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Autism in Girls - A Fathers Story

By:Ian
Date: Mon,21 Jul 2008
Submitter:Ian
Views:6281

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The majority of autism cases I have read by parents of children with autism seem to be mainly about boys so I thought id share my experiences regarding my daughter Nieve who is Four. Nieve's birth was very natural and for all tense and purposes was going very well. We were at home when the contractions started getting more and more frequent so we called the mid wife who turned up quite promptly. Because everything was going so well the mid wife was encouraging us to have a natural home birth but because my wife was in a lot of pain and the TENS machine wasn't doing anything to relieve her pain, we pressed ahead to go to the hospital instead, a decision that we would be forever grateful for. The mid wife left before us, making her way to the hospital in her own car, we took a slightly different route as we knew a quicker way. We turned up at the hospital expecting the mid wife to be either already there or slightly behind us. We waited for about ten minutes in the car park but she still hadn't turned up so we decided to go inside and get help. A nurse escorted us to the maternity unit where we patiently waited for our mid wife in one of the natural delivery suites, a beautifully decorated room to help relax mother and baby during child birth. We waited in there for at least an hour but still no sign of the mid wife, Laura was now very close to going into the final stages of labour so we were quite anxious and worried for the missing mid wife. After about an hour she turned up, panicked and very sorry. Her car had broken down due to a flat tyre, She had to call her out husband on foot to fix it up. Looking back I believe it may have been the rose bush on our front drive that had caused the puncture. Anyway, with the mid wife now safely in the room and 3 hours further down the line Nieve was starting to push her way into the world. Everything was going really well, Nieve finally popped into the world and into the hands of the mid wife just after 3am in the morning. But as she came out a flood of Meconium came out after her, and worse still she wasn't breathing. Nieve was rushed outside to be given oxygen, at that point we thought it was a routine measure. It wasn't until I was invited to visit the special care baby unit and seeing Nieve in an incubator with all these machines connected to her that the enormity of the situation set in. Basically due to reasons not quite clear at the time she had passed her first stools inside which is a thick tar like substance known as Meconium, as she was born she breathed in a large amount of this substance which filled up her lungs, so as the cord was cut she had no way of breathing in oxygen. Nieve was apparently without oxygen for over 3 minutes. She spent the next 7 days in intensive care where the doctors were clearing out her lungs, a machine was also connected to her to help aid her breathing.

With all this going on we also learnt that she was also fighting an infection called group B streptococcus that had just been spotted. It's sound likely that this infection may have caused the stress during her birth necessary for her passing her first stools inside the womb. She was also given a plalett transfusion to help fight the bacteria. On day seven she started to make big improvements in her health, finally coming off the c-pap machine and then being moved into the high dependency unit which was a sure sign that things were getting better. She remained in there for a further week, the peditriation on her rounds did make clear to us that because of the lack of oxygen Nieve may have learning difficulties for the rest of her life. At this point we were just grateful that she was still alive, if we had been confronted with the same situation via a home birth, Nieve definitely would not be here today. Whilst Nieve was going through all this in the hospital she looked like a perfectly healthy baby, 7lb 14 ounces and quite tall, not the usual look of the other baby's in the special care ward. One of the things that I noticed from very early on was she didn't really make a fuss or want any of our attention, she didn't make any eye contact or take much notice of the people around her. I put these fears to back of my mind and just concentrated getting her fit so we could take her home. We had to get her body weight and other factors above a certain threshold before being allowed to take her home. We finally achieved this after 2 weeks in special care.

After going through such a stressful birth and knowing what the mid wife had said about Nieve's development, we became extremely focused on her milestones. Coincidencely my wife's best friend delivered her daughter successfully the day before in the same hospital so we were able to visit each other for support. This also meant that we had some very good benchmarks to

compare Nieve's development to.
Nieve also has a cousin who is 10 months older than her so we knew roughly what to look out for to see if her development was on track.

Nieve was now settled at home and things seemed to be ok, she still didn't make much eye contact but it was very early days, we just assumed she was a brave little girl who wasn't very needy. In some ways she was a dream baby, always slept through the night, never really moaned or had tantrums, just very easy. As she got a little bit older and was nearing one, she still didn't make much eye contact or make any attempt at speech, this carried on until she was almost two an half with still extremely limited speech, mainly saying mummy or daddy but not always using them in the correct context. At around this age Nieve was given a formal diagnosis of autism, in the middle of the spectrum. From Christmas 2008 she finally started to make quite big leaps in her development, her speech started to improve albeit mainly based on nouns as these are concrete words, things like, house, car, water, names for all her favourite toys, mummy, daddy. In between words like "to, going, under" are very abstract and her brain doesn't recognise them or understand them. She has now started to put two words together for some scenarios such as, "hello car", "hello sky". If I say come on Nieve lets get you dressed and put your trousers on she wouldn't necessarily understand that so I would say, come on "feet in" , and she would say "Hello, feet in". Everything becomes a tangible object even if it's not.

