How we knew it was time to move on...
Updated: Sep 3, 2018
We relocated 5 years ago, from the renovation house. How did we know it was the right time to move? how did we know we weren't just running away?
We made the decision to move almost 6 years ago now. The doors were closing all around us, life became really tough - Our eldest child was really struggling to cope with everyday life due to his Autism. The development gap widened in terms of social interaction. He attended a great mainstream school with a statement but he was not coping. Academically, he could do all the work set - socially and behaviourally, he struggled. He needed to be in a different environment. He was having meltdowns everywhere, all the time. He was having major ones at school, where I was called in to assist or take him home, at least once a week. The breakdowns could no longer be contained behind closed doors because the older a child becomes, the more that is expected and the social rules are always changing. He was excluded from the one children's disability activity group in our area. There wasn't any other support groups. We were on our own, I didn't know of any other child like my son.
We did get help and support from CAMHs (child adolescent mental health) but he was still struggling. The school and us (as parents) went on specialist courses, but he still needed more support. I read lots of books/websites and attended other courses too. We had tried all avenues of help available to us. Social services were very unhelpful. Apparently the amount of people on our case load was 'overwhelming for him' and 'he felt out of place at such meetings' also because we had been university this meant we were 'capable to handle such situations' - yes these are actual quotes and no this was not covered when I studied Fashion Design & Marketing nor was it in my husbands Electronic Engineering studies. There are 2 sides of children and young persons social services, one side to help neglected children etc and another side to help disabled children. We asked for help and an assessment, which I later found out we were entitled too and met all criteria due to the circumstances we were in but refused, due to the pathetic reasons mentioned above. There wasn't a specialist school local to us that would have met his needs and we weren't prepared for him to go to a residential place.
My husbands job kept him working long hours and would often work away during the week. I also had a younger child with undiagnosed autism at this point, a preschooler and a baby plus a house to renovate and a tight budget to keep. We did not have family around us, so relied heavily on friends to help us, to watch our other children, to help with meltdowns and attend courses. I lived on eggshells, just waiting for the next big breakdown. Life was extremely stressful. I felt very alone. I had friends but they did not have children with autism and they didn't understand the struggles in our day to day life. I could tell them, but its different to living it, every single day without a break, without support. It got to the point of breakdown. I couldn't keep on doing this and changes needed to be made.
We did ask for help but unless you've got experience with this, its difficult to know how to help someone and when you're in the midst of such difficulties, its hard to say/know what you need when in reality, you need so much. People ask how they can help, but where do you begin? How can you ask someone to help with a child that is violent due to his autism, who's anxiety is so high and demanding that changes to routine can end in epic meltdowns. How can you ask someone, knowing they could get hurt? He didn't appear like a typical 'disabled' child from a distance, I imagined people thought I was exaggerating about it all - believing that he would be okay as he's not 'that' autistic.
Just because he speaks well and is intelligent does not mean that the autism should be underestimated or that it doesn't have a profound impact on his day to day life - because it does. You have seen him behave well because there has been so much work put in behind the scenes and we were having a good day. I stayed in during the bad days, hidden out of sight and prayed so hard during the good days that it wouldn't all suddenly collapse because sometimes it did. I was worried I would also be rejected by them too, if they got too close - if they really stepped in and helped, saw for themselves what our life was really like. It was too much for me as a mother, let alone someone else.
People from our church prayed but we needed day to day practical help. Unless I was almost dead, I would always say I was okay because that's what I would deem as being okay, close to death about to die - that meant I was not okay. Other than that, I could carry on - I had too, there was no one else and there was no choice. I didn't choose this life. As long as I was breathing it didn't matter. I had daily chest pains coping with the stress but you know, I was breathing, so I was okay. There was no break from this. I tried to be a good friend, but in reality their lives and problems - whilst stressful to them - were in no way comparable. I'd have loved to have their 'issues or problems' just to have a break! I also felt like an awful person for feeling and thinking like this - that's not what friends should do.
I also needed to learn how to accept help. It is hard to accept help, to not see it as a weakness and also spiritually I looked upon this, he is our child, we should be able to do this - why else would God give us this child? I had already been rejected and its such a horrible feeling that I lived in fear of that, only letting people or friends come so close, as I didn't want to feel let down. There had been comments and those comments stuck. Words are powerful, even those 'well meaning words' from people who were trying to help. The advice from well meaning people who weren't facing the same situations or had real experience of what I was going through - those, those words. All these experiences led me to believe that I could only count on myself and I needed to protect myself from getting hurt, as I was already dealing with so much. I needed to protect my children from those comments. So yes, I struggled to ask for help.
