Tuesday, October 18, 2011

Not Neurotic But A Potentially Perceptive Mum...Who Knew?

It's been a roller coaster few days.  Emotionally I have been all over the place.  Confused.  Fearful.  Totally overwhelmed.  Crying at the drop of a hat and resembling more a wet rag than a woman.

My concern for Captain Underpants has clouded my every waking moment - and most of my sleeping ones (not that there's been much of that).  Friends have been eager to reassure me that Captain Underpants is a wonderful little boy, who is just under a hell of a lot of emotional strain.  And it's true, that is undeniably the case.

But then again, so is his brother.  Yet his coping skills - at even 2 years his junior - are far more honed.  Now I know Johnny Drama is a whole different kettle of fish and should not be used as a benchmark where Captain Underpants is concerned.  They are as different as chalk and cheese.  But I am still - as their mother - beginning to appreciate that personality differences might not be the only explanation as to why one is struggling and the other isn't.

I happened to mention my concerns to the guy I work with and it turns out that he is a specialist social worker trained to work with children, many of whom have 'special needs'.  (I still can't help but grit my teeth where that terminology is concerned...I know it's wrong, but it just holds such negative connatations for me.)  After I described the situation in brief he very calmly confirmed that there are definite indicators, irrespective of our personal family situation - yet this is not to be perceived as a bad thing.  We talked about it in much more depth and he advised me to go and talk to the school's SENCO (Special Educational Needs Coordinating Officer) to get their opinion.

I then talked to Mr eHarmony, as we hadn't touched base for a while.  Being a woman with blabbermouth tendencies I mentioned to him the issues I was going through with my eldest - and he revealed that he had gone through similar circumstances with his eldest son several years before (his son is now 14).  He had a wealth of information and contacts, should I need it, and would be more than happy to help in any way that he could.

Another couple of friends read my blog and reached out via email, revealing their own journeys along this path (which I hadn't been aware of).  One of them suggested I look into Sensory Processing Disorder, a relatively new 'syndrome' aligned with autism/Aspergers, but not.  I checked out a website online (www.sensory-processing-disorder.com) and, just for the sheer hell of it, had a little looksee at their all-encompassing checklist, making a note of traits that struck a chord.  Once I had a page full of notes - over 30 characteristics (and this was without writing everything down that rung true for CU) - I stopped.

And just started to sob.

The picture through that particular looking glass was overwhelmingly clear.  I felt terrified at what I was potentially getting us - and particularly him - into, but also the most incredible relief that I possibly wasn't going mad.  My biggest fear is that I am being a dramatic, neurotic mother, dragging her poor innocent son into the great unknown, for no reason at all other than sheer desperation, and to detract from the almighty mess that is his family life.  To have a sense that this isn't necessarily the case and that there is evidence to back up my concerns, was reassuring to say the least.  Maybe not mad.  That was a thought worth hanging on to.

Here is a small sampler of the things that rang true to me:

