My son was only diagnosed at the age of 12 (almost 13), yet I had taken him again and again over his lifetime. We were under a paediatrician when he was 3, 4, 5, 6 & 7 and she didn’t want to sign him off but only ever said he has traits. I ask now, why did they not just do the ADOS! Because when, at the age of 12, they did do it, it showed clearly that he was somewhere on the spectrum. Not borderline, or mild, which incidentally I don’t think is ever the case.
So there is the obvious frustrations with professionals that I have had all these years and the accusing “have you done a parenting course”, err well yes, twice along with the mountain of books and my own personal degree in counselling of which I now specialised in working with children for the last however many years!!!! “Oh but he is an only child”, yes and again an implication. “single mother you say”, yes and again another implication. There was enough of these implications to make me doubt myself and they scarred so deep that some days I still do.
There was the psychiatrist who told me that he would be best if I got him back into school as soon as possible, writing in her report that we had discussed this at length. NO, she had discussed it and not listened to why I had taken him out in the first place. I am so glad I didn’t get bullied into that, it would have damaged him so much and we would be in such a bad place right now. Apparently the idea was about socialising him? He is not a recluse, he has a few friends and is very capable of communicating in a polite way, socialising to him is like torture. What is the fixation that we all have to be social creatures with lots of friends and work in teams? There are many a pioneer that worked alone and would never had made the advancements in modern medicine, science and technology if they had been made to work in a team! He can do it and in fact is part of a team in dance, but he has managed to do that on his own terms and make it work. Anyway my point is, why is there this big belief that our overcrowded, underfunded and dictatorial, draconian school system is for everyone?
I am so off point now, apologies, but relatively speaking it is all a result of a late diagnosis. The struggle in school to be taken seriously that there was even an issue. My son is the most skilled masker, so I guess what I was saying was not fitting with the image he portrayed. Well it wasn’t to a degree. It was very clear that verbally my son was exceptionally bright, but on paper he was behind in numeracy and literacy. I privately got a diagnosis of dyslexia because the school didn’t think it was that. The ed psych missed the autism though even though now, on reflection, there was some processing markers that should have pointed to it. So all along, the people that could have spotted it or at least run further diagnosis assessments but chose not to. I think the most important factor here for this is that he wasn’t causing a problem at school. He was conforming enough, not showing enough anxiety and behaving himself. The story was very different at home, his anxiety was massive. It did start to show its head at school on a couple of occasions but the first time, in the 2nd year of primary he was beginning to show some school refusal, so I found another school, smaller country school. This school was my life saver! The school had very low class numbers and with two years combined there was 15 students. This meant that they had the same teacher for two years and that learning was split into small groups. It was here his teacher identified his sensory needs, off the record, and adjusted her way with him. They also identified his problems with maths and got him assessed and diagnosed with dyscalculia. He was doing ok, no refusal, still anxiety but less so. He then had to move to middle school! Within the first two weeks things declined. I left him there only 3 months by which time he was waking at 4:30am having panic attacks that would last until he got into school. They had to drag him in a few times and his confidence plummeted through the floor. It was heart-breaking. Unfortunately this coincided with a family situation that had been stressful and the blame was firmly placed on that. I’m not in denial that this didn’t have a bearing on his ability to cope but I know that as soon as I started home Ed he was so much less anxious.
So my decision to home ed because I could see he wasn’t coping, yet school couldn’t, meant that I had to take full financial responsibility for his education. Which is ok if you can earn the money to pay for it. In the first year out I managed to find a fabulous childminder who was brilliant, so I could work 1 or 2 days a week. This wasn’t without anxiety on my son’s part, but because he was with smaller children and going for walks and to the park, it worked ok. Then my childminder gave up to take up a career change. He was then too old to find anyone else who I felt he would be ok with and the gap between him and the younger children was too big. This coinciding with puberty also meant we hit a rough patch. I have had to give up working away from home and concentrate it all from home. I am lucky enough to be in the position to do this. Although this doesn’t always work either. If things become volatile I am then unable to work as much, even from home. The financial impact is enormous!
Now my point here is that if I had left him in school to fail, to become a school refuser, a kid with “behavioural problems” and left him to believe that he was failing, then by now he would have one to one support, extra support with learning and possibly a taxi to and from school or maybe even a referral to a behavioural unit. Imagine the cost of this on the LA? So I ask for support and am told that I am not entitled to it because I choose to home educate. I choose? What was my choice? To leave my son in a situation in which he feels constantly anxious to a severe degree, failing his ability to learn, make friends, with his self-confidence being crushed daily to a point where he feels worthless? That was my choice.
