When is an attachment disorder not an attachment disorder… When it is PDA!

 

Today, I had a brief conversation with the Head teacher of Dinky’s school.

She is just like the head of dinky’s old school, and it does not surprise me that they worked well together in a different county!

I was explaining the whole ‘experience’ of dinky starting at her school. At one point she cut me off….

HT: Is it just the two of you

Me: Yes, we did share a house with a friend, but it is the two of us.

HT: Well, I thought I would ask as from 0-3 children form attachments,  but if someone just disappeared out of her life it could cause an attachment disorder.

Me: I don’t think it is an attachment disorder.

She went on to say that she is going to get all her staff who come into contact with Dinky together and get a better understanding of what she is like in school. She said she would contact the first school and speak to her good friend. Also she wants to contact the CAF lead professional.

I am not sure what is going to happen but she is going to get back to me Friday.
I’m just so sick of everyone assuming that it is anything but what it probably is. Thankfully this ignorant and arrogant head teacher is not a medical professional and her opinion matters very little in terms of Dinky. I was shocked by her assumption and plan on putting her straight, I intend to write a letter to her explaining that while she is entitled to her opinion, even if it is after meeting me for all of 10 minutes and never having met Dinky. Also that dinky will be attending the autism spectrum clinic within the child development centre for assessment. This is the direction the medical professionals are going in and I would appreciate any other gems of unqualified assessment be kept to herself in future.

I understand that this may seem harsh but I will not allow someone to make out that I am to blame for dinky’s difficulties, when I finally get round to stopping blaming myself for how dinky is. Also if I let them walk all over me now they will continue to do so.

Dinky’s refusing to get ready to go to school is getting worse, and the meltdowns afterschool, while not as bad as Friday or last Sunday, are still happening and is now almost a daily occurrence. However today she was a pickle coming out of school as the teacher wanted to talk to me. She had had a bad day at school.

On the way home I let her pick dinner from the shop and she could pick a snack for the way home.

Once home I let her pick when dinner was, and how much she had. She span for a few minutes and then sat to watch Netflix. After dinner I sat down with her and asked her, when she was relatively calm, if she liked school. She said no, her reasons were:

  • I don’t like being told what to do
  • I don’t like carpet time because I want to sit on my own
  • I want to be the teacher
  • I don’t want to write- all we do is write, write, write

add that to her previous reasons from last week

  • My teachers don’t believe in me (maybe meant believes her?)
  • X wont play with me anymore
  • My teachers tell me not to worry but my brain does it

I must admit I did say to the teacher, after she said Dinky was harder to handle today, that I was less than impressed with the head, and that dinky is getting worse at home too. That dinky doesn’t want to go into school in the mornings and we had a massive meltdown last week because she realised it was back to school. I told her I don’t want to see my daughter suffer, she is 5 and in her first year of school, and I can see this is only going to get worse. I also confided that I am losing faith in their willingness to support her, she may be academically able but she needs support with the other side of schooling, the social and behavioural aspects.
The teacher agreed, she said that they will try to find a way forward starting with the meeting tomorrow. She will try and make sure that the SENCO is brought in properly, as now she is playing up more in class.

I just hate seeing her like this.

I have to think about the good things though… she still cracks me up on a daily basis!

We were walking home and dinky wanted to stroke a dog, so I let her. instead of saying goodbye she barked at the dog. I asked why she barked

 

“Because dogs don’t speak English!”

Gotta love her!

Tomorrow should be interesting with the meeting at school!

 

I never thought I….

would have become a mum, let alone a mum of a special needs child!

Todays post is inspired by an email I got this morning asking what I am doing now that I never thought I would. This is the biggest…

 

Let me explain….

It is no secret that I had a rubbish childhood, I always said I did not want kids. I did not like the possibility that I could end up like my mother (As an indicator of just how far she went… I still have very feint scars on my arms from where she attacked me with a hot iron). Of course I was told that was a stupid notion, by the same counsellor that said maybe she was abused which is why she did what she did. Truth is, I will never know.

When I fell pregnant with Dinky I had no idea until I was 6 months gone. It took the question of termination out of my hands. I wondered almost every day of my 3 month pregnancy, whether or not I would have done it. Termination is a very personal thing, and there are very strong opinions on it. I don’t think I could have terminated the pregnancy, even if I did have the choice. However it would have been nice to feel like I had a choice whether or not to embark on being a single parent whose only idea of a mother was one who was always angry and who used me like a human emotional and physical punch bag. Even if it wasn’t a real choice.

