My son turned 18 recently, OMG! where does time go? He is thriving at college doing performing arts and living a “normal” teenage life. But it wasn’t always like this!

I still don’t know what the future holds. I still have concerns with some things that many people take for granted. But where we are now compared to where we were at one stage, can be described as the absolute best possible outcome I could have imagined.

My son finally got a diagnosis of autism/ADHD (Attention Deficit Hyperactivity Disorder) around the age of 9. It had been picked up that something was not right when he was 3 or 4 years old at nursery. I remember being pregnant with my second child and getting upset when I was told something wasn’t right from the head of the nursery. I also remember her telling me everything would be ok as there was great support in place for any kind of learning challenges.  Oh! How wrong she was.

As many parents of children with additional needs will know, you must battle every single step for any kind of help, consistently. The reality is that things have to reach a crisis to get the help that was needed in the first place, and by the time you get it, you are likely to have even more problems on top of the first one.

When and IF you get the help your child needs, your child is in an even worse struggle than before and possibly traumatised, and the parent is likely to be suffering high symptoms of stress. I am sad to say that in many cases the help you get is not adequate to what the child needs. Not in mainstream school anyway.

All this constant struggle takes its toll on relationships, jobs and health.

I can only describe the years of my son being aged 8 to 15 as a nightmare on a few levels. My son was in mainstream school until the age of 11 and they did not cope well with him. By his final year in mainstream school my son was running away from school on a regular basis which was incredibly stressful for everyone. Also by this time his behaviour had gone downhill and he had developed a coping strategy of throwing things, tables, chairs, anything.  When this starts to happen, the child is often labelled as ‘bad’ or ‘naughty’ and you are judged by others as a bad parent and many parents feel like they are bad parents, none of which isn’t true, no matter how it looks. But I knew I was not a bad parent.

Due to all this and him having hardly any academic skills his next school was one just for special needs. He was so angry that he had to go there and it was only a matter of time before his behaviour deteriorated again. However, I have nothing but praise for the school, because even when they didn’t know what to do (and there were plenty of times when they didn’t) they never gave up on him. They tried different things and they always saw the positives, even though they were pushed to their absolute limit

My situation was awful. I was by now a single mother and self-employed teaching pilates and fitness classes and coaching while all this was going on. There was a time when he was not even in school because he was only able to go part time.

Every single time my phone rang in school hours a cold fear would grip me. I had good reason to wonder if he had hurt himself or someone else, or run off, or caused some damage as it was my living reality. I just didn’t know how bad it would be when the school rang and it always had the potential to be a tragedy.

I frequently had to make the decision to either answer the phone or leave it so I could get through the work I was doing and be able to pay the mortgage. It was a really stressful way to live, day in and day out.

Other parents will know the effect it has. It went on like this for years, but you always have to keep the hope. The hope that this review will be different, the hope that today may be a good day, the hope that the medication will make a difference (it took me a long time to agree to meds, I only went for this at the point of not being able to find any hope).  You just have to keep going, stressed exhausted, worried beyond belief, you have to keep going and you do because you love your child beyond anything, even if there are times you are frustrated beyond belief with them and I am not ashamed to say there were times I really was ashamed, and times I felt angry with my son. However, the only thing that would have been a whole lot worse would have been not having him at all and I held onto this often as it showed me how I much I truly loved him in the worst times.

So what changed?

Not the system, sorry to say. It was a few things. He had by now a special relationship with a few of the teachers. We were all just crisis managing with him daily. He came home a lot when he couldn’t cope because the alternative was running off, damaging property, hitting out, or hurting himself and that was worse

I used to take his beloved laptop off him for punishment, we tried all the discipline stuff, but it was never long lasting.

Then one day he called me up and I was between teaching jobs and he wanted to come home. By this time my worry over his academic level was huge. Nothing seemed to be moving forward in this area and he was 15 by now.

I asked him what lesson he had, it was maths. I said no he should stay. He called me back 5 minutes later really kicking off and the choice I had was awful. If I said no I risked terrible things happening, but if I said yes, then it would never ever change.

I said no he couldn’t come home and he had to stay in his maths lesson.

I remember going to the café at work and putting my head in my hands and praying. It was all I had right then and it could have gone so very wrong.

Like I said, you have to carry on. I had another child and a mortgage to think about. My body was stiff with tension and my mind frozen with fear, but I went to my next job, still praying the phone wouldn’t ring.

I got to the end of my next job and the phone had not rung. I called up one of his teachers about 3.pm when I got home and to ask her how the afternoon had been. There had been swearing, resistance and grumpiness but trust me this was a pretty good day.

He got off the special needs bus and came in to the house a short while after that phone call. He was grumpy and sulky but I was so overjoyed and so very, very, grateful beyond belief. Something had now changed.

The other thing that changed in this period was me.

I changed the way I felt about it all. I taught myself self-compassion. Every time a thousand worry thoughts went through my head, I began to talk kindly to myself, I soothed myself with kind self-talk. This had a big effect as the thoughts did not escalate into more worried or worse thoughts, this enabled me to reach a new acceptance of the things how they were and I became more relaxed in general

I accepted every single feeling I had around the situation. It’s easy to be angry all the time about how the system fails you and your child. I just began to accept it. This does not mean giving up. The only thing I gave up was hating it all.

It felt like surrender, I did feel like I was letting go of control, but not in a giving up way.

This awful situation then became more manageable. I became more at ease with it and that changed my relationship with my son. I don’t really know how, but it did.