Now had we had a diagnosis earlier then maybe the support that he desperately needed could have been in place. Instead we are left with a young man who is terrified of schools and believes he is stupid in certain subjects, and this is our damaged limitations. He also has to get his head around a diagnosis that he struggles with. As a teen you don’t want to feel different and you want to fit in. Had he had a diagnosis earlier then he would have already come to terms with this.
I think the most saddening thing is the reactions of friends. I know we are just the same as we have always been but somehow they think that we have done alright? We have coped and he has coped. Well no he hasn’t and neither have I. I now no longer have to put him into situations that he really struggles with because it is expected or that it will do him good. Friends cannot see that, they think nothing has changed. In some ways they are right we are the same people, but in other ways everything has changed. There should now be an understanding of why I make the decisions I do. There is to some degree but I am not sure they get how unavailable I am most of the time, because I have worked new things into our lives like down time. Time when I am not on the phone talking, time when I am not having a cuppa with a friend who has popped in unannounced. My time has become really precious and I actually find that if I do get some time alone for me, I am happy and am more able to function at the level that is needed. I don’t need it filling with friends, well not friends who are needing from me, I’m too empty and exhausted. Not one of my friends has offered to find out about the diagnosis or a way in which they could help us practically. I do spout on a lot about it, but they really don’t want to know. I am not sure they understood the pain of the diagnosis. I guess, because it was something I was actively seeking in the end, they all presumed I was elated about it. I was relieved but at the same time I felt bereft. The hope that this was just another phase and that one day my son will step into the big world along with his piers, had just been taken and replaced by a whole new barrage of fears. Will he ever be independent? Will he get a job? Will he have a family? Will he treat his wife (if he has one) in a similar way to me? What will his mental health be? So many new questions and fears that were out of sight before the diagnosis. I am not sure that the people around me understand that and they often say, he will be fine!
I feel like my friends are now so far removed from being part of this. I think I possibly need a set of friends that have been through this. I still love and respect my life-long friends and want to have some sort of relationship with them but I guess it needs to be separate from this situation. They, because they cannot fully understand, and I probably led them to believe, think we have been managing. Well I am managing now, some of the time, but before I was struggling. A bare knuckle struggle that until I have looked back on it, never appreciated how tough it was and can be. If only we had an earlier diagnosis that struggle would have been more about management, a much more efficient way of being. We would have got input from an OT and realised long ago the battles and everyday agony of mind, being and physicality that my son was going through. I think, if only someone had believed me or wanted to help us, we could be in a much better position now. I’m cross that I had to dip into savings to be heard, listened to at a private assessment, to then soon after get the diagnosis from CAMHS, who hadn’t really listened (the support worker had, but not the DR’s)and had just done a few assessments that they thought would show nothing, but showed the answer as clear as day! My frustration is still there and needs working through.
But then maybe we wouldn’t have grown as much as we have and found our own little quirks that get us through. The journey to diagnosis has taught me many things. Things that inform my work and also allow me to educate my colleagues. I don’t blame my friends either. They kind of want to help but just don’t know how and I am rubbish at asking. I guess I expect others to have the same tenacious want, to educate themselves thoroughly and flood themselves with information, because that is what I do, even when they come to me with a problem/diagnosis/dilemma. That is most likely the ASD in me!
We cannot change where we are at right now. There is much to accept and get our heads around, with the determination to look forward and not back, reflecting only on things that we can learn from or help others with.
What a heart wrenching, emotionally draining, re-evaluating, realisation and difficult thing to do!
Because of my son’s late diagnosis, nearly 13 years old, I have not applied for DLA before. In fact I questioned if I should? I couldn’t think about the “extra” stuff I do. That is because I have done all that extra stuff for the past 13 years and consider it our normal routine! Of course I know that most of the time I am exhausted and that I manage my son on a daily, hourly, minute by minute basis. I’m a single Mum so I am aware that demands would be higher than the “normal” nuclear family. ONLY…..
When I really did have to think and answer questions about our daily routine, it all becomes clear as to why I spend most of my days in a daze! The amount of encouragement, planning, negotiating, calming down, reasoning, comforting & persuading is off the scale. It just isn’t measurable, not in the way the form wants you to do! I have had to average everything up but this of course does not highlight the really bad days when it literally takes hours to encourage your son to take a bath, if you actually succeed. I found myself laughing so hard (hiding my mortification and embarrassment) on daily washing! WASHING???? I am lucky if he gets in the bath once a week, let alone daily washing! Alarm bell, Bad Parent ALERT! Easily triggered, have to keep reminding myself I am “good enough”.