I worried continuously about the type of mother I would be. I was scared.

It didn’t take long before my contingency plan was that if I ever hit my baby in anger I would give the baby to social services myself, and tell them what I had done.

The day Dinky was born I almost lost her. She became distressed and then got stuck as the cord was wrapped around her neck twice. They had to help her out and she was blue, she wasn’t breathing and I didn’t hear her cry. I was on my own and it was one of the scariest moments in my entire life and I never felt so alone. Eventually she cried, which meant she was breathing!

Once she had pinked up a bit I was allowed to hold her. In that moment I fell in love. I couldn’t see how I could ever harm such an innocent baby.

She was a very easy baby, she rarely cried, and I felt I knew what she wanted when she got grizzly.

There I was… a Mum! A day I never thought would come…

 

Fast forward 2 years…

Dinky was walking and even though she didn’t say more than 10 different words 5 of them being 1-5, she was a character and had a giggle that could melt even the hardest of hearts. However she was a handful! At her 2 year health check she seemed to be above her age for most things apart from speech and language and something else which included personal care, which the health visitor said was ok, but she wanted to send dinky to speech and language. I wasn’t all that bothered, maybe she was a late talker.

I did ask about the speech and language as she got older, then just before she started playgroup I got a drop in flyer, except by this point she was saying so much it was hard to keep her quiet at times! So I didn’t bother.

Fast forward to the start of the blog,

January this year she was identified as having special educational needs by school. I had people telling me she was autistic, and the school saying she wasn’t. February I find out about PDA, which creates the infamous PDA parent ‘lightbulb moment’!

Even when I found out about it, it didn’t instantly change my perception of dinky from average kid, to special needs child.

I think it was a combination of being referred by three different people without saying a word to the special needs group and her being accepted, the DLA award, meeting up with the young boy with PDA and every time I we go to one of the special needs things I am always asked… “ASD?”, that finally made me admit dinky has special needs.

I just never thought I would be a parent, let alone the mum of such a beautiful, intelligent, yet special needs child.

It is a weird realisation and a horrible one as well.

I think most special needs parents go through a kind of grieving process for the childhood they thought their kids would have.

For me personally, I don’t think I am all the way there yet, but I cant pin point why.

I know that dinky struggles, and that she is not a typical 5 year old. She is not reaching her academic potential and that she is unlikely to because of her anxiety. I know that she is likely to struggle socially and does because she is very overpowering and controlling. I know she finds it hard keeping herself in check and she doesn’t fully understand what is going on in the world around her. And I know that I cant have a conversation with her because she doesn’t always understand what I am saying, she wont try at times to understand, and she finds it hard to express herself verbally despite being able to talk the hind legs off a donkey.

I know that all this is down to PDA which is an autism spectrum disorder. All I am waiting on, as Jane put it so perfectly, is ‘for someone with the letters after their name to confirm it’.

Yet here I am wondering if I should press the publish button… But I am because it is a true reflection of how I feel about it all.

So there you have it the biggest thing I never thought I would… is be a parent… a parent of such a wonderful special needs child!

 

A phone call, and dinky is the one up the wall for a change!

This morning started with a lie in! Bliss! With my dad finally realising that screaming and shouting at her wont work, I didn’t have to jump straight out of bed to save her!

Not too long after I got up I received a phone call from someone I admire greatly, Jane Sherwin, author of the blog Pathological Demand Avoidance- an autistic spectrum disorder

(found on my blogs I follow or at http://shiggs55.wordpress.com/ and can normally be found replying to my posts!)

We discussed PDA and how it affected her daughter at dinky’s age. I listened and talked about dinky and school. Again I am told that dinky definitely has PDA. I should really get used to it and, although in my heart of hearts I know she does, it still comes as a little bit of a shock. It is that part of me that is waiting for the confirmation, the part that listens to the things from the school, the part that listens to other people who do not really know her. It is the part in me that always doubts myself.

We had a good natter, and I now have some things to look out for and some advice regarding getting her a statement.

When the call ended, I looked at the time… it was 11.30am!!!!

I had forgotten to print off the forms! Luckily my dad had raced dinky getting dressed. so she was ready to go. I had to make sure I was ready to go and filled in the forms, making sure I had her DLA award letter. I feel the need to constantly prove her entitlement to go on these things. Maybe it is my battling myself again. I feel that without the diagnosis that she isn’t entitled. She is however, so I take the letter.