He could sense a different kind of love from me. It wasn’t to do with him, I always loved him. He has some amazing qualities and we never had trouble at the weekends or school holidays. I think I began to love myself more and take care of my own feelings and it changed everything. I had learnt time and time again never to believe it was ok now that things had improved, because I was always proved wrong. However, after ten months it was a sudden moment, and I can still see it clearly where I was and what I was doing, when I realised it was actually ok now, in comparison to what it had been.

I had an overwhelming thought of “how the f~~k did I get through that”? seven years !!!!!

I began to explore this and there were two main factors. Meditation was a massive one.

Every day in my breaks I used to meditate. This helped turned down the stress response in my brain, which went straight back up with the next incident, but by turning it down constantly it never tipped.

No matter how hard it was, I never needed anti-depressants, my health never really suffered. The worst was feeling tired, tense, angry and stressed, but it was somehow manageable and that was down to meditation without a doubt.

I made the time most days no matter what because it worked. I still meditate to this day, 6 days out of 7 and I have trained to teach meditation too!  I believe that meditation is a key to stress relief, It may not change the situation, but it certainly helps you deal with it in yourself better.

My job is wellness and I have a great interest in many things wellness, such as diet, fitness, stress management, alternate therapies so this also helped a lot me in those 7 years.

Due to my deep interest in wellbeing I decided to do some research in parenting children with special needs and stress, so I went to the biggest researchers in America.

I discovered they found blood cells from women who had spent many years caring for a disabled child were genetically about a decade older genetically than those who had much less care giving responsibility (Nobel Laureate Elizabeth Blackburn)

I discovered findings that mothers of adolescents and adults with autism experience chronic stress in the same league as combat soldiers (Marsha Malick selzer, PHD,University of Wisconsin-Madison)

This research alone proves how important it is for the parents to look after themselves too!

I also then discovered the PSIP – Parent Stress Intervention Program.

Researchers at Vanderbilt University took 213 Mothers of children with all kinds of additional needs and they conducted a study.

One part of it was Mindfulness training and the other was called Positive adult development.

At the start of the study 85% reported significantly elevated stress,

48% said they were clinically depressed,

41% reported anxiety issues.

The first group practiced Meditation and breathing. The second group worked on curbing negative thoughts, practicing gratitude, and reclaiming an aspect of adult life.

This led to significant reduction in stress, anxiety, depression, improved sleep and life satisfaction. It was conducted over a period of 6 weeks and it was published in the journal of Paediatrics and the New York Times.

I was fascinated by what was in this study and how it was formatted. I came across this at the same time it was being processed into a course. It bugged me for days, so I contacted the researchers and the people who had put it together as a course. I wanted to take that course, even if it was just to see what was in it, as it obviously worked well.

But I found our it wasn’t the kind of thing they just give away to anyone. There was a cost for the license and some rules as to who could deliver it.  I was unsure if I would meet all the criteria to be able to deliver the course, as I am not a therapist or counsellor, but I am a trained meditation teacher, I have qualifications in NLP, qualifications in Coaching and wellness, and I have facilitated group work for years.

They agreed!! I was qualified enough to deliver the course! And I would be the first person in the UK to be able to deliver it!!

I spent hours going through the course and it was brilliant in what it covers in the areas parents are most affected by when caring for children with additional needs.

The areas were stress and letting go/grief to acceptance/Guilt to forgiveness/sources of conflict/fear to confidence/pessimism to optimism and there was the Mindfulness Meditation aspect to it also.

It was a really positive way forward for the parents. So I went away and started to set up free taster classes for parents who wanted to do the course and I understand people need to know what they are investing in. Even though I’d worked in coaching and meditation, I had never worked in this area of parents before and so no one there knew who I was.

It was a big eye opener for me. I saw a level of stress I can say I had never experienced before, I also met parents who did not have that hope of their kids getting any better, due to the level of additional needs and disabilities.

I met many parents who just were not in a place where they could contemplate thinking about themselves, they were so consumed with the stress of what everyday life was like for them.

I also met parents who it could help, though there were many challenges with them to meet the time commitment to attend the course for an hour and a half each week for six weeks.

My challenges on this became quite significant in that it turned out to be a huge project to organise on my own, cost wise and time wise.

It was a project that needed other management or organisations involved to reduce this for me to be able to keep going with it. What I needed to do was to be able to just manage running the course and helping the parents who wanted the help. But my additional challenges to providing the course became too much when it came to hiring venues, marketing the course, putting on free taster sessions, printing course materials, sending emails and more! So due to these challenges I have sadly not run the course in the last year.

However, I still have the course and the license to run it and it is a shame that it is not helping the parents that it really could help.

If you are someone reading this and could help out with venues, or know of an organisation who would be interested in running this course, then please get in touch at my email jayne@jaynespenceleywellbeing.com

I truly believe that it is essential that the people parenting children of additional needs look after themselves too.

No matter what the situation is, we need to find that time and make that commitment to ourselves and there is always a way to do this. Everybody deserves some quality of life.

Not only is it essential for our own wellbeing, it is essential for our relationships and so that we can give our children our very best.

If you are reading this as a parent or carer of a child with additional needs, who is not making any time for themselves and these words do not resonate with you, then it is likely you are already very low.

I do not believe I would be the person I am today if I would not have found ways to take care of ME during these really tough years. I think I would have slipped into a depression over time, which would have had a big effect on my day to day life, the life of my children and my future.

I don’t want that to happen to you.

My strongest message and suggestion is simple, find the time no matter what to take care of yourself however that works for you, but just do it, it’s not selfish, it’s selfcare and it’s essential.

If you would like to discuss this with me, in confidence, then please get in touch via jayne@jaynespenceleywellbeing.com. I might be able to help you even in a small way, even if it is just for you to share your experience.

Love and wellness

Jayne