Would you change things if you had the chance?

Is it possible to grieve for a child who is alive? To wonder and miss the life you thought they would have but can’t?

I see a lot of posts saying that people wouldn’t change their child and that autism is part of who they are. They say that given the chance, they would have their child exactly as they are. I admire these people and I really wish I could share their sense of peace with the status quo or their wish to keep things as they are. If I’m honest, if I could take away J’s autism I would.

Is it wrong to think of and be sad for the person you thought your child would or could become? For the potential that will never be realised and the future that is so drastically different from the one you envisioned when thinking of having children? Is it awful to wish it could have been different and that events had taken a different turn? These thoughts have me very conflicted. On one hand I know I am lucky. Lucky to have him and to know him, to see all that he achieves in spite of his difficulties, to see how hard he tries and how much he perseveres. On the other hand I look back at his birth and the issues surrounding it that I hold responsible for the issues he now has. I wish that none of that had happened and that he could be living a ‘normal’ life, free from the burden put upon him by his disabilities. A life like his brother and sister can have, albeit restricted for now by the need to support J as we do.

I know I’m lucky he lived through it and survived to come out the other side of his birth and post birth experiences. Someone once said to me that if he had died we would have grieved and moved on from it but this way we are trapped in a constant grief for what could have been, always wondering if things could have been different. I was horrified by this thought. Of course I would never have wished the alternative. He’s a miracle and amazes me every day. I couldn’t and wouldn’t want to imagine a life without him. He’s taught me so much and I still tell myself that it all happens for a reason, though sometimes I find it hard to understand that reason.

I often find myself worrying about what the future holds for J and how he will cope or be looked after when we are no longer around. I worry about how people will treat him out in the big bad world and how he will deal with this. I wonder if he will ever be able to have a job or to live by himself. If he will ever meet someone and fall I love. If he can’t will he know what he’s missing out on and how will this affect him?

I love J so much, I love who he is and his personality. I love his little quirks and that way he smiles at me when he’s up to no good and hoping I will either not notice or just let him away with it! I can’t actually imagine him being any other way than he is.

Why then do I have these other thoughts? The ones where I wish he didn’t have he start in life that he did? The ones where he doesn’t have a global developmental delay or autism or speech difficulties? I read often on the subject of autism awareness and acceptance and many people very eloquently advocate for acceptance of people just as they are. They say they wouldn’t change their children even if they could. I am all for this and believe that we should all accept people as they are. I am an advocate of being kind, always. I fight for my child and his needs and his rights. I find out what’s good, what’s needed and I seek to get it for him. I accept J as he is, for the person he is and I love him unconditionally for it. Does this mean I can’t wish he didn’t have his difficulties?

If I’m completely honest I would take away his autism if I could. Not for me or for anyone else out there but for J and the potential he’s missing out on, for his future and the opportunities he could have, for his present and the difficulties he faces and for his past and the struggles he’s had to overcome. I would take it all away in a second because I’m his mum and it’s my job to make his passage through this life as easy and good as it can be. It’s my job to look after him and give him the best opportunities and chances I can. If I had he chance to change all of that for him then of course I would. It doesn’t mean I love him any less as he is, it doesn’t mean I don’t accept him for who he is and love his little personality. It means I’m able to accept my son as he is, to love and support him in the life he currently has but that given the chance to take away his struggles I would do it in a heartbeat. Why then do I feel so guilty for the thoughts of the life that could have been?

I suppose then that in answer to my question I would mostly like to change the start to life J had. I would like him to be less frustrated by being able to communicate his needs. I would like him to not be overwhelmed by the world around him at times and to know how to cope with his worries in a less stressful way for him.

I wouldn’t want to change his loving, smiling, fun and caring personality. I wouldn’t want to change how much he loves me and how often he shows me this. I wouldn’t want to take away his innocence in how he sees things and the wonder he gets from even the littlest of things at times. I sometimes wish I could see the world through his eyes and capture the raw joy in what he experiences.