She is an extremely happy little girl and can be quite cheeky, even though we can't have a proper conversation with her as she simply doesn't understand complex sentences she can communicate with the nouns that she knows and by moving us or pushing us to objects that she wants. One of the funniest things she did recently (Aged 4) whilst we were out at the park, a little girl was riding her new push bike a little too fast and Subsequently fell off. Nieve walked over and and pulled a really sad face and said "ooohhh, poor bike" ignoring the cries of the little girl who was being pacified by her mother. The little girl was fine but to Nieve the bike was a far more important object than the little girl. She was routinely saying hello to cars, grass on people's drives, even notice when somebody's car was not there and say "Poor car". Despite all this I find her condition absolutely fascinating, she just seems to appreciate things and objects that I would never have noticed before. As we walk her home in her buggy from nursery she points to any house with a triangle feature of some description and shouts "Triangle, Triangle", "Triangle". Other people think we're nuts but she is having a wonderful time pointing them out. Since the age of 3-4 years her eye contact has become extremely good, she will now even seek me out to play and include me in games, when I come home from work she will say "Hello, Daddy" and then walk off, where before I didn't exist. So even though there is no abstract communication other than concrete nouns we are now understanding each other, although only limited and I feel a deep connection and friendship that wasn't possible before. Some people find it hard to believe that Nieve is autistic because she looks so normal and in isolation you wouldn't really notice it but when you put her side to side with her peers she is still extremely different. Where other children are talking and discussing characters on the telly, Nieve is happy spinning round in circles or repeatedly playing with a puzzle or sitting playing with water, something she could do forever if you didn't stop her. Anyway she starts infant school this year, she has a dedicated helper so it will be interesting how she develops further in a her new environment. Nieve has been attending a main stream nursery where all the children have been absolutely wonderful to her with some taking a special shine to her, the nursery has really learnt through her condition which has been extremely uplifting being that Nieve is their first autistic child. They have all built a very special bond with her and told us how extremely grateful they are having had the opportunity to work with her, they are truly sad to let her go. In summing up, although Nieve had the traumatic birth and this quite possibly could have caused her condition, I wouldn't change her for the world now, she is such a happy amazing little girl and the way she see's the world and appreciates nature has taught me to see things in a completely different way. Autism may be a disability but also it just might be a different way of being and from what I have seen in Nieve and other children with autism is that the world would be a far better place if we were all like them.
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Comments

Ian said:

Thank you Mary I truly feel this way too. I often feel like the student and as I'm sure you do to.
Blessings
Ian
Mon,06 Jul 2009,08:37:56 GMT

Mary Ann Harrington said:

I just read your article about your daughter. I can feel the love, respect, acceptance, and awe you have for Nieve. She will teach you many things as you are already meeting her half way, by appreciating her gifts rather than dwelling on her short comings. You are very fortunate to have each other! Remember to talk to her at a soul level. I believe Nieve will comprehend


Thank you for sharing,
Mary Ann
Mon,06 Jul 2009,05:50:24 GMT

susan bravery said:

hello ian,
i am glad nieve enjoyed the snow,it is wonderful to watch there faces i must admit.but like you said it did melt very quickly.definetly not enough to make a snow man,yes though plenty of time for that.yes i have heard many a clever person has the autistic traits did you know even einstein was supposed to be autistic and look what he accomplished.i am not saying kieron is like ths=at but i suppose you never know do you what they are capable of until they are older.
i do hope though what ever kieron manages to do he will be able to cope with life and whatever it does have to bring.the same for little nieve with you and your wife i am sure.
from sue
Fri,28 Nov 2008,04:51:56 GMT

Ian said:

Sounds wonderful. Did you know that a high percentage of computer experts in Silicon Valley are on the autistic spectrum. I'm sure he will do well with things like that. What most kids find boring they marvel at. Nieve was so excited about the snow, made me excited just to watch her sense of wonder. Shame it all melted so quickly. Plenty of time for more. Thanks Ian
Thu,27 Nov 2008,15:18:53 GMT

susan bravery said:

hello ian,
kieron had a lovely day,he loved his pressies and has enjoyed them like i knew he would.he has always been fasinated with wirers,so i brought him a toy from argos called hot wires.it is basically circuit board set ups,there are 112 things to do with it,like door bells,helicoter launching and laods more.you have to follow a book to set the things up and they are run by batteries but by the second day he was setting the curcuits up without the book.well he is not good at reading and writing but what a memory,ah! he also has a atm money box and loves that aswell plus lots more.what a day it snowed in the morning that made him very pleased although of course not enough to make a snowman :0)
well i could tell you loads more but i dont always want to be a nuisance everytime so i will stop now love to your family and you.i hope nieve has a brill birthday too.also i am glad you feel the mantra is wonderful.when you get more time please let me know just how good and what it entails etc.from sue
Wed,26 Nov 2008,22:21:52 GMT

Ian said:

Have a lovely day won't you both. That is a wonderful mantra.

