The Diagnosis will make it all OK.

When I talk to people about my daughter they usually have two questions that they ask, number 1 ) How did you know she had autism ? and number 2) How did you get her diagnosed? The order of these questions changes depending on who I am talking to. For most people it is question 1 first, but for those who feel that they too potentially have a child on the spectrum it is normally question 2 that comes first.

You see getting a diagnosis is extremely hard, especially for girls with Asperger’s and waiting times to see professionals vary depending upon where you live. I was recently advised that in the Bristol region wait times are approx 18 months for the initial consultation. Some people may feel that 18 months is not too long, but for someone going through the process it is a long long time. Especially if your child is at school and they have not recognised your concerns, meaning that until your child has a full diagnosis the school will only provide you with a limited amount of support. The other issue is that 18 months is the time until you get to see the paediatrician not the actual diagnosis. The paediatrician will normally require reports from Speech and Language, Occupational therapy, School, GP etc. By the time you go through the process from start to finish you are talking years! Yep years.

In our case I visited my GP armed with a stack of research and information that I had carefully digested. I had notes of her routine, behaviour, mental state, physical state. You name it I had it. I even made her take online assessments. I walked in armed with books and print outs so my GP could see that I was very serious about the situation. She referred us and our referral date was set 6 months later.

My daughter and I attended the appointment, which was an hour’s drive away, great start for a kid with sensory issues, followed by the usual from the receptionist “he’s running late.” Great for kids that need routine! I am an adult without autism and so I understand that these things happen but the anxiety that was building up within my daughter was not acceptable. I sat there thinking these are places and people that are handling these situations all day everyday, advising on them so why put their patients through this. If they can’t get it right how will I ever be able to support her. The other part of my brain thought, well she is going to have to deal with these situations for the rest of her life so lets start preparing her. Come on mum get supportive. Uhh! Caring, emotional parent versus practical tough parent, whilst being supportive at all times.

The paediatrician spent 20 minutes with my daughter talking to her and talking to me. He didn’t probe her for information he just asked general things about her well being etc and he was very good at making her feel at ease. He asked her about her likes and my daughter explained her obsession with animals in particular dogs and horses. At the end of the discussion he said, “Well this is one of the clearest cases of Asperger’s but I need Speech and Language and Occupational Therapy to back me up before I can give her an official diagnosis”. ” I suggest you read books by Tony Attwood as they are really helpful, especially anything that you can find on girls with Asperger’s”. “I’ll see you again once we have that information”

Here we go again.! How long will it be to get an appointment with these departments, and the answer was 6 months. Another 6 months. All through that time I felt a little bit of contentment that I was perusing the right path for her but at the same time a lot of anger that she was not getting support right away. Where were all the miracle workers who were going to support me, get banners out and fight for my daughters rights… at this point I am in hysterical laughter writing this blog. I’ll come back to this later on, bear with me.

Speech and Language allowed themselves an hour to spend with my daughter, with me in the room. The whole process was not too difficult but because my daughter was aged 10 I suppose it was a little more challenging than just observing her play, she was too old for that. They ran through a series of scenarios with her for example, they would show her emotion cards, one I distinctly remember was a man sat in his car with the window down, he had is hand clenched in a fist with a very aggressive look. My daughter had no clue that anything was wrong with this man. These were emotion cards that preschoolers would understand. She also talked, classically she talked too much, about her obsession with dogs and horses. I left the meeting feeling that it was very obvious and the report would back up what I thought. The report however that was provided 4 weeks later left me wondering if the Speech and Language therapist agreed with me or not. I am not an unintelligent person but the report was not easy to digest. It was not a magical report that once opened sang out the words “Yes,Yes you are right, you were right all along, of course she has Asperger’s”. It was a very clinical report full of technical jargon. My heart was telling me though that what I had witnessed in the session was clear for all to see.