  • Incredibly sensitive, colicky baby with sleep issues and who couldn't be comforted by touch/being held
  • Never crawled.  Walked very late (could be a premature indicator) and walked on his toes.  Hated new sensations - walking on sand / grass / different textures
  • Talked late - and didn't have a tendency to babble.
  • Drooled excessively for first 3 years of life and still soaks his pillow/bed sheets every night.  Sucks fingers / clothing as a comfort mechanism, but was never soothed by sucking a dummy/thumb as a baby
  • Overly sensitive to changes in routine, even now
  • Is often overwhelmed by group situations and will withdraw - even on a play date he has requested - to play quietly on his own in a corner
  • Completely freaks out about his toe nails being cut.  We have recently turned a corner with his finger nails, but this is still something that needs to be negotiated way ahead of time for him to be comfortable with it and to not disintegrate into a nervous wreck.
  • Has an absolute panic attack if he is spun or is threatened to be held upside down
  • Can't stand loud noises - says it feels as if his ear drums are about to explode if he hears something unexpected.  The very thought of attending firework night practically brings him out in hives.
  • When in an active social group he either stand on the sidelines and keeps with the adults, away from all the commotion, or he enters the fray with abandon and is far more excessive than his friends.  He talks VERY loudly and will not stop.  There is no volume control.  He can easily become hyper, which is very out of character for such a sweet, passive boy.
  • He can't sit still at meal times and constantly moves in, out and around his chair.
  • He can't stand his hair being brushed - even with the softest bristles - and as for hair cuts...well, you can imagine.
  • Sits/stands inches away from the television and, given the option, would always dictate that the volume is at least 10,000 decibels or more.
  • When excited or overstimulated he will repetitively screech at the top of his voice, like a large bird being violently castrated.
  • Shakes and moves his hands rapidly and repeatedly in anticipation of something good happening
  • Moves from placid to aggressive in a split second - over reacting to the simplest of provocations, sometimes with violence (his current preference is to choke / attempt to throttle whoever is upsetting him - most typically his brother who has an annoyance factor of at least 1000%)
  • In comparison to his friends, has poorly developed gross and fine motor skills
There are other things that his teachers are picking up on, which are little red flags and which seem 'out of character'.  And I guess this is the thing that is most confusing for me.  Because most of the time, and in the right setting, you could not meet a more delightful, mature, polite, intelligent, caring little boy.  He is ahead of the game academically and quite gifted in maths and science.  He is far more empathetic and intuitive than his brother and deeply cares about the feelings of others.  He is a total joy and I love him beyond measure.

But to ignore the fact that he is hurting and struggling - and that there are potential indicators which could help to explain why (not that I am attempting to diagnose him, I appreciate I am no expert) - will be doing him the greatest disservice.  

All I want is for him to thrive.  

All I want is for him to be happy.

End of story.

And I will do whatever it takes to make that happen.  Ditto for Johnny Drama.

Of course, I have so many doubts about even venturing onto this path.  Where on earth will this lead?  Will it provide any answers, in terms of a diagnosis?  What is more terrifying - getting a diagnosis or not getting a diagnosis?  I am intimidated by my Ex a little and his reaction to the steps I am taking.  I have treaded on eggshells so carefully over the past few years and I know I need to handle this situation sensitively to avoid a potential backlash.  He's a great dad and just as concerned - but I get the feeling that this is an arena which is potentially easier for a mum to negotiate than an A-type, competitive dad (albeit with many sensitive traits himself).

I am particularly frightened of doing CU a huge disservice.  From seeing things that aren't there, to over-compensating and creating a co-dependent relationship.  I don't want to create a handy excuse for behaviour that is simply not acceptable (ie. throttling his brother, much as I am tempted to a lot of the time).  I certainly don't want to make him feel any different to anyone else.  He tries so desperately to fit in and be liked as it is.  But most of all I don't want to constantly be on the back foot, reacting to situations after they have happened and feeling so fucking helpless in equipping him to handle situations in a way in that he understands.

I am also  scared of impacting Johnny Drama.  I don't want to replicate how I felt when I was younger - my sister appeared to be always heralded as much more 'special', 'delicate', 'gifted', 'one-of-a-kind'.  

I also want to feel far more adept at handling similar 'negative' behaviour from both boys in different ways, suitable for both personalities.

But most of all, I am just plain scared.  Scared at how ill-equipped I feel.  Let's be honest, I can be an emotional basket case at the best of times.  I am rarely a placid and calm human being.  My own anxiety,  loneliness, lack of confidence and emotional swings between buoyant happiness and abject sadness is not the most solid foundation for coping with this situation.

And above all, I feel guilty.  Guilty that I have missed years of potentially obvious clues.  Years of people who know me and my son well, trying to bring attention to areas that they have noticed and are concerned about.  