"treat everyone like you would like to be treated"

The positive thing about autism is that they are like this anyway without even trying......They really are our future.
I don't think Nieve knows it's her birthday yet but I know she will be really excited on the day when she opens her present. She is infatuated with the Backyardigans, I guess that's quite a "normal" thing anyway but it's lovely to see.

Thanks
Ian
Fri,21 Nov 2008,07:56:04 GMT

susan bravery said:

hello ian,
dont worry i wont write another book this time,lol.i just want to say thank you for taking the time to answer me.my son kieron is 10 on sunday and i have brought him some presents that i know he will like,i think i am looking forward to him having a happy day now.he does understand that his birthday is coming now i have been counting the days down with him using my fingers for the last week.i dont know if he knows what to expect though really but it will just be lovely to have some special family time.
the photo thing is something that i carry through life with me day to day.one of my sayings is treat everyone like you would like to be treated but many people who treat you badly should have more thought.so i dont lower myself only think it is better to stay away.
i hope you enjoy your merkerba meditation,you will have to let people know if you gain anything from it.
well goodnight for now ian.from sue
p.s. i am very pleased to have found this site.
Thu,20 Nov 2008,23:58:24 GMT

Ian said:

Phew, that was very close. I know I must of aged my parents quite considerably for things I got up to as a child. Karma is alive and kicking. lol. Thanks for reminding of photo thing, I have been working through the Merkerba meditation quite intensly lately, but I will give that ago as well. Thanks very much, Ian
Mon,17 Nov 2008,08:48:07 GMT

susan bravery said:

hello ian and family,thankyou for your reply.i bet you did age at least 4 years that day.when dear little neive jumped in the deep end,gosh what a shock.i have had some moments with kieron too.thats probably why i look old for my age.well that and the cancer i have had all i could think of is what will happen to my boys.well luckily i am in remmission now and hope it stays that way.i mean i cant tell if it will come back but it might not ever come back either.i will check your email.yes i to enjoyed talking to you at st matthews the other evening.i was wondering if you thought about what i had said about the photo of yourself and putting into action what i had said.i will have a look at the essex site thank you for sending me the www site.my time with kieron that scared me was getting on a train to go to southend.he had always liked seeing the trains go by.so oneday i thought i would go to southend on one instead of a bus.well we got there the train arrived and kieron started to cry,the door was opened we got on the train.he did not like noise and he went and jump off just as the doors were going to shut,i jumped out and grabbed him and pulled him back on the train.all the way to southend he screamed.it was not a nice experience for him at all.needless to say we got the bus home.but all i could think was what would have happened to him while i was on the train and if he got left by himself on the platform until i got back. i cant imagine and just dont want to ever.as i dont believe he would have stayed on the platform he did not like the sound of the train.there is also a road outside so it would have been dangerous.i think i aged that day too.anyway i will finish for now as i am sure you dont want me to write you another book.take care and be happy :0)
Fri,14 Nov 2008,20:26:40 GMT

Ian said:

Hi Sue,

Thanks for taking the time to add such a long comment, it's wonderful to hear other people's experiences. Nieve loves water so much, just like Kieron. It has some a wonderful magical look to it doesn't it. We went on holiday this year to Ibiza where we spent two weeks in a Thompson resort. Nieve made a beeline straight to the swimming pool after I turned my back for two seconds. She ran and jumped straight in the deep end without any arm bands. I have never run and jumped into water as quick as I did that day. Suffice to say she remained in the little pool from that point onwards. In a way we were glad for the experience to teach her that although it's magical it does need to be treated with respect....I aged about 4 years in one day on that holiday.!!!! LOL. By the way it was great talking to you at St. Matthews on Friday. I did send you reply regarding events on this site but your spam filter may have eaten the email.
Please visit the Essex version of the site at : www.EssexSpiritGuide.co.uk where you can view all local events and information.