Would taking away his autism change these other things? I don’t really think so. Autism is a part of who J is but it’s not the whole. He is so much more than his autism, so capable and resilient in spite of the difficulties and challenges it throws at him. Maybe having these challenges helps to shape in into the little character he is but when I see him distressed and in full meltdown mode I can’t help but wish it was different for him.

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Visiting the doctor

I dread taking J to the doctor. He really doesn’t like it. We always have to wait past the appointment time, so he’s already had enough before we even go in. He hates the confined space and wants to either escape or play with all of the items around the room. Some doctors are more accommodating than others, some have toys he can play with to distract him and others allow him to explore the things around him. Others can be impatient with him, have a stand-offish manner and are sometimes quite dismissive.

With all of these previous experiences stored up in my mind, I took him for an appointment yesterday after I finished work. I started to build it up as soon as I left work. On my drive home I began to play out all of the possible scenarios in my head and plan possible reactions and diversions for each one. What would I use to divert his attention if he became distressed, how would I get him to sit and wait in the waiting area, what would I do if he refused to get up to go in, how would I stop him spinning the fan or opening the filing cabinet? The list goes on and on. We have had so many appointments with so many different people over the last few years. Each one brings challenges, new surroundings, new people, different levels of experience or tolerance but almost always the same or similar reactions from J. He does not like it!

Today started off no differently from usual. He was whining as we went in and very unsettled. He wanted to play with the bead run where some smaller children were playing. I managed to keep him back until they moved away. He then jumped around the table moving the beads and running back and forward to check I was watching. He was happy with this but kept saying his approximation of ‘doctor’ and whining intermittently. We waited a long time past his appointment time. He then decided he needed the toilet. We have been trying to train him, so I didn’t want to say no. This meant a journey back to the main door, which was a bit away and I was worried we would miss our slot. I waited in the reception queue to tell them but it was long and he was dancing around holding himself. A very nice lady in front of me in the queue said that she would let them know I was taking him if he was called to go in. She asked his name and smiled at us. I thanked her very much and hurried off to the toilets.

People who know me well know how big an issue I have with public toilets! This was a major ordeal for me. I had to clean up the toilet a bit to let him sit on it, hold his hands and hold him so that’s he didn’t touch it and make sure his trousers did not touch the edge or get wet! Then came the hand washing and drying. He hates hand dryers so that was an issue, luckily I had tissues to dry his hands.

On returning to the waiting area the nice lady told me that his name hadn’t been called yet. I thanked her again, though it probably wasn’t enough to show how grateful I really was. It was so kind of her and it’s not something I’ve ever had before. We waited again and J was getting really fractious by now. I was starting to worry about how he would be when we got in.

Eventually a young doctor came round and called J’s name. He smiled at J as we walked over. J began to whine and say ‘doctor’ several times and the doctor replied ‘yup, that’s me!’ As we walked to the room J started saying ‘ahh here’ while touching his hair. He seemed to think the doctor was going to cut his hair! The doctor reassured him that he wasn’t going to cut his hair and this seemed to put J as ease.

I have to say, this doctor has been the best GP J has seen so far. He was calm, friendly, funny and he really seemed to make J feel a bit more comfortable. There were even some toys that J could play with and a little table for him to sit at, which just made his experience better. It wasn’t perfect, J still whined and was unsettled but he let the doctor feel the lump on his head, look in his mouth, take his temperature and sound his chest. He even gave the doctor a cuddle because he knew who Spongebob Squarepants was.

As we were leaving he did try to steal a couple of smurf toys and was a bit reluctant to leave without them, but we can’t have everything. He got through the appointment and the doctor got to check what he needed to check. All in all I think that made it a huge success. Small steps for most but a massive leap for my boy!

Thank you to that doctor and to the lovely lady in the reception queue, who both made a relatively unpleasant task a lot more bearable.

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Fumbling through the fallout – coping with my son’s autism diagnosis

Originally featured on Meet Other Mums

I’ve debated posting this for a while now and have written different drafts and then deleted them. The following post is the lead up to and how I coped after J’s autism diagnosis. It’s all about my own thoughts and feelings, the effect on our lives and our family.

