Behind every great man, there is a great woman.

I make no apologies for using this phrase.  It fits what I want to say.  I could even say, ‘behind four great men, there is a great woman’ in my case as it’s obviously my boys I am talking about, not my husband.

I know in this era in which we live, women should be equal, not behind any man or seen to be in a man’s shadow.

But it fits. It fits who I am and where I am today.

I am making a statement which I take for myself, not for every other woman out there, you don’t have to take this mantle on. But I know there will be many of you who feel like I do.

I had a job, a car, my own mortgage, when I met my husband. We met and married later than many, I was in my mid thirties. I was my own woman. I was not dependent on anyone else. I got married for love, not because I needed someone to support me financially but because I wanted a partner in life. We both wanted children and I prayed I had not left it too late. It turned out I hadn’t.

We had twins unexpectedly, a bonus when you are older and don’t know whether you will manage to have more than one child. I didn’t return to work, financially it wasn’t viable. We would have to manage on one full time wage and whatever I managed to earn proof reading and writing while the twins slept.

Just two months after our third son was born, the twins were diagnosed with classic, severe autism. My life was no longer mine. I could no longer work.

From then until now, my life has been as the strong woman behind my boys every step they have taken.

Sometimes people ask what we have done for them. For them to have been non verbal and severely autistic to become who they are now nearly twenty years later.

I start by answering, it was doing ABA (applied behaviour analysis) with the boys, full time from an early age. From the ages of two or just three when they were diagnosed. But, I also know that ABA was for 35 hours a week and there are many more hours in a week than 35. I was the one at home, for all those other hours, behind my boys all the way, shaping their futures.

I am not trying to sing my own praises.  I am trying to justify my own existence and why I gave up my own life as an independent woman.

Sometimes I feel lost. I have lost myself. The essence of Sarah, the woman I once was. I am not seen as Sarah. I am seen as the mother of four boys with autism. The organiser of four social calendars, four academic lives, four other people who depend on me still twenty four hours a day.

I am not sure who the real Sarah is anymore. Another person who I don’t recognise these days. Once every few months, I meet a friend for cocktails ( I have a very select, few, really good friends) and then for a few hours, I am the old Sarah. Maybe a few drinks releases that person hidden within who can laugh and not worry about anything for a few hours.

To all you mothers out there who can identify with that lost woman, who no longer earns her own money, who has to think about everyone else’s lives before her own. You are not alone. We are a silent army.

Our silence speaks in the form of our children. Their successes are our successes. We have to claim them for our own too. I know my boys are destined to do great things in their lives. I hope I have given them the ability to do that.





Why do I dread Annual Reviews?

Between Wednesday next week and the 1st March – which is about five weeks – I have all four annual reviews for all four of my boys.

Oh, and I have three meetings with social workers at home too so they can add their input to the annual reviews.  As a side observation, Hector is over 16 so has been removed from children’s social services and he is under 18 so he doesn’t fall under the adults either and is currently in a limbo place. Thank goodness he doesn’t actually need support from them at the moment, one less visit for me!  I also have two parents’ evenings within the same time frame, time consuming but not so stressful.

The four annual reviews all sandwiched together is a legacy from last year when we had to convert four statements to four EHCPs in a timeframe which ended in March and had been left to the last minute by our LA, having had three years to do it in. The stress of those few months and so many meetings and so much paperwork was just awful.

But, I have had worse times.

Annual reviews fill me with dread. An unspoken anxiety which remains with me until they are over. You never know who will turn up and what you may potentially lose.

At one never to be forgotten day, we had three annual reviews in a row at the boys’ primary school. The head teacher set it up so all the teachers spoke the same phrases ‘we don’t know why your son is in our class’ ‘he cannot access any of the curriculum’. She wanted us to leave. She wanted to get rid of our ABA programme. We had only just won funding for it at tribunal for our youngest son that year.

The shock of that unexpected hidden agenda will never leave me. It was the catalyst for us to move schools within weeks. We ended up with all three boys at a much more inclusive primary schol where they thrived.

From then onwards, I lived in fear of annual reviews. Would the LA try to take away our precious, hard won ABA programmes? Every annual review for every boy was approached with anxiety and sleepless nights and worry that we might lose funding.

One year, at the twins’ reviews age 16, the LA turned up unnanounced. We had no idea that they had an agenda. To take back every child from schools outside the borough and make them all go to a unit in the local sixth form college within borough. She sat there and told us our boys would have to leave and could not stay for sixth form. We only had a few months to get together and do assesments and reports and fight for our boys to stay where they needed to be. We didn’t know until after the summer term had ended whether the boys would be allowed to stay.

Before last year, I tried to space the reviews out over the year to keep my stress down. We have always done the twins’ reviews on the same day which makes sense. Indeed, their two tribunals were held on the same day. By the afternoon it felt like deja vu despite them being non identical and having different needs. They function in many ways at a similar level to each other though and appear similiar on paperwork. Our first Educational Psychologist who was to support us at their tribunal, on reading their paperwork prior to visiting, asked us if we would dress them differently when she came, so she could tell them apart. She presumed they must be identical because their test results were so alike.

The boys are currently all settled. I now have only two placements. The same college for the twins and the same school for the younger boys.  They are all in the right settings for them which we had to fight for. I want them to stay where they are.

I wish annual reviews could be just what the fabulous staff who look after the boys want them to be. An opportunity to discuss how we can all help the boys progress, to look at how well they are doing and where they are heading. Is there anything they need? What do we need to consider?

It should not be a time where I stress about what the LA might remove from their package.