My dad has dinky half way down the stairs while I grab a drink, some bribery tools, our bus passes and my keys and head out.
Dinky has my dad holding the wrist reins and we set off. I can sense that she is a little off, hopefully she will be ok when we get there.
My dad plays rock, paper, scissors with her on the bus. She starts using her baby two word sentences and he tells her to stop it, to use her words, that she is being silly. I have to whisper to him that it is her anxiety. He doesn’t really understand. I knew he didn’t read the PDA booklet! Honestly!

We get there and we have to wait at reception, the till has one of those sticky fuzzy things attached to it. So dinky is pulling my dad along by the wrist rein and jumps up to grab it saying “fuzzy, fuzzy”. Again my dad tells her off and is angry at her for using baby talk. I shoot him a look and he stops.

We go into register her for the afternoon and she gets all hyper and looks about ready to bolt. Once we get the paperwork done we head for the bouncy castle. She is straight on! She spends a lot of time on the bouncy castle. I tempt her into the trampoline. She gets on and the coach is trying to get her to jump on the +. Of course Dinky doesn’t. She jumps around the +, falls on it, runs around it, anything but jump on it. When the coach pushes, dinky runs to a different trampoline, and tries to play ‘catch me if you can!’ My dad starts to play it with her I on the other hand distract her down. I manage to get her off and she says she wants to try climbing.

Cool, I loved climbing as a kid. We took her over. I laughed at their from and told him that dinky wasn’t capable of ensuring she remains safe, she wasn’t capable of ensuring the safety of others and she certainly wouldn’t be able to minimise risk by being aware of her surroundings! Once that was out of the way they said we would have to wait. Dinky doesn’t do waiting. She is unable to contain herself. So my dad takes her on his shoulders for a short walk until they are ready. Even when they are ready she cant go on straight away. She puts the helmet on and then  runs around. I get her to one place until the instructor is ready for her. Once he is ready we make our way over. Dinky is pulling the ropes, and not paying the slightest bit of attention to the rules she s being told. The guy said “don’t touch the metal bits”. So she touched the nearest metal bit! Once ready to climb she does ok. That is until she is about 10 feet up and says she wants to come down. Then she agrees to give it another go. Again she doesn’t go up to the top and once down says she wants to go back to the bouncy castle.
So we go back.
She plays on the bouncy castle again, then we have a little go at football, followed by art.

Now dinky is not a big art lover, but if she is told she can do what she wants, she is away.

She put a very large blue t-shirt on and grabbed the small acrylic paint tubes. She squirts one after another on the page. I tell her no. At the rate she was going there would be none left! The guy supervising the art came over and told me not to worry, to let her do what ever felt right to her. So I left her to it. She squeezed all these tubes of paint out and mixed all the colours. The guy said she was very smart. He said “ASD?”. I get fed up of trying to explain that we are waiting so I just say yes. He says the squeezing is obviously a sensory thing and so is the feel of paint on her fingers, as she spreads the thick lines of paint over the page with her hands. Most of Dinky’s paintings are hand prints and paint soaked paper. This doesn’t really bother me too much. It is nice to know that she gets something from it.
The guy asks for my email, he said he was going to send me details of other sensory art sessions coming up. Cool! If dinky enjoys it, she is happy, I am happy.

More bouncing on the bouncy castle.

By the time it was time to go she seemed to be more relaxed.

On the way home, she played rock paper scissors again. Then my dad asked me why I said yes to ASD when I think Dinky has PDA. I looked at him and said, they are one in the same. He looked really puzzled.

He had another race with dinky at home after dinner, he challenged her to get ready for bed in the time it took to make his tea.

She was ready in 90 seconds!

he then said that she had better get to bed as she has school tomorrow. She went off on one. She said she didn’t want to go to bed, she said she wanted a snack and then started slamming the door to the living room. She was throwing things around and muttering things, but I couldn’t make out what she was saying. She got on the stairs and started spitting. I ignored it. After a few minutes of her jumping on the stairs I offered her a cuddle. She had a quick hug and then went up.

She came down every 15 minutes asking for one thing or another. Thankfully she went to sleep earlier than she had at any other time in the last week! Not by much, but she was asleep at 9.30pm while I was writing this.

I am not looking forward to the school run, and I plan on having a very serious chat about how they handle Dinky at school because she wasn’t like this at her old school.

I have to get this sorted, and soon.

The penny drops and dinky is very anxious today…

Those of you who may have read Sunday’s post will know that my Dad was more than useless during Dinky’s meltdown at the end of half term.

