The journey uphill, and the view from here.

Since I started blogging earlier this year, I have wanted to write something, for someone about our first few years with our son. I suppose I have been seeking a purpose for this really before I start. What would people glean from it? What would the point be? Would it educate anyone in anyway about anything?

I’ve come to the realisation that there doesn’t really have to be any point to this. So I’ve just decided to write about it. If it interests you to hear of our journey in the first few years of life with a high need baby and toddler dealing with Sensory Processing Difficulties and ‘High Functioning’ Autism then do read on!

From the out I had this pang deep in my gut that something wasn’t quite right, or how I had expected it to be as my baby and I navigated the first few weeks. I’m convinced that other Mums think this, but for me it grew rather than shifted. In hindsight this feeling looks like big neon flashing signs with arrows; pointing to the word ‘Autism!’, but at the time I just felt we were really rubbish at parenting! Honestly.

All new parents have times of feeling completely out of their depth. I am after all a perfectionist, and people kept telling me how tough parenting was. ‘Oh, it really is tough!’ I kept thinking. So in my own very ‘black and white’ thinking this translated into both; parenting being many times tougher than I had thought and me being exceptionally rubbish with at it. I began to accept this as fact; the fact grew roots in my heart like a tree self seeded and started its journey to becoming a grand oak.

All the other Mums were much calmer and more confident with their babies; they knew them well and their babies didn’t seem to cry all the time. The strategies they tried worked; none of ours did. Their children smiled quite easily; our son didn’t really. They slept on car journeys and at night time; our baby screamed for 4 hour journeys with no hint of ‘dropping off’. I would be up all day and all night; the nights and days merged, the weeks merged; I lost track of the outside world and it’s time frames. Other parents seemed to be enjoying things (for the most part); my joy was paling under the strain of 24/7 high need demands from a very unhappy little person.

It was only really when we sat in our third appointment with the CAMHS Paedeatric Consultant, with my son, aged 5, and she quite casually dropped into conversation the diagnosis that she was giving us, that I began the journey of making peace with my notion of personal failure throughout mothering to date. In fact I burst into tears; she handed me a tissue (she seemed very practised in it) and then I said “I thought I was just a really crap Mum?”. She smiled and told me that no, she had seen I was really a very excellent Mum. The was for me, the point at which my journey forked off into a new pathway, still bumpy and uphill, but with a fresh perspective of the hillside, and where I dared to look back at the journey to there with pride and a sense of self respect rather than an overwhelming sense of failure. I chopped down that self seeded tree, dug out the roots and attempted to move on.

Something changed very significantly. My fears, (undermined by many around me up until then) were validated, but, more importantly I was also thrown a lifeline: my relationship with my son did not have to remain like this for the rest of his life; I did not have to be ‘this’ type of Mum forever. I didn’t have to drown in this sense of personal failure anymore and he might have a chance to be happy and settled.

I often tell our son that meeting the Dr in CAMHS who gave us his diagnosis was like being given a very special book teaching us a language. His body and his mind speak this language, and we were told that day what the language was called, and some places where we might learn how to speak it better. That day we began the process of grieving our mother tongue (which he wasn’t understanding) and learning our new language as a family. Like eager young travellers to a new country; we grabbed our pocket translator and announced to our extended family that we were now moving to a new land; they could jump on board with us and accept our emigrating, or join us when they were ready. We waved farewell to those who weren’t ready to accept that the new land existed. Most of them have jumped aboard; a few are still skeptical but did dip a toe across now and then. We have sold up and moved across, leaving behind anything that wouldn’t fit in our container ship and waving it goodbye with a big smile (and some tears).

This happy picture conveniently forgets the pain we struggled through in the motherland. My husband worked long shifts, often 60 hour weeks, in and out of our home like a passing ship in the night. His work was dark and unrewarding. There were times when my son wouldn’t sleep for 24 hours. None of our Doctors or health visitors knew why. I was kindly and politely encouraged to bear with it. Usually alone for many hours or days at a time.

When I took him to groups, he would scream for the entirety, and no one would speak to me, presumably from embarrassment or helplessness for me. I felt so uncomfortable I rarely returned and stayed more alone, more at home where I wouldn’t upset others with him. I got very used to tuning out the screams at certain points, for small durations, to try to keep my sanity intact. I became comfortable with allowing myself times not holding him in my arms while he cried, and tried to shirk the guilt.