Occupational therapy on the other hand were amazing. They talked to my daughter about the sensory issues, which I suppose at the time was one of the biggest problems. Hair cutting, hair washing, bathing, even cleaning teeth, the basic hygiene problems that were so challenging for my daughter on a daily basis. For me it was also the confirmation that these things which most of us take for granted can cause so much distress for others. I felt like another fist bump in the air, followed by a big sigh. It’s a double edged sword, you make progress and get confirmation of what you thought but you cannot loose sight that this is all so hard for my daughter. She explained about how sitting still for too long a period of time was not good for my daughter because it was sending her body into a sleep time state and that horse riding was great because it did the opposite. She provided a report for every sensory issue that had been raised and she provided options of things available to try to relieve the pressure and stress for my daughter. For example exercise balls to sit on to keep the core muscles moving rather than sitting on a chair, sensory toys to chew so that before my daughter brushed her teeth, her teeth would have a chance to become less sensitive, special toothbrushes for her to use that meant she could do the top and the bottom at the same time. Even explaining to me that for my daughter when she has a shower it can be painful as even though it may be the softest spray, the spray hitting her body could cause physical pain. I realised how oblivious I was to so many things that she was going through on a daily basis.

The second date came through to see the paediatrician for April. At the end of our last meeting he explained that he held a clinic a bit closer to our home so that made our journey slighter easier. We walked into the room and within 10 minutes we were out. During the 10 minutes he asked my daughter how she had been, he said that he had reviewed the information from the other departments and that she did have Asperger’s. He said it was one the quickest cases ever. 12 months from his initial meeting with her until now did not seem quick to me but when listening to the process that other people have gone through I realise how quick it was.

“So I said to him, what happens now” ? “Well she has a diagnosis, you put that down on anything that ever requires her medical history” he said . I replied “What do you not want to see her again? Ever? Even when she is 16?”. “No, that’s it she has her diagnosis” he says.

Now you see where the hysterical laughter comes from. Where was the support group, the network of people that were going to provide us with help and assistance and prop us up. Who was going to help me ensure that my daughter received all the support she ever needed. I know that there are groups you can join but they are not specifically tailored for the individual. Every person with Asperger’s is different they all have different levels and different needs and for every 100 conversations you have 95 can be disregarded as their child will be different to yours. From the other 5 you can take away snippets of information. It’s frustrating, it’s a minefield. I hear reports of special schools that fail kids with Asperger’s, I hear reports of health departments that fail them and my hysterical laughter turns to a desire and a passion to continue to fight and support my child and I will have days where I cannot be the best but I wont give up because at the end of the day you need more than a diagnosis on paper and hysterical laughter.

I recently found this photo on my daughter’s Ipad that she had taken whilst going through the diagnosis process and do you know what she’s right it’s going to be OK.

So what do you really think about me?

For those of you who have started reading my blogs you will be aware that my main focus is on my 13 daughter who has Asperger’s and therefore you may be forgiven for thinking that the title of my latest blog is about how people perceive her, it’s not, it’s about how they perceive me.Last week I was prompted by a series of events that made me sit down and really think about how my daughter’s diagnosis changed me.

The first situation was one where my youngest daughter age 8 was off to sing in a school choir, this meant a 5 hour round journey to go and watch her. Another parent, who has a daughter the same age and who also has a younger son who has autism, age 6, was trying to juggle her world so that she could attend the concert. She had a predicament that meant that the only two other people that her son felt comfortable staying with were not able to get to her house in time for her to make the drive up to the concert. I could sense the guilt that she felt as she told her daughter that she would try her best to get to there. For those parents who do not have an autistic child they would probably ask why she did not take the younger child with her. No way, not an option! 6000 children, plus parents, plus the drive, plus all the sensory issues meant that it was a no go zone. I got it, I understood immediately, so much so that I sent her a message afterwards to remind her not to be so tough on herself. Don’t get me wrong I’m not making myself out to be a super hero or Mrs Perfect, it has been a huge roller coaster in terms of learning for me, and I continue to learn on a daily basis. Since the start of the process of my daughter’s diagnosis my life has became all about autism, reading books about it, reading articles, watching TV Programme’s, going to talks, talking to her teachers etc. I threw myself into it because I was determined not to let her down. It’s trial and error. Now though I find myself in a situation whereby all the trial and error has changed me. So how did this mum perceive me? Does she feel that I am a know it all, someone who is rather cheeky to suggest that she should carry on through the tough times? I hope not. She quickly sent back a lovely message thanking me for my support. I hope that I made her realise that she’s not alone in these daily struggles.