I think the biggest problems were that:

  1. He had never seen her attack me like that. He had seen her refuse to budge from outside the local shops, but not attacking like she did.
  2. He was sceptical of PDA, and to be fair I don’t blame him really, it would be nice for him to have faith in me and my judgement. But PDA isn’t widely recognised. He also didn’t take the time to read the info I gave him.
  3. He didn’t want to believe there was an issue.

Today he came over in the afternoon, Dinky was in her room watching Netflix and playing (jumping on her bed). Every time she came down it seemed she was easy to ‘set off’. My dad actually reacted differently and helped her understand something she had done rather than punish her!

It was quite funny actually.

My dad had brought a pack of 3 chocolates, 1 for each of us. Dinky had come down to greet him, grabbed 2 packets and run off upstairs. By the time we’d realised what she had done it was too late. She had eaten both packets! My dad said ” you have eaten mummy’s buttons”. She didn’t look bothered by what he had said.

He asked her to come down and he showed her the packet. He showed her that there were supposed to be 3 in there. He asked her to count how many people were in the room. She counted 3. So how many were each of us going to have? 1…. Then it hit her that she had taken mine, which meant I didn’t have any. (I wasn’t bothered, but it is a good lesson for her to learn). I put on my best sad face, because unless you genuinely look sad or are bleeding you can’t be upset or hurt, according to Dinky. She apologised… then made us both laugh by shrugging her shoulders and saying that we should both share my dad’s buttons! Definitely not daft, and very much a dinky thing to say!

We spent some time talking about dinky. I read him the reply from Jane on my last blog post. (thankfully he is a technophobe so wont be reading this!). It really hit home having someone else say that that is exactly how their PDA daughter was at 5. It confirms I am not crazy.

Dinky spent much of today in her room. She didn’t want to be around anyone. She came down just before dinner and wanted to play angry birds frustration with my dad. It seems to be one of those things that she only does with him. I love listening to them play it, Dinky always manages to win. She seems so happy when she is sending one of his pieces home and she is getting much, much better at taking her turn, and not rushing or banging the pieces. Of course she still does it sometimes, but she realises that it actually ruins the game. I watched as she won the game. I don’t think she should win as much as she does as she was calling him a loser and this is how you create bad losers. Problem is she is too good for my dad and despite him trying he cant seem to win!

I must say though she isn’t like that with me. If she wins she normally shares her victory with me. She also shares my glory when it comes to games of FIFA 13 between my dad and I.

She made me laugh again before bed. My dad went out and she was sitting on the back of the sofa. I was asking her something and she said

“You are testing my patience. My patience does not like to be tested!”

I was gobsmacked! She said she was practising patience. I have no idea what that was about.

It was not until after her bath and she got ready for bed that I worked out what was making her more anxious. She was upstairs watching Netflix on her tablet before bed, or so we thought she was….

She came down with something she had written for my dad. It was the worst piece of writing I had seen from her. I couldn’t make out more than ‘from dinky’ at the end. When she came down a second time I asked her what she had meant. She said that she didn’t want to go to activities at the leisure centre tomorrow. She said there were better things to do at home.

It took a minute for it to click in my head. Of course. Last time I said she was going to activities at the leisure centre I dropped her off and left her, she got the 3 incident reports in the 4 hours she was there. It must have been miserable for her. Poor bubba. So I went upstairs and sat with her on her bed. I told her that it wasn’t the same thing as last time. This is for special kids, and mummy and granddad are staying with her, we were not going to leave. It was going to be something we could do together as a family. She seemed a little happier but still not great. She ended up staying up until 9.30pm.

Sometimes I forget just how much anxiety going out can cause. I don’t want to end up being stuck in for the whole summer holidays with her so I need to reassure her that I wont leave her apart from the trips with her special needs groups which she likes going to.

I have decided to only do the afternoon session, and I have pre warned my dad that any inkling that she is not having fun, or is finding it hard and we are leaving. I feel bad enough making her go to a school that isn’t supporting her needs, without inflicting weekend anxiety on her.
I think for the time being we will have to limit what we do on a weekend so she can recharge from school.

 

These next few weeks are going to be very important for Dinky. I have to make sure I do it all right… and it all starts with the meeting with her teachers next week, then the speech and language team, then the paediatrician, the only thing is she wont understand just how important it all is.

 

I hope I haven’t built up all this anxiety for tomorrow. If she doesn’t want to go I am not going to persuade her. I guess I will only know tomorrow. This is such a massive learning curve, trial and error. The problem is every error has an impact on my baby girl.