The amount of time I have worked to give my son strategies that do work so that he can have some form of normality is not questioned. The fact that all these difficulties always existed but we just managed. The question, when did this difficulty start….Err…let me see….BIRTH! Of course I know that all babies take over and beyond dedication but mine really was at times difficult. He most likely had sensory processing disorder then so sudden noises, hand dryers and crowded places freaked him out even as a small baby. I’m not seeking compensation, or sympathy, but come on? When did this start?!!! I know my rational brain says this form is generic and other conditions are sudden onset or later onset, but I want them to understand my circumstance, the circumstance of many families claiming for Autism. Maybe there should be forms for different categories or even just for ASD? Then the questions could be worded in a more relevant manner that is an easier prompt to remind us what we actually do?
On a regular basis? What’s that supposed to mean, every day, once a week or in my case sometimes regular enough so that I cannot plan too far ahead and have to change plans because he can’t do it that day, but that may only be once a fortnight sometimes longer, but other times every day, more than once!? I don’t want to lie on the form but it is really hard to give a balanced picture of our lives and the impact it truly has when you have to average everything up. The spaces to “explain your answer” are not big enough and sometimes I cannot find the words to explain.
I am a “do it all in one go” that’s how I get things done but I am now feeling very hyped but fatigued and my hand is so painful from the writing. I know that the next few days I will be mulling over the questions, “did I answer that ok” “have I said enough” “did I explain that right” along with the more poignant questioning. I will question how much I do? Could I do more? Do I need help? Does he need more help? Should I have done things differently?
I also now want to get back to thinking of my son as he/himself whom I love and adore and hate having to talk about him having a disability. In our house we acknowledge the ability more and try to manage the “other bits”. I don’t like the negativity I feel when listing the extra things I do for him and what he struggles with. He is so capable in so many ways, it is just unfortunate that the western world is not adapted for him all the time, so we have to adjust how he does it, what we do and how we cope.
My brain is draining of the last bits of comprehension as I write this so for today I sign off!
OK, so third time lucky. 1st time, got him there, wouldn’t go in, the next time I cancelled because he said he just couldn’t but today……
I had to remind him several times this week and was greeted with, “I know” to “oh no I forgot” to “you don’t have to keep reminding me!” the normal string of responses along with a few choice words. 5 minutes before we should leave and a mini meltdown. Finally got him in the car 15 minutes after we should have left. On the way down I am also now on edge and start thinking that I have the wrong appointment time and that it may have been at 2pm not 2.30pm and it is now 2.30pm already and we are late if it is 2.30pm and really bloody late if it is 2pm!!!GGGGGrrrrrrrrr my very own little meltdown. When we arrived I checked my diary and to my utter relief I had got the times wrong and the appointment was at 2.50pm, phew. Only now we have to wait 10mins….
Waiting is worse, I try to arrive as close to an appointment as I can these days because it gives Lil Bear chance to change his mind, get in a stew and have a meltdown. Meltdown only just avoided we finally go in to the dentist. Once there you would wonder what all the fuss is about, smile on his face (for his audience) compliance with everything he is asked, whist I am sat there saying “he is a bit anxious”. They must have thought “over protective mother” as I have the look of a woman about to watch her son about to endure water torture!
Appointment over we get outside and the moaning begins.
Lil Bear “my mouth tastes of rubber”
Mummy Bear “here have a drink”
Lil Bear “no”
Mummy Bear “it will take the taste away”
Lil Bear “i don’t want a drink”
…and so it continues
By the time the car pulls into the drive we are not speaking, I cant even remember what I have supposedly done wrong but he is really angry with me. The day then continues on a somewhat hyper note. He kept popping out trying to make me jump, was just very much in my face all evening and by 1am he was just about ready to go to sleep!
The fall out from the dentist does not end there. The following morning the mood is somewhat worse. A full meltdown where life for him is unbearable and his only expression is swearing, throwing and saying he doesn’t want to live. All this whilst I have people in my work space in the garden, trying to have a peaceful bit of tuition. Some days I just want to cry and find it hard to contain the calm sense of peace that I try to portray to the world. You see I don’t want their sympathy (they being the outside world), I am asking nothing of them other than to not judge me and not judge my son unfairly because the hideous times do not represent who we are. Those times are purely expressions of us being overwhelmed…
Firstly to quote Bowlby you only have to be “Good enough”! The perfect parent does not exist and if it/they did then they would not be setting their children a good example. It is ok to get it wrong and it is what you do then that is crucial. Teaching our children to fail and then put things right is a far better way of parenting than pretending that you are perfect.