When everything became too much, I had a public meltdown and Church did put in a support rota. We felt we had used up all our favours and there was no way we could pay it back, as we had no time spare to repay favours or help others. Its a horrible position to be in. At one point I badly broke my finger but I just had to carry on, as I felt I couldn't ask for help to look after my difficult child again, whilst I spent a couple of hours at A&E - I just didn't have the time and no one alongside me to say - 'I will look after them, you go to hospital, you need to look after yourself'. Everything was about our child and I was way, way down on the list. I felt like such a draw on everyone around me, I lost my voice (who I was), I lost my confidence and felt I wasn't worth it - hospital was just a luxury that I couldn't have, that was for worthy people who mattered and I wasn't one of those - from my experiences, I wasn't even close to being one of those. I felt a strange sense of peace at being so worthless - as it finally made sense, I was suffering and having such a bad time because I was bad - I deserved this. Lots of my Christian friends had success or what I perceived as minor difficulties, I believed God was Good so therefore it had to be me, I was wrong and all this, was evidence to support my thoughts and cement the beliefs.
Looking back my mental health was at an all time low but I certainly didn't have time to think about that, let alone go to the doctors. I couldn't do an emergency hospital trip for myself, how would I be able to do that? I can be a good actress (I did get an A* after all) and pretend everything is okay. I knew who I was, I didn't want to upset others with my feelings and badness. I didn't want to bring anyone else down with me. Thankfully God did not let me stay at this point but that's for another post...
Jon was unable to find another job locally to be around more, so I spent my long days trying to contain and look after my children, trying to keep the meltdowns to a minimum and survive. Doors for help were closing/closed. It was really hard. I had to muster strength from nothing, follow the advice of all the professionals, not mess up at all during my parenting for I was on show, I was being judged - was it really his autism or is it the family? Is it his parents...
We were also really blessed during this time. We were put in touch with people outside of our area who helped sign post us where to go for help in understanding autism/statements. A couple in the church were unable to help us day to day, but they felt God wanted them to bless us and so they did. They gave us £500.00. To us, this is a huge amount of money - to just be given, no strings attached but to be used however we wished. We were amazed by their generosity and pray that one day ,we will be able to bless others this way. Thank-you God for blessing us through this difficult time. We bought some much needed equipment that helped our whole family.
We decided to relocate back to our home town, where our family lives. Life had to change as I could not continue to live as we were. It feels easier to ask parents and siblings for help and not be expected to do something in return (although that does jar with my nature, as I enjoy helping others), to ask someone to drop everything as its 'another' emergency. There was an active autism support and activity group, and there were more options of specialist schools. The church nearby was run by a leader who had an autistic child and there was a pastoral director at the church. We felt confident that we would fit in better here. We worked to pay off our loans so we were debt free and thankfully the house price had increased enough to break even. The house prices were more expensive in our home town, so we needed to come off the property ladder in order to move. It cost us financially but mentally we needed to move to keep our family together. After all the renovations, I was looking forward to living in a house where I didn't have to worry about renovations and could just focus on our family life.
My husband was then offered a secondment, where he could relocate back to our home town. This was a great blessing as we would not have any loss of income and meant some days, he would work from home. Having an extra pair of hands so I didn't have to take small children to potential volatile situations was a huge blessing.
Moving was painful, we had built a good life and good friendships but God rocked us, He closed doors - not out of spite or because of sin but because He had a better plan for us, He had a new place for us to go to. I had imagined that when God would move us on, it would be a time of celebration/moving on to new things, excitement. Moving felt like a relief, a much sort after change, finally a break and a new beginning. He then opened doors, doors we weren't expecting, confirming that the move was right for us. The planning process took from end of August (the decision) to March the following year, to complete the house (it was a fixer upper), sell it, pay off the loan, find a new job, schools for the other children and a rental home. My eldest child took six months to find a school placement so we had to home educate him during that time. We have now been here over 5 years. It has not been straightforward or an easy 5 years, we had more battles to fight but I'll save them for another post...
Click here to find out about how we found the right autism school for our son.
Click here to find out about our journey on getting our second child diagnosed with autism.