With it being my dad’s birthday this week it got me thinking about how important the role of grandparents and the wider family is. There is that well known phrase ‘it takes a village to raise a child’, for those with additional needs it feels like it takes a town!
For us that also includes our boys’ Godparents and church family who are faithful in praying and supporting us. Our immediate family whether they realise it or not will probably go through a time of grieving too. Sadness hits when they see their grown up children’s struggles and fears. They are also experiencing the difference in expectation vs. reality in the relationship they have with their grandchildren.
It really is a labour of love, time and patience with H as at first glance he doesn’t give much in return. He often demands, shouts and repeats and can ask to go home in the middle of a special activity. If you look closely it’s not without hope as there is reward for your investment it might just be more costly than you first thought.
Here are 5 very practical ways that wider family can make all the difference. It’s not a call to be perfect but little things make such a difference to us and they don’t go unnoticed.
1. Don’t be offended if you are ignored, shouted at or if H seems disinterested in you or activities you have planned. He loves you but he often cannot show it, but he does remember. Let him initiate physical touch as then he feels in control.
2. When you suggest something he likes, be prepared to do it immediately! Waiting is very hard for him and he really only manages concrete plans rather than suggestions.
3. Be on time or update us if you are late. H will probably have asked over 50 times when you are coming and it makes it so much easier if we can prepare him. He will probably hide or ignore you when you do get here but he is genuinely excited before.
4. Loving H’s brothers and making allowances for them allows us all relax. Their lives are inevitably affected by H’s needs on a daily basis and they have a lot to process too. It’s a whole family affair!
5. Giving H jobs to do gives him pleasure! He loves a small job with a clear end point so leaving small tasks for him or including him in daily chores is brilliant. We do at home!
A journey together
As H’s parents we are tired, stretched and fearful for the future and this shows most with our family. He really needs 1:1 when we leave the house which is tough and we are not living the life we expected. However just popping in, bringing favourite snacks and sacrificing time to be with us makes a huge difference.
We are very blessed – one family member pays for our cleaner, another moved to be closer to us so she could help and we rarely have to explain ourselves or H’s behaviour.
It’s a journey we are all on together and it’s no accident who your family are. There may be tough times and this side of heaven no family is perfect but there is lots of fun too. So Happy Birthday Papa….!