Mothering Special Needs

The first post in the Mothering series is an interview with Rachel. Rachel and her husband Andrew have two children and in December 2011 their eldest, Zeke was diagnosed with Autism.

What special needs does Zeke have?

By one year, Zeke wasn't hitting his milestones and continued to fall behind. He began flapping his hands and becoming quite obsessive about toys and objects. At that point alarm bells started to ring as I recognised some of the things he was doing as stereotypically autistic. Our gorgeous little man then went through a painful period of regression; his development went into reverse, he lost eye-contact, his social skills and language. This was probably the darkest period we've been through. 

How did you feel during this season?

The hardest thing was the uncertainty of what was going on and what the future would hold. It was an emotional roller coaster; his behaviour would sway each day. It was hard as a couple to agree, because I was spending more time with children his age and Andrew wasn't. I felt a lot of pressure to provide Zeke with as much input as possible; toddler groups and craft activities. Looking back I wish I hadn't put so much pressure on myself - I don't think it was a lack of "cutting and sticking" that was to blame!

How did you feel towards God?

It was harder than I expected. I would fall apart when praying or engaging with God. While this was going on our little girl was diagnosed with Childhood Epilepsy. We were constantly at appointments and there wasn't much time to pray. To be honest, it sometimes felt like I was rejecting Zeke when I was praying for him to change. Autism is oppressive and awful but it is also something which moulds with your child's personality; their strengths and their weaknesses. So it's hard to know where the lines are between him and it.

When I pray now, I pray for God's kingdom to come in Zeke. I don't believe there will be Autism in Heaven. From early on we could see that this was shaping our character and humility. It is much harder to understand how this could be God's best for our children.

Any verses or worship songs which have been a help?

I found two songs from Bethel hugely helpful, 'Your love never fails' and 'Come to me'. Both songs made me cry and made me look up and cling a little bit more to God. I read 'God on Mute', by Pete Greig, while crying in Starbucks. It helped with the 'Why' questions. And I read Isaiah 61 in a whole new way. I'd never quite seen the 'broken hearted' as 'me' before. Jesus came to bind up the broken hearted and to bring beauty out of the ashes. So He came to bind me up.

Have you been amused or embarrassed by Zeke's antics?

Yes, many times. Last year he insisted on carrying a tin of Thomas the Tank Engine spaghetti hoops everywhere he went. He also has strong feelings about songs. If the church band opened with anything non-Matt Redman he would cover his ears and scream "different song". Whereas now he's in a Lou Fellingham stage. We're entering a nakedness phase which I'm sure will be interesting, particularly as he's still in nappies! The genuinely hard stuff in parenting him, is that he doesn't look any different. He can use some language but he doesn't understand lots and he can scream/shout/hit out in public and I can't stop to tell everyone why it's happening so I just have to deal with the stares.

How have your family had to adapt/make sacrifices?

We've had to adapt our whole lives. We are routined and planned. We have to limit the amount of 'people time' that Zeke has. I've given up work. We go to bed very early as Zeke starts the day very early, and we're not nearly as hospitable in the daytime as we'd like to be. But there are also joys like swimming, walks, endless trampolining and lots of laughing. It's sad to miss 'normal' things like birthday parties, nativities and watching him make friends. Having said this Zeke continually surprises us, and when he does, it feels like a wonderful bonus as I don't take it for granted any more.

What are the pains & joys of being Zeke's mum?

A friend of mine has a child with Down's Syndrome. She has been a huge blessing to me. She described diagnosis like a bereavement; you feel a tremendous sense of loss no matter how much you love and accept your child. But the pain of what you've lost does begin to ease and the joy comes with the steps they make that you never thought they would; each a gift of grace.

What have you learnt?

We've both been incredibly broken by the past year's challenges. We identify more with parents going through challenges with their kids. I think we could have been quite smug parents and even looked down on others, whereas we are now completely convinced that we can't do this without God's help.

What are your fears and hopes for Zeke?

We want our children to develop to a point where they can know God for themselves. Everything after that is a bonus. The future is very uncertain. We've been told that Zeke will need much support and is unlikely to live independently, but it is also so difficult to know the development of autistic children. I'm a bit of a planner so God is teaching me a lot, and just as I think I've got Zeke sussed, there's a new hurdle. Long-term we would love to be able to be an encouragement to others parents and testify that God is good and very very faithful even in pain, confusion and the challenges of mothering a child with special needs.

How do you feel towards Zeke?

Zeke is one of the most loved little boys that's ever walked the earth, not just by us but also by family, friends and support workers. We are enormously proud of him and are very grateful that he was ever entrusted to us.

The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners. Isaiah 61v1