Spontaneity, it’s a word I love, or rather I should say that I have a love- hate relationship with. I love it because I used to be spontaneous, I used to be a bit more free spirited but I have had to adapt. I sometimes feel resentful of the fact that I cannot be as spontaneous as I used to be. For example my daughter’s situation has meant that I could no longer go to the shops on a whim, she needed prior notice. Gosh in the beginning of our journey (I call it our journey because we work really hard together to find a life that works for us both) she needed to know exactly how many items I was buying in the shop and boy did I need help if I had said 10 things and then I picked up 11. I still cannot go on a journey without thinking about if she has had enough food, when she will next need to eat, if the shops on the journey or at the end destination will have the right types of food. The toilet breaks, the length of time in the car, her sleep pattern,the sensory issues the list is endless and so being spontaneous is out the window. However, as time has gone on, we are three years into her official diagnosis, a lot of the above has become normal practice for me, so much so that until I actually sat down and thought about it I was unaware of how much of the above I do on auto pilot. Friendships are hard, they require effort and time and I have struggled with both of these things in recent years because parents of Autism have very little support. This makes me wonder though how do my friends view me? Do they find my planning and organisation all rather frustrating? Are they totally fed up of asking me out to social events because they know that 50% of the time I will cancel? Are they fed up of hearing about Asperger’s? I hope not. I hope that they understand that as much as I possibly can I make time for them, that I love listening to their stories about their day to day lives because although I have changed I need them around me.

The second thing that happened was that my 16 year old daughter asked if my blogs will ever be about her or will it always be about her sister. I get it, it’s tough. Yes, you can read all the Instagram posts in the world that give you a sense of what it is like to be autistic but let’s face it unless you are you just do not get it! That is the hard truth. As family members you find yourself treading on egg shells not wanting to say the wrong thing to offend and yet my 13 year old will say, “well try walking in my shoes sometime”. For my beautiful 16 year old though she has her own daily life issues to deal with, she’s working hard at her A levels and yet I understand where she is coming from because she too has had to change. She has to keep quiet whilst face timing friends and due to our routines she does not have as much freedom as she would like. She probably doesn’t realise it yet but the experiences of her family mean that she is more tolerant and understanding of different types of people, that she can see the view point of others in a way that some of her peers have not yet developed how to do. I do not for one moment think that this is easy for her. I wonder how she views me. Does she feel that I am biased towards her other sister? Does she feel that I do not spend enough time with her? I hope not. I hope that she understands that I love her dearly and that my aim is to make life smoother for all of us as a family.

The third thing that happened was that I went out for coffee with some mum’s from school. Again this was not without a lot of prior planning on my part to ensure that my 13 year old would have someone watching her and that she had plenty of food in that she liked to keep her going until my return a couple of hours later. I really enjoyed being out and being able to talk about general day to day ‘rubbish’. It was fun and it is something that I plan to repeat, they are not close enough to understand my day to day life so I do not feel that they are judging me. I did however find it hard to shut off and found my brain wandering to think about things relating to my daughter, again this is an auto pilot situation. So I wonder did they view me as being a bit stupid? A bit disinterested in the conversation? I hope not, one my mum said it was one of the highlights of her week so I couldn’t have come across too crazy. I hope that they saw the positives in me.

The last thing that happened was that I learnt the very sad news that a lady that I worked with had passed away on the Wednesday and her husband had died the previous the Saturday. She had leukaemia and had refused treatment to extend her life to look after him. I found this very upsetting and it confirmed that for our family that we all make sacrifices and for some those sacrifices are really life changing.

Drum roll please…. and the award for the best actress goes to …. the girl with Asperger’s.

“I cannot believe that you let me go around thinking that I was Asian!” These are the words that my 13 year daughter recently exclaimed as we pulled up at our local supermarket. They were quickly followed by my youngest daughter who is 8 saying “But you are, you are Asian” in the most sincere manner, yet with an underlying tone of fear. I personally let out a small laugh, an inwardly felt a sense of achievement that my daughter had overcome another hurdle in her world.

You see my 13 year old daughter was diagnosed with Asperger’s when she was 10 years old. It was not something that I had previously heard of and I had no idea what she was dealing with on a day to day basis. For me the most frustrating thing is the lack of information about girls with Asperger’s. Studies of girls with Asperger’s are much lower in comparison to boys. Girls demonstrate in different ways to boys, especially when they are young and in my experience this meant that teachers and other professionals do not have the information to help her. It also meant that I was left with feelings of guilt and self doubt about how I as a mother did not recognise signs from an early stage that my daughter was ‘different’.