Anyway, how did I get to be thinking about this? Well last night I was doing some training with colleagues around providing younger children with the correct environment to flourish. We watch a DVD where examples of creative play, story telling and interaction took place. The respected specialist, whom I have a great deal of admiration for, was narrating and showing examples that we should do this and we should do that. The examples of the things shown were really good engaging activities that looked like wonderful fun. I whole heartedly agree that an interactive, fun, engaging and respectful style of parenting is absolutely right. In fact I identified many activities that I did with my own son. Being identified was, that by using these things meant that your child would develop into a healthy young person and not one of the teenagers that spends to much time on the computer and are unable to cope in the world. EEEErrrrr hang on….my Lil Bear is currently becoming one of those?
So of course, first thing that goes through my mind is “did I interact with him enough?” “did I give him enough stimulus?” “did I get the balance between self play, adult interactive play and social play?” Oh my Goodness, I must have got it wrong, I cant have done enough!!!
Bull S**t….I did all those things in abundance which is why even with doing that stuff I knew that my Lil Bear wasn’t a neglected toddler, but a child whom struggled to make sense of the world in the same way as others did. I have watched other parents do far less than I ever would and some more and at the end of the day if your child has a neurodevelopmental disorder (hate the word disorder, think it should be difference),then with the best will in the world you are still going to encounter a set of problem that you wouldn’t have expected.
I do not once regret putting in the time and energy, then the extra time and energy (because it looked like I wasn’t getting it right). I think trying to give your children your very best attention, ear, support, encouragement and love is absolutely essential. The but is…. Don’t then criticise yourself and beat yourself up when problems arise, if you know you have done your very best, which should not be perfect, but “Good Enough” then your conscience is clear.
It is very hard to get to this state of mind especially when others make judgements and assumptions so quickly and refuse to think that there are other possibilities. I have been accused of being “one of those single mothers” “over protective” “unstable”” Too soft”…oh I know the list goes on. I have sat in meetings with social workers, teachers and other professionals as a professional myself and have heard the generalisation and assumption making that takes place. Even my colleagues who know my situation trail a list of judgements off as quick as examples come up. I stand my corner and get them to reflect on their remarks and remind them that as humanistic counsellors we should demonstrate a non-judgemental attitude. This of course leads us back to being perfect, which we are not. So yes I too make judgements but I like to leave a window for being proved wrong and to do this I listen.
I wish more people would have listened to me on our journey. Lil Bear was 12 when he got diagnosed, a good 9 years of severe anxiety and as for the toll on me………
Already felling guilty that I have spent much time today setting up this blog page! Little Bear signed on for his online school at 9.30am but soon became distracted. Kept coming into my office and doing little things to get my attention. Every time he was asked to go and sit in his lesson he would do the customary moaning groaning and door slamming. In his break all was quiet, I expect he was YouTube-ing something? There are rules as to what he can watch and he knows that I randomly check this so hopefully nothing too sinister today. Second lesson starts, he is at his desk, good sign. This lasted for about 10 mins! He then came and complained about a particular class mate, one which is frequently at the centre of his disgruntled excuses for not wanting to do class. This morning he was gloating that she had not done her homework and that he had (I say he, mainly me coaxing answers out of him whilst I type). He wanted to show me the conversation in class when she had come up with excuses. This you see, makes him feel at lot better about himself when someone he dislikes is not doing too well. I of course try and point out that maybe she doesn’t have a Mum that is supportive with homework and wondered what would happen if he was left to do it by himself. Lil Bear was not liking this theory at all. He couldn’t find the conversation to show me so by this time he was quite pissed of with me so threw a sweet at his computer. I very shortly after that walked away!
I was then shredding paper in my office, Lil Bear came to see what that “really loud noise” was? I then gave him the job of shredding, he can just about tolerate the noise when he is in control of it. That lasted oh….20 seconds. The shredder jammed (operational user error!) so more door slamming followed. About 10 mins later an apology for the door slamming only to be followed 30seconds later with more door slamming because I had said I didn’t think it was a sensible idea to go on a bike ride which takes him about 3 miles from home.
Door slamming and being sworn at happens with great frequency in this house. At the first utterings of what may be the F-word and the dog takes cover. I hate it but try to reason that it is better than a fist or another broken TV, but still its not what I want to hear or be on the receiving end of. Believe me it is not something he has heard all his life, and he is the first to tut at others use of bad language and when he is in sensible, happy mood he cant even bring himself to say crap, so I guess it is an expression of feeling. It wont ever make me like it!