hold it all together, so invest some time and energy into your own emotional or physical health. Take a walk, drink coffee with a friend, wander around the shops, take a bath, read a book, take up a new hobby or enjoy your favourite meal or treat (cake or chocolate anyone?)
- Make time for your partner – All relationships experience pressure and challenges but these are most definitely magnified when caring for a child with additional needs. There are plenty of statistics that will tell you that not all relationships can survive those additional pressures. If you live in a 2 parent home or you have a supportive ex-partner make sure that you both share the load together. Make time to enjoy each other’s company where the conversation isn’t consumed by the latest forms to fill out or appointments to prepare for. Find things to laugh about together even in the heaviness. The humour is sometimes one of the few things that makes it feel bearable.
- For those who have a faith – I realise that this will not apply to all but if you do have a faith, set aside some time to pray. I’m sure you are already praying for your child but pray for wisdom, pray for grace to face another day, pray for patience and pray for the energy to keep fighting. Make time to read your Bible. It is jammed pack with encouragement that can lift you up on those tough days. One of my favourite passages in Ecclesiastes 3 which talks about the different times. It reassures me that there are times to cry but there are also times to laugh. Verse 11 tells me that ‘He makes all things beautiful.’ I hang tightly on to that promise because I know that on the really ugly days, the beautiful is still being crafted.
- Find your tribe – One of the big areas covered on non violence resistance is to identify your support network and allow them to support you. Everyone needs a friend that will listen, not stand in judgement, not even offer advise but will just allow you to vent even if it’s not pretty and the words all come out a bit jumbled up. We are really fortunate that we have both friends and family members who have broken into our brokenness and have found practical ways to support and encourage us. We have other people we know who have committed to supporting our children who are also living through these challenges and giving them some respite from the daily challenges of our family life. I honestly think the Gremlin has a better social life than me most of the time.
- Keep fighting tomorrow – I would love to tell you that a day finally comes when all of this ceases to be a problem or a drain and that you all live happily ever after. That has not been my personal experience so far, but I work hard to see each day as a new opportunity to strive for the happily ever after. I also see each day as a new day to get up and fight again for our son. Fight for his happiness, fight for his enjoyment of education, fight for the right support in school, fight for support for his needs and those of our family. I never actually knew that I was capable of fighting so hard for so long but trust me when I say that it comes from somewhere deep inside of you and it will come when you need it to and even when I have felt like quitting, I never have and I never will.
I hope this has helped some. You are doing a great job parenting your family in the midst of some epic struggles. Look for the beauty amongst that because it is there if you look closely enough.
I am also always open to loading up my own toolbox so if you have any other tips or advice, please feel free to fire them back to me and that’s how additional support is also received.