I had a health visitor assigned to me, the most experienced in my local centre. She came over to try to teach me techniques, presumably because she felt I must be lacking parenting skills to have such a sad baby. After several failed sessions on how to ‘hold baby’ and ‘rock baby’ to sleep, she left deflated, with him still crying incessantly as she waved me goodbye with a look of guilt. I remember feeling panicked that she had left me without any plausible solutions. Eventually she returned, and suggested some rest bite tips such as 5 minutes breaks from the cry’s in another room. Ways to measure healthy amounts of time away from him, to last me the long days and nights; as long as it takes to make a cup of tea and drink it. Ways to check he was safe before I left him in another room to break the noise. I got my head down and carried on with my new breaks in place.

Eventually, when he could move more the crying slid more into chunks of time, the breaks in between lengthened. Some sleeping at night started to correlate into a pattern; albeit with constant interruptions to any noise, temperature fluctuation or light interruption. We were stuck for cash, so I went back to my job at a small charity which I worked around my husband’s shifts to save us money. Meantime my husband and I drifted apart, each doing our duty of childcare for our son and then rushing off to work. We overlapped a few times a week, exhausted, drained and a shadow of our former colourful selves. We both drifted into a low somber mood; a survival tactic. We were committed to each other, but just about surviving.

Around the time he started walking at 10 months, I started to notice that my son’s behaviour wasn’t quite the same as the other toddlers around him. He was desperate to move, but wanted to stay attached to me wherever we went. Of course all children go through this stage, but my son has never really moved out of it, even as he approaches 7 years. Of course it has changed a little; now I get drawings from him of us attached together, with ‘we must never be apart’ written on them. The same drawing, repeated every couple of weeks like a reminder note. When we meet new people he asks me if we can be ‘attached’ for all of the meeting ‘till we get away’.

He wasn’t enticed by toys or games at playgroups. He would look at them and scream until I brought them to him or went with him holding onto me, sometimes throughout a whole group. I began to feel quite suffocated by the responsibility, and increasingly alone in my realization that his needs were different. The Health Visitors were happy though that he was beginning to speak, and that he could make eye contact. I doubted myself.

I asked a few family members what they thought. Everyone wanted to be hopeful and positive, no one really wanted to speak the truth or to upset me. My feedback was that he was a little ‘high need’ and ‘sad’ but that he would surely grow out of it. ‘When?’ I wanted to ask desperately, but was too ashamed to voice.

He was highly anxious, which caused me to be highly anxious; it seemed that if I forgot one thing, the rest of the day fell apart; the stakes felt so high. My anxiety impacted him; I became on edge constantly, the pressure was unbearable. We circled each other in a tireless spiral of anxiety, creating ever decreasing circles between us.

I started him at nursery to try to give our marriage some consistency and us some routine to break the days and nights into some sort of pattern. We accepted that we both needed to be in the same space more often, if not to support each other, than to just see each other’s tired faces. We found the money. Grandparents stepped in to cover the childcare we couldn’t afford; they could see we were struggling.

In hindsight the nursery was quite clueless about children whose needs were so unclear, but at the time I put a lot of trust into them to help us. When I asked tentative questions about his development, they brushed them off, telling us that there were other children with more worrying behaviour.

After a year I realised he wasn’t interacting with the other children, and he was still not settling. A Speech Therapist visited and told them he would need more accessing, but he wasn’t there at her next visit, the paperwork was lost and I was told he would probably be fine by his nursery teacher. I persisted with him there, after all it was an OFSTED ‘centre of excellence’. I asked to speak to the SENCO (Special needs Coordinator), but was sent to the Family Worker who offered me tea and a listening ear.

Finally, at the point they were preparing him for school, his nursery worker told me that they had noticed some worrying lapses in his development and school preparedness. I mentioned the A word. She looked very uncomfortable, looked away and said it had crossed her mind on a few occasions but wasn’t really her place to say. My heart sank, and then lurched for hope; might we find a way to relate to our sad boy?

The journey from there led to CAMHS, and to our new homeland, where we reside today; in the same home we started in, but with a totally different perspective.

Now that I look back on our first 5 years, I realise that it was a necessary journey for us, but one that quite almost broke all three of us. The bond it created between my son and I feels unique. I toy with the idea of describing those years as traumatic for us both, but don’t want to seem to be over dramatic. I’m proud that we made it, but I wonder often how those years would have been if I had asked for more help. I suppose I didn’t think I was due any more help, after all, I believed our difficulties were just a lack of ability on my front.

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