Thanks
Ian
Wed,12 Nov 2008,11:42:54 GMT

susan bravery said:

hello ian,laura and nieve,i was very taken aback by this your artical about your wonderful daughter nieve.i myself have a son called kieron who has been diagnosed with childhood autism.he did go his full length of pregnancy too.i to had a baby that never cried and went through the night from the first night,i remember waking up thinking has he passed as my two other children had cried for the first few weeks of birth.well he did not cry in the day or at night,i did just think he was a very contented baby.then at around 3 weeks old i took him to hospital because i did not think he seemed well.he had caught some sort of infection and had a bad temperature and was floppy.they weigh him and he had not put much weight on at all.i was very worried about him,i decided to feed him at least every 3 hours in order for him to gain more weight.i was so very worried.well after a short time he gained weight well.i carried on the same for along while.later my health visitor noticed he did not seem to be developing as quickly as he should.she said she was going to put me in touch with a doctor.i remember feeding him in his high chair trying to get him to say dada but he just laughed at me.then it was brought to my attention that he did not have much eye contact.well i then had noticed it myself,but not knowing what this meant.time went by and i was told to take him to this special nursery for autistic children.i felt very sad as he did not really talk and mix with the other children.i started to want to look up about autism and thats just what i did.i learnt that there were different types and differnt levels of just how bad it could be.it had been said to me that he probably had aspergers syndrome.so i read up about this and it did sound like kieron.it was strange his nursery wanted me to learn the makaton sign language,so i tried but i then relised this was not needed as kieron had his own sign and way of getting me to understand what he wanted.i then had to move away and i lost all the doctors that were previously treating kieron.i had a battle on my hands to get him the right help again.i remember he one day came out with the word mum and i could not believe it as kieron was already over 2 and a half years old.well i just cuddled him and cried with happiness as it was such a wonderful feeling.but that was kierons only word for a while.he had a blue beaker for milk and a green beaker for orange squash.i remember giving him orange in the blue beaker and he got very upset and through the beaker,i wondered what was wrong at first then i remembered reading how autistic children like routine,things the same,things to be kept routinely.so i made him a drink of orange in his green beaker and he was ok with that.i had only kept his beaker one for one thing one for the other so drinks did not curdle.well i learnt an important lesson that day and many many more to come.kieron liked to suck his thumb and he used to like to hold a small toy by its label in the same hand.oneday i got him a small toy and cut the label off to see what would happen.well he was not interested in that toy at all.he later saw a speach therapist and various other doctors and people.i had learnt to understand kieron over the years.we had a very close relationship and eye contact was between us sometimes.he was heading for school age and his volcabulary was very slight compare to other children his own age,i felt worried how he would cope at school.i for months tried to teach him that he was kieron,as he did not seem to understand who he was.i used to invite other children to play with him,but when i watched they were usually playing separately.he started school and he found it quite a struggle with education.the school had noticed he was falling behind.i had noticed they could not give him what he needed,they said he was on school action plus and this would be enough.well i at home taught him to write his name.but he could not write anything on his own at all apart from his name.he left that school in his 2nd year juniours still not writing much more than his name.he did not read either.but he was talking alot more.well he goes to a special school now and his learning has picked up and he seems to have gained in confidence too a great deal.he is 10 this month and i too would not swap him for the world.he also has his obsesions they when he was young would be water,anything with a plug on it.(although he did not like hoovers hairdryer or anything that made a noise like that)now he likes water still,but it is padlocks with keys,he is also a squirrel likes to pick up nuts,bolts and many other things from the streets where he put them in his tool box.you would have never seen so many things picked up from the street in your life.but they are kierons little treasures and he loves what he collects.he is such a wonderful lille boy that i feel blessed to be his mum.he has taught me so much about him and made me look at life very differently too.i do see the beautiful things in life now,unlike many other adults,too.i do appreciate many things others dont because of him too.(why a child might be scared,withdrawn,playing up or something else.kieron has opened my eyes.i must say i do agree with another of your comments that if everyone in the world were to be like them what a wonderful place the world would be.well i have had many strange,funny moments,and learning curbs myself.e.g like the time kieron wanted to kiss the bus driver because he gave him the ticket.that i could never say life is boring but it is wonderful with him and his 2 older brothers.sorry to go on.lots of love to you and your family from sue bravery xx xx xx
Wed,12 Nov 2008,00:07:38 GMT

Ian said:

Hi Angela,

Thanks for your comments. We have always tried to treat Nieve as a special gift and honored her condition rather than see the condition as a disability, over time she has gained so much confidence and really come out of her shell. She has really surprised us. It's worth getting a statement if possible for Morven so that she gets the extra help with her schooling. I do hope you're getting the support you need from your local authorities. If you need any advice please feel free to contact me through this site.
Best wishes
Ian
Mon,22 Sep 2008,20:32:31 GMT

Angela Hamilton said:

Thank you for a lovely uplifting story. My daughter Morven will be 4 on Fri is in the process of being diagnosed with Autism. You make it sound such a positive thing. I hope when we get the diagnosis( I think we will) I feel like you. Thanks Angela
Mon,22 Sep 2008,16:56:30 GMT

Terri said:

What a wonderful thing to share with us Ian, thank you!
Mon,21 Jul 2008,16:02:14 GMT
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