J had a difficult birth and a rollercoaster of a week afterwards, followed by many follow up visits and appointments with a long list of health professionals. In the beginning, right after his birth and in the days that followed, my fear was that he wasn’t going to survive. He didn’t feed, had a ‘floppy incident’ and ended up in intensive care hooked up to a variety of machines. Once this crisis passed and we were able to take him home, we worried about his colour, as he was very purple and I had to set an alarm through the night to waken him up and feed him. 

We got through this and then the follow-up appointments with the paediatrician. It seemed like each time was a little more pointless and I still didn’t know what to expect or what/if anything would be wrong going forward. Once J was one I was a little more adamant at his visits. He hadn’t reached certain milestones, crawling, sitting up, etc within roughly recognised time frames. At this point he was referred for follow up in the community with a paediatrician, physio and occupational therapist. The physio gave exercises to try to strengthen his core and help with his hand grip and movements. The paediatrician scheduled appointments for us to talk and get not very far and the OT took a little while to see him due to his age. 

After several months the physio said that the way he used his hands was how he has adapted his movements to carry out tasks and there wasn’t much more she could do. She discharged him but said we could re-refer in future if we wished. The OT completed sensory questionnaires and tried different turn taking and sensory activities with him. The consultant arranged a birth to three multi-agency meeting, which didn’t have a major result other than to refer him for further assessment. All very frustrating and a long road to travel for all of us.

Out Health Visitor was great, she arranged a pre-three nursery placement application to support J’s development and attended the initial meetings to fight his corner. There were so many meetings to attend and reports to read! Eventually he was referred to a specialist team to determine whether he was on the autistic spectrum. The waiting list was long but eventually when he was 3 years and 2 months old my mum and I took him for his assessment. 

I remember every part of that day (and those who know me know my memory is not all that great!) I got away from work to go with him and we struggled to find the place the assessment was taking place. For some reason the map showed the street ending at a garage and after driving around several unknown streets, I had to call for directions. It was a white building and we had to park on the opposite side of the road. The boy on the desk was helpful, he had difficulty with eye contact and I later found out that the centre employ people on the autism spectrum to give them experience in the workplace. 

Once there went in to a room with a sofa and small pool table. There was a small adjoining room which had some lights and toys inside. J was allowed to explore and play between the two rooms while two speech and language therapists observed him and chatted to us. After this one of the therapists took my mum and I to another room for a more formal chat and J, reluctantly at first, stayed with the other therapist to play. We were asked many questions and the therapist referred to reports submitted from others involved in J’s care and education. Some of the things they had written were news to us. I was a little upset at this, as I think professionals should be up front in telling parents their findings. 

At the end of it all we were told that yes J had autism. He had a wider developmental delay but part of his delay was related to autism, though it was not the sole cause of his developmental difficulties. We were given some leaflets about two charities who work with children and parents and told that the full report would be with us in a couple of weeks time. And that was it really. Out into the big bad world to go back to our lives and just get on with it. All that build up and the long road to get here and within a couple of hours it was over and we were back outside the building and on our way home.

I think initially it didn’t really seem like it had happened at all. The build up and expectation was so much more than the diagnosis itself. I didn’t think I would be all that bothered about it, as it had been what I expected to hear anyway. This wasn’t the case though. The confirmation came like a big hard punch in the gut. I think it was made worse by the fact I hadn’t been prepared to feel that way about it. I cried, a lot, at times after that day. My mind seemed to now wander to the childhood and future J may miss out on, the limitations for him and the hardships he may face. It was all so uncertain, no one really knew what the impact would be for him. In fact, we still don’t really know.

Initially nothing changed; work went on, life went on and we just got on with it. I think because we thought we were prepared for what we were going to be told, we hadn’t actually prepared for what would come afterwards. I hadn’t prepared for the thoughts that became more concrete and real after hearing the words. I went on through the next days and weeks almost in a state of numbness. Still as though it wasn’t really real. Once the initial shock settled a little my thoughts moved from what J would miss out on to what we could do to help him as much as possible, to support his development. I had thought that a diagnosis would have helped in a way, that there would be more support. I couldn’t really have been more wrong.