During the process of her diagnosis I made sure that I researched as much as possible about autism, in particular Asperger’s and I was introduced to the works of Tony Attwood. Tony is amazing, his books are clearly written and as you read through chapter by chapter you feel yourself ticking off a mental check list because he has such a clear understanding. http://www.tonyattwood.com.au/tony-attwood-s-profile A book that I found particularly helpful was :

As a result of her diagnosis and for other various reasons my husband and I decided that I would plan my work around her and home educate her and so for the last three years we have spent a huge amount of time together. This has been a huge learning curve for both of us and I learn, from her, on a daily basis. She is inspirational, she is totally amazing and yes she is the best actress I know. Her acting skills were not something that I tuned into to begin with and in fact I will admit that it took me about a year and a half to click on to what was happening in its full extent.

One example of her acting skills is her introduction to coffee. She started to ask me if we could go the coffee shop and if she could have a coffee. We talked about coffee and how its not good for you, how it is a more grown up drink and after weighing up the pros and cons we decided that an Iced Latte would be a good place to start. My daughter, like most young girls with Asperger’s becomes fixated with things, however I am lucky enough to say that she is also very intelligent and was able to limit her new caffeine addiction to no more than 2 a week. She would become a new person with her iced latte sat in front of her, sipping it like a twenty something on a break from her college work. Her ability to adapt like a chameleon to her new surroundings were astonishing, after all a coffee shop is a pretty noisy, crazy and sensory overloading place. In my mind I was trying to think like her and see what had brought about this latest craze.

Then one morning as we were talking through the latest programmes that she had been watching she mentioned Friends. Ah ha ! My brain kicked in and I too watched an episode or two with her. There it was, a bunch of friends who enjoy life, have a great connection and enjoy plenty of laughs despite any issues they face. Who would not want to try and emulate that To date she has watched every episode of Friends at least seven times and there are 236 episodes.

The more I observed her and the emotions she displayed I realised that Friends was not her first attempt at mimicking and copying others to fit in. Without wishing to expose her to the world, I realised that I had witnessed her acting skills from as young as the age of 4. Those of you who have Asperger’s or if you have a family member with Asperger’s will be all to aware of the difficulties of being 4 and not fitting in like the other children at school. Maybe your only option is to act !

One series in particular that she started watching suddenly resulted in her swearing. It was unlike her and it wasn’t meant in a rude or offensive manner it was purely her copying a comedian who was travelling with his father and who both occasionally liked to use the odd swear word or two. My daughter loved the unique connection between the young comedian and his older father. Something about it made her want to copy it, if only in part.

As I have mentioned in my previous blog Florida plays a big part in our lives, so much so that on one holiday my daughter tried to tie herself to a palm tree so that she would not be able to leave. So it was no surprise that she should be attracted to the fantastic series Fresh off the Boat. https://abc.go.com/shows/fresh-off-the-boat/about-the-show After all the characters face everyday challenges in order to fit in with the people surrounding them with their issues mostly due to the cultural differences. Eddie, the teenage son, in addition also faces the pressures put upon teenagers to fit in to society and is a great actor.

So after watching all the available episodes my daughter started to ask why her nose is not like anyone else’s in the family. She then announced that it was because she is Asian. My daughter, I must point out has blonde hair, blue eyes and is fair skinned. This is where she started to bring in some of Eddie’s characteristics and develop a love of Hip Hop, she would spend time listening to Hip and Hop and learning all about the industry, quoting facts and information at an alarming rate. She was adamant that she was Asian and had an ability to identify with this character. It was frustrating, for us all, my 16 daughter would say to her her “Look you are not bloody Asian”, but she remained steadfast. The obsession was not causing harm to anyone it was just concerning for those of us around her who felt that she was opening herself up to bullying and criticism.