With less than 24 hours to go before the big SENCO meeting this morning, I spoke with a woman who is one of the leading campaigners for autism today and who has knowledge and experience across the spectrum of neurological disorders.  She couldn't have been more insightful and supportive and reassuring.  She had a voice similar to a meditative CD, which instantly calmed me irrespective of the informed advice she was imparting.  The fact that I have this woman in my corner, to go to for advice and support, is so incredulously fortuitous.  She listened.  She reassured.  She articulated simple and straightforward advice, which made absolute sense.  There are obviously no answers at this point, but she talked me through the process, gave me guidance and offered a wealth of support and people to talk to.  God love her, how lucky am I?

And the meeting with the SENCO woman today was...you know what?  I can't put it into words.  It reassured me beyond measure that I am doing the right thing in moving this forward and checking out every avenue.  None of my concerns were dismissed as immaterial.  None of the evidence disregarded.  Yet also - importantly - no assumptions immediately made.

We have a plan moving forward, with in-house assessments to start and specialist assessments to follow. Maybe there is no diagnosis as an end result, but I am convinced I am going to reach a deeper understanding of how to help my son more effectively than I am doing at this present moment.

And that is all that matters.


  1. Great to hear you're getting professional advice. You're doing the right thing for CU. Ask about the impact on JD and how to navigate all that. They will have lots of suggestions and advice; there's no need to reinvent the wheel.

  2. Yes, as Expat Mum says, your reaction must have been experienced by so many who have walked this path before you. Glean other people's wisdom and support. You're doing that already - good for you.

  3. It is really hard to admit that there is something not quite right with your child and so hard to explain to people your reasons. People seem to think they need to tell you that everything is fine but really you know your child better than anyone else and you just need honesty and support. You are doing an amazing job and he is very lucky to have you fighting his corner! I hope you are able to get the help and guidance you need and then hopefully you will be able to get a good nights sleep knowing you are doing your best and that's all that matters!

  4. You're handling this amazingly Nicola. I have a friend who made a similar journey a couple of years back, with similar misgivings to yours. Her husband also didn't want to admit the obvious - that their son needed help - and it was left up to her to make the adjustments needed to their lives. 2 years on, the outlook for their son is so different you wouldn't believe it and her husband freely admits that it's all down to his wife's determination and will-power. Thinking of you. x

  5. I'm so glad that you're getting help to try to understand what's going on. I know how frustrating it is not knowing why your child is different but knowing that it's not quite right. So well done on picking up on it.

    I also recently met with a mum whose daughter has Sensory Processing Disorder. I'll steer her over to your blog. Perhaps she has some advice/insight for you too.

  6. Just a thought... you're not getting CU into anything. He is already there and you, his wonderful mum, are leading him out of the fray and because of you, he will have a much better chance of making sense of the world around him. I've always told the parents of my students with autism, they have a better chance of leading a 'normal' life if you get them the help they need. And that Is exactly what you're doing! Keep at it. Hugs from Oz.

  7. Home Office Mum pointed me in the direction of your post as my daughter (now nearly 8) was diagnosed with SPD a couple of years ago ... so I really feel for you and can understand what you're going through. If you'd like to have a chat on the phone, just reply to this comment and let me have your twitter name or something so that we can DM. xx


    You are absolutely doing the right thing. And you know what? The fact that you are also considering impact on Johnny Drama and wary of overcompensating indicates that you are less likely to allow such things to happen, because you are AWARE. That's a crucial step.

    You are stronger than you give yourself credit for. And we're all here for you.

  9. You are being brilliant and you are doing the right thing for both your boys. I have one who is struggling and I find it terrifying. It will be ok in the end not nec where we thought we'd be but where we were meant to be!

  10. What an inspirational Mum you are!! With all the support you willingly recieve you are doing the absoulute best for your little one. I have worked with parents who do not want to admit that their child needs help, and hopefully if they read your blog they will be inspired to make a difference to their childs life.

    Keep smiling and enjoy the blessings your little one brings you