The first people the diagnosis helped were the staff in his mainstream nursery. It gave them further ammunition to say it wasn’t a suitable place for him. They had been determined that this was the case before he even set foot in the door and before they had met him. They were always keen to point out the things he couldn’t do and the difficulties he had. None of the discussions ever seemed to involve how they could accommodate his needs or try to help him. It was made very clear that he wasn’t wanted there before he even set foot in the door and each meeting just added to this. As a person who had sat on both sides of the table in these types of meetings, I wasn’t prepared for the side I was on. I hadn’t expected their input to be so negative, for them to be so unwilling to do for my son what I have gone out of my way to do for other people’s children. He was already at mainstream nursery when we received his diagnosis. It just seemed to make them all the more determined to push him back out the door.

As part of their wish to show me how unable he was to cope, I was invited to go into the nursery to observe him. I took them up on the offer and hid in the kitchen to watch so that he couldn’t see me. Initially he joined in with group time, walking round the group to count people and joining in with the song. After this he sat for a short time before going with his assistant to a separate area where she brought out a bag of ‘activities’. I have to say I was disappointed by what I saw and it really confirmed for me how little they knew about him. It showed me that because he was non-verbal they just assumed he had absolutely no ability to understand them or to comprehend activities. The bag was full of toys a baby would use; stacking rings, a bead run, toys with sounds and flashing lights and other toys that were things he had been able to use at an early age. None of them were designed to aid his development or progress in any way. They were all there to keep him quiet/entertained and out of their way. The visit really opened my eyes to how little they were doing to try to accommodate his needs, how little they knew about him and really how little they cared about his progress. For them it was simply a matter of waiting it out until they could get me to give in and move him elsewhere. To say I was heartbroken by this doesn’t go far enough. I was devastated by how little they wanted to try, by how hard they were trying to get rid of my boy. To make matters worse they kept insisting that they ‘only want what’s best for J and what’s in his best interests.’ Did this mean they thought I didn’t know or want this for my son? For a while I questioned myself on this. Was I doing what was best for him, were they right, was it me who didn’t know him well? They made me doubt myself and my ability to make decisions about my son and his development/education. Looking back now I still believe they were wrong. 

After his first year there I decided to move him to a Language and Communication Support Nursery. Not because I felt it was his best option but because I knew where he was wasn’t working out. I have to say I place responsibility for this at the feet of the head teacher at that time and his key worker. Had they been more willing to try, I am certain it would have been more of a success. I always knew J would not cope with attending a mainstream primary but nursery is an entirely different setting and he had a one-to-one ASN worker with him. His placement failed because of an unwillingness to support his needs and perhaps a fear of the unknown on the part of the staff. I didn’t move my son because I thought they were right or because I thought he couldn’t cope. I moved him because they couldn’t cope and he was missing out as a result. 
His new nursery was wonderful. They were so welcoming. It was a smaller setting with less children, which was a bonus. They had a genuine warmth and each time I visited I could feel that they were invested in J and his needs, his progress. The language they used was so much more positive and almost immediately I could see that they made an effort to get to know him. When I went to the first progress meeting for his support plan, the first parents evening, the open day, right through to his graduation; everyone was so welcoming and positive. They knew my son and his needs. They had a genuine warmth when they spoke about him and they celebrated all of the things he can do (and there are many!) 

The next fight came when it was time for him to go to school. We asked for him to attend the school where his nursery was. It doesn’t happen automatically as they work separately. The letter arrived with his placement and it was for a school 16 miles away. At 4 years old they wanted my son to make a 32 mile round trip to school each day! We appealed and heard nothing, then we heard the same answer and we fought again. Eventually after lots of back and forth, sleepless night so, letters, phone calls, etc. he was allowed a place in the school we wished. It was certainly worth the fight. It’s such a wonderful school. I genuinely feel uplifted each time I visit. Communication with and involvement of parents is great. The staff seem to genuinely care about the children and set high expectations for them. They challenge them and go to great lengths to give them such a variety of learning experiences. Success is celebrated and I can tell that J is settled and happy where he is. He even managed to tolerate a bit of the Hallowe’en disco this year!