Then one day the sh@t hit the fan ! Like most people with autism she hates, no she loathes the supermarket. It has far too much going on, we have lights, sounds, smells, a whole host of sensory issues that are enough to send her running back to her bed to hide under her duvet and so for her she tries to steer herself away from this chaos and chooses to take her mind somewhere else. She does this by getting my attention and asks me repetitively about something. For others they may see it as her being confrontational but it is her tactic to distract herself from her surroundings. On this particular day she made her focus about asking me if she could get brown contact lenses to change the colour of her eyes. As we stood in line waiting to load our shopping on to the conveyor belt the line of questioning became louder, so much so that I could see that it had attracted the attention of an elderly lady who was loading her shopping in the aisle next to us. My daughter was totally unaware of the lady and nor was she aware that she was taking up some small space which meant that it was harder for the lady to load her shopping. The lady asked my daughter to move, but not in a particularly polite way. For my daughter this was a red rag to the bull, she huffed and she puffed and she turned to me and said “This is all because I am Asian, this is abuse”! To which I had to reply “but you’re not Asian are you”. I have never witnessed such utter confusion upon an old ladies face who probably thought that we were as mad as a box of frogs.

My immediate response was that of leaping to the defence of the old lady, but since then my daughter and I have talked through this situation many times and in fairness to her my daughter saw it as abuse.
I am in the process of helping my daughter understand what is right and wrong behaviour, what is acceptable. It’s tough. The old lady did not demonstrate manners, and she certainly did not take time to think through what she was witnessing. Many people these days have mental health and or other health issues and the people who class themselves as ‘normal’ should take sometime to review their own behaviour. So you see the admission from my daughter that she is not Asian means that she is starting to understand that she has this tendency to search for characters that she feels society accepts and to act out these characters. Sometimes it’s nice to escape for a while into a fantasy, I deny any ‘normal’ person who doesn’t we are all influenced by fashion, the media, TV programmes etc. What she has learnt is that you can take parts of a character and adopt it but when it comes to your physical appearance that’s a harder task in hand.

 

 

 

 

 

New Year’s resolutions blah, blah, blah….

I’m a 44 year old woman who has hated New Year since about the age of 16. I’m sure that if this was broken down by a psychologist they would come to the conclusion that the reason that I hate it is because my granddad died around that time and then my dad left us.

The main reason I hate it is because of New Year’s resolutions.  I literally detest the amount of extra weight that we place upon our shoulders with plans to lose weight, get fit, be healthy etc  There are various statistics that you can search up but let’s go with the first one that I found that says 80% of people will have broken their resolutions by February.  You see, there you go a massive amount of pressure applied to yourself by yourself in a society that already has such high demands and expectations.

It’s not that I do not have goals or ambitions; I just resent the fact that people set them in January and then spend the whole of January complaining about the January blues.  Is it me or is it just plain obvious right in front of your face stuff.  Set goal, don’t achieve goal, and feel low about not achieving goal…!!

My husband and I have 3 children, three beautiful girls, the youngest being 8 and the oldest being 16.  The one in the middle is 13 and she has Asperger’s.  High Functioning Autism.  She lives by goals and targets and routine.  She sets goals all year round and she pretty much sticks to them and so she has like a huge number of others set herself her resolutions.  She has made about 20 of them and they are ranging and varied and yet mostly they are things to help her get by in life.  One of her resolutions is to ‘pee on the plane’.  Brilliant! Pure genius.  You see as part of her diagnosis she has lots of other issues, besides the fact that she struggles with emotions and the understanding of day to day situations.  She has sensory issues which cause huge obstacles that she overcomes on a daily basis, such as washing her hair or getting her nails cut.  She also has OCD related problems that cause her problems with germs; this currently results in a number of items of clothing have to be washed despite the fact that she may have only worn them for an hour. 

We travel to Florida from the UK once a year if we can, it’s a wonderful place, we love it and we make sacrifices throughout the year to allow us one week in this amazing State.  For my daughter the journey to Florida is, as you can imagine, extremely difficult.  Not only does she have to face the change in routine, the sounds, the smells, she also has had to hold her bladder for the 9 hour flight.  I know I know, it’s not healthy, how can she do it? The answer is I do not know but she does.  So you see her resolution to ‘pee on a plane’ is challenging and yet she will do it.  She has three months until our next visit and I wonder how she will prepare herself for the challenge ahead? 

So perhaps for once I should set some resolutions but for something that it more relatable to me, and not just following the same path as others with the usual goals of weight loss and saving  the planet, all wonderful causes by the way, just not my thing.  Who knows perhaps I’ll test my pelvic floor muscles and see if I can hold my pee for 9 hours…. what do you think ? Not a chance !