I decided to write this while I was sitting in my car crying, feeling that sense of despair that sometimes engulfs you when you have children with complex needs and are at the mercy of a merciless system. It felt like nothing would *ever* get better... on the back of two weeks of regressions and misery, we'd just had a disastrous afternoon with an Early Help worker from Children's Services - an intervention that we've fought hard to get - where our children were completing an "Anger Map" that just ended up making us all super angry with each other and left them frustrated, me drained and the Early Help worker looking slightly in need of her own intervention.
So while on the taxi shift waiting for our eldest to come out of Scouts, I sat and cried, and then I did what we should do so much more often and got on my metaphorical knees and prayed. God, HELP. I am out. Out of energy, out of myself. Please work a miracle. Lord, please just give us one good day, one good hour tomorrow. A bit of joy to stem the tide of relentless difficulty, tension, conflict, anger. I feel utter hopelessness at the future of our family, but I know I have to take each day at a time. You can do ANYTHING - please just give us one day of grace so we can regain our strength for the battle.
And it was then I decided that I would write this blog because sometimes it's incredibly frustrating when all the things you read about difficult times are written by people who have come out the other side. I'm still in this difficult time. We've come a long way from 18 months ago, but I'm by no means looking back on this years on with rose tinted glasses.
Over the past couple of years these beautiful truths have been reasons not to despair. Some would say encouragements, but I know that for the SEND parent, God's word can often feel more like a lifeline that's pulling you back from the brink in the nick of time than anything else. So call them encouragements or reasons not to despair, depending on how near to the brink you are today.
1) Both us and our children have been given a solution to our biggest problem - and it's accessible and free
"Like the rest, we were by nature deserving of wrath. But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved." - Ephesians 2:3a-5
Our child's biggest need is not an EHCP, OT assessment, CAMHS appointment, sensory room or speech therapy*. Our children's - and our - biggest problem is that we are sinners whose only way to heaven is to live a life of perfect good works and we can't live it. And the solution to that problem is already a done deal. We are saved by a life of perfect good works, but it isn't ours - it's Jesus' life. He lived perfectly, died and was raised back to life and still lives today, cheering us on at God's right hand. Sin is our biggest issue, and we have access to a free salvation for which there is no waiting list and no private appointment fee. Thank God.
*All of these are extremely important for our kids too. But ultimately only Jesus can save them.
2) Jesus is gloriously inclusive
"There some people brought to [Jesus] a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him.
After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. He looked up to heaven and with a deep sigh said to him, “Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly." - Mark 7:31-35
The most obvious act of love and compassion here is the miracle that heals this man, but in a recent sermon I was also moved by the other subtle but powerful description of Jesus' intimate knowledge and love of his fellow humans. "After he took him aside, away from the crowd..." This man would have found it very hard in a crowd to communicate, being deaf, and Jesus just knows his need and responds to it without even being asked.
I think it's especially moving as children with additional needs and disabilities often too find large groups of people difficult or impossible to be in. Sometimes the world just expects them to get on with it and adapt, but Jesus doesn't. He sees the need and meets it without a word. He knows each and every one of our children and he gets it. So when you fight for reasonable adjustments for your kids, know that you're learning from the best. Jesus' inclusivity goes far further than this, too: through him it is possible for us all to have every spiritual blessing possible, beautifully curated for each individual, meeting the needs in their lives, eternally.
3) Your fight for your child is a mere shadow of God's fight for us
This is Jesus in John 17 praying for his disciples:
"Holy Father, protect them by the power of your name, the name you gave me, so that they may be one as we are one. While I was with them, I protected them and kept them safe by that name you gave me."
Any parent has a strong instinct to protect their children, and as an SEND parent that's multiplied a thousand-fold. But all our passion, our conviction, our anger and determination on behalf of our children is nothing compared to the Almighty power of God to protect us. Jesus fought temptation, despair, the desire for the cup of God's wrath to be taken from him, and submitted to death - for us. He did this so we are completely shielded from the power of sin and death, forever. And God is our children's protector too. Not only does he offer them salvation, by his grace he is capable of answering our prayers for our children more than we could ever imagine. That feeling you feel when your Mama Bear instinct rears up inside you - that's nothing compared to God's zealous love for His people and His power and desire to bless us.
4) Your value doesn't come from the quality of your parenting OR the judgement of other people
‘Do not be afraid; you will not be put to shame.
Do not fear disgrace; you will not be humiliated.
You will forget the shame of your youth
and remember no more the reproach of your widowhood.
"Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the Lord, who has compassion on you." - Isaiah 54:4-10
We have such high standards for ourselves as parents, and obviously in many ways that's good. But it's easy for us to slip into the trap of equating a healthy desire to be a good and effective parent with our ability to achieve that indicating our value as human beings. You are a valuable human being no matter how well or how badly you parent. You are worthy of dignity because you are an image-bearer of the living Almighty God. You are loved, deeply, intimately, more than you can imagine. On the days when you flop into bed feeling like a failure, know this and trust in it.
This passage from Isaiah is particularly relevant because God is using a picture here of a woman who is despised by society for being barren and being a widow - both marks of shame in that culture. It's often mothers - and fathers - who are despised and shamed for their children's behaviour when they have additional needs. It's easy to take the judgement and criticism of others to heart and either despair because of it, or let that fear of people drive you to desperately stamp out certain behaviours in your children instead of listening to them and parenting them more holistically.
God has always chosen to make the shamed of society his mighty instruments. David, a weak and small young boy, dwarfed by his macho brothers. Rahab, a disgraced prostitute. Mary, a young poor girl who faced the humiliation of pregnancy out of marriage. His power is made perfect through those who lack power. However ashamed others try and make you feel, know that God values you and is glorified through you and that he has chosen you to be his child and a unique and precious part of his amazing kingdom.
5) He tells us not to!
"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand." - Isaiah 41:10
"But you, O LORD, are a shield about me, my glory, and the lifter of my head. I call out to the Lord,
and he answers me from his holy mountain." - Psalm 3:3
The Bible is populated with people who are in despair. Elijah, David, Habbakuk, to name a few. And they have good reason to feel like this. But after every desperate call to the Lord to hear them, there is always an answer, and always a newfound conviction to trust, to rejoice, to wait in hope on the Lord. God tells us not to despair because he's predestined how it turns out - and because he planned and executed how it turned out on the cross and on Easter morning. One day he will wipe every tear from our faces. Before then, we live in this broken world, waiting in hope and crying out for the grace to live each day for Him, to take hold of the gospel for ourselves and our children, and to pray bold, expectant prayers in the power of the Holy Spirit.
After my prayers in the car on Wednesday night, God did what he so often does, regardless of whether we ask Him to, and gave us some miraculous encouragements over the next few days. He is very very good. But even if those encouragements hadn't come then, even if we'd had another weekend of relentless difficulty, we'd still have plenty of reasons not to despair.
God is our refuge and strength,
an ever-present help in trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea.
Psalm 46:1-2