I suppose in a round about way what I’m trying to say is that I thought the diagnosis would be the end of the fight, the beginning of help and support being offered. This was not the case. If anything, it was the start of a bigger, longer, harder fight that continues today. Nothing J has had was offered up or easy to find out about. It involved a lot of research, asking loads of people, contacting many different departments and agencies, writing countless letters and emails and basically badgering anyone I was able to get in contact with. 

I like to think that I’ve come to terms with the diagnosis and all of the things that have gone on in his life so far. Truth be told each part has left its mark. I’m not the same person I was at the start of this journey and I’m unlikely to be the same person at the end as I am even now. However, as long as the person I am gets my child what he needs and ensures he has the best chances and opportunities I can get for him, then I’m willing to be ok with that.

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A tribute to the most selfless woman I knowย 

Last week my mum celebrated her birthday. I agonised for ages over what to buy her before eventually just asking her what she would like. The reason I find it so hard to get something is partly because I want it to reflect how much I think of her, how much I appreciate everything she does for us and to show her how much she is loved. Is there something you can buy that truly shows all of that?

My mum is amazing. She’s always around, always a shoulder to cry on and a rock to depend upon. I honestly do not know what we would do without her. From when we were little she has always put my siblings and I first, herself last. Now that we have children of our own she does the same for them. My mum and dad look after our kids whilst I work. Without them I would have to give this up, as J wouldn’t cope with a child minder or after school club environment. Instead of relaxing, winding down and enjoying retirement my parents are back to doing what they did when we were young (possibly more, as they help with looking after all 7 of their grandchildren!) They are so great with our kids and I don’t think we will ever be able to fully show how much we appreciate it.

To help with the kids’ routine and mine, my mum picks them up in the morning and they get dressed at her house. This saves them being dressed too early and allows me to get ready and go to work. They are then ferried to their relevant place of learning or looked after by my parents through the day, sometimes until fairly late by the time I pick them up when I finish work.

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Be kind, always

I have read so many sad and tragic stories in the news recently. There seems to be death and destruction everywhere. I have to admit it’s been getting me down lately.  There are some of the stories I just can’t seem to get out of my head though. Of course attacks like in Turkey, France, Germany, Belgium and across many countries throughout the world; the ongoing wars in many countries and the oppression of people is so terrible and hard to comprehend. I’ve come to the conclusion that there are some very bad people in the world. I also think there are some impressionable and sometimes vulnerable people, who are indoctrinated and brainwashed into thinking a certain way and some people who are most likely mentally ill. This doesn’t change what they’ve done or make the families feel any better though.

The stories I have found stuck with me most over the past few days, were the more local ones; related to the deaths of children in tragic circumstances while they were playing, going on holiday or enjoying days out with their families or friends. The circumstances themselves are upsetting and tragic enough; families shattered in an instant because of some unforeseen event or circumstance. I can’t (and don’t ever want to) begin to imagine how these families feel. What I find all the more heartbreaking is the reaction of certain other people.

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A Mother’s Love

What would I do without my mum? This is a question I don’t want to have to find out the answer to for a very, very, very long time. Not least because she gave me life, provided a safe and happy childhood for me and my siblings, worked hard to provide for us and give us everything we needed; as well as supporting us through school and university, listening to our woes, wiping tears and helping to turn bad times into something good. My mum has always been a strong woman who would do anything for her family, often at the expense of herself. She’s a great example of what a mum should be; selfless, kind, loving, as well as firm (when we need her to be), fair and always available in times of need.

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Sleep

J’s sleep is not good. It’s hard to get him to go over to sleep in the first place and then once he does he never sleeps all night. He can be up many times each night and it’s difficult to get him back over to sleep. He is also a very early riser. We have a bed time routine in place and we try our best to ensure calm in the lead up to bed time, a nice calm environment in his room and soothing lights which he likes. It doesn’t seem to help much. Difficulty with sleep can be a common problem for children on the autism spectrum. I have googled it many times and read a mountain of information about it. Some of the links I found more useful can be found at the bottom of the page.
My mum and I went along to a Sleep Scotland workshop which was set up to help parents learn a bit more about sleep and to offer some strategies to those who are struggling with their child’s sleep.

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