Autism in the Family

I'd like to take you on a little journey back in time, twenty seven years to be precise because that's when my first born son arrived in this world. There is nothing so precious as your first born child, even if they do cry all the time and have no clue that night time is for sleeping.

 I took him into a local shop when he was around six months old and the shopkeeper started asking me lots of questions about him. It was then I realised that he was not like other babies. She actually said that six month old babies were cute and smiled a lot, that they liked to play with you and started to sleep better. Nope, not my son, he still liked to cry all day and all night, unless I was walking him around in his pram.

When he was seventeen months old his sister was born and boy was I in for a surprise. This baby slept, I didn't have to hold her all the time I could lie her down in her moses basket and leave her to gurgle. When she was full from her feed she'd drift off to sleep with no problem and not wake up for hours. Perhaps something was wrong with her?

As they grew it became obvious that they had two very different personalities. It was because one was a boy and one a girl, wasn't it? My son was so naughty, all the time, and he never listened.

We had problems at school. he would sit under the table, refuse to go back into school after break time, not listen to the teacher or parrot what she was saying, refuse to write, refuse to read, refuse to eat his lunch, refuse to use the toilet. He was a very naughty boy!

His teacher gave me the number of a child psychologist. How dare she assume something was wrong with my son just because he was naughty. I just had to try harder, make sure he was disciplined more, I know I was soft on him, but his dad was really tough.  I hated it when he played up and his dad was around.

His dad left us when he was nine. It was ok, we could manage.

The school asked me to take him to the GP as they thought he might have ADHD. Pah, they thought every kid had ADHD. My son could sit in front of his N64 for hours on end, he had perfect attention when it was needed.

I took him to the GP who asked lots of questions while my son climbed on the back of my chair like he was climbing Everest and pulled my hair like it was a rope. The GP decided that I wasn't coping very well with my husband leaving and prescribed for me anti-depressants. All the way home my son chanted "you are the crazy one, not me!"

He started secondary school, it didn't go well. His best friend no longer wanted to be his best friend and he didn't want to speak to anyone else, even the teachers. They put him in the Special Needs class which made him worse.

When he was twelve we went to see the psychologist. She asked a millions questions while my son sat eating his trainer.

He was diagnosed with Aspergers Syndrome.

Things got worse at school, not better. Inclusion was heard of then, but their ideas where ridiculous. My son was clever, but because he now had a diagnosis he was put in a class where he was learning the same stuff that six year olds would learn. He objected. I objected. I took him out of school.

He went to a school for kids that didn't fit into any other school. He was supposed to have been there for six months while they integrated him into a regular school. He was there for three and a half years. Then he went to a fantastic special collage which really didn't stretch him academically but gave him the opportunity to try so many new things like glass blowing, basket weaving, engraving and astronomy. It was somewhere for him to be while I tried to figure out what we were going to do next.

He decided himself and went and did an accountancy degree. I'm not sure that he will ever work in accountancy but at least he proved something to himself if no-one else.

And that is the story of my first born son.
I could go into more detail, but as he is an adult now I will respect his privacy. The main reason I wanted to share his story is because of where I am now with Lucy. She is about to go back to school full time. Next year she will going to secondary school. I have the difficult decision to make of what school she will go to. I know that things have probably changed since my son started secondary school fifteen years ago, but have they changed enough? It's something on my mind a lot at the moment and I'm sure I'll be writing a lot more about it while I figure it all out.

One of Those Days

I took Lucy to the GP last week and after initially blaming constipation, he actually listened to me. So he gave Lucy a letter for an x-ray at the hospital. So finally we are going to see if there is anything noticeably wrong internally.

Today the plan was to fetch Lucy from school, give her something to eat and take her to the hospital.

The day started badly, Lucy had a meltdown before school. She did go, I really thought we would be late but we just about made it as they were closing the door.
She was happier when I picked her up but not keen on going to the hospital. I bribed her with a hot dog, but she kept on going on about getting a new DS game.

We got to the hospital to find a queue of cars going into the car park. We drove around for about 20 minutes looking for a space to park, the whole time Lucy was complaining, she felt car sick, she didn't want to go to the hospital, she was not going to get out of the car if we parked outside because it was raining. We had to park outside.

We made it into the hospital but she didn't want to go into the waiting room because it was full. We spoke to someone who told us they couldn't x-ray her at this hospital we'd have to go back to the hospital she usually goes to.

Lucy was happy now. She didn't want to go to the new hospital anyway.

We got back in the car and getting out of the car park was just as much of a nightmare as getting in.

Both our moods declined rapidly and I decided to put off visiting the hospital until tomorrow.

Lucy asked for a new DS game.

stuck in a car park on a horrible wet day :(

Happy New Year!

Lucy went back to school today.
The morning started like any other morning, then when it was time to get dressed I think she thought about feigning some kind of illness, but changed her mind and just confessed that she felt really nervous. I gave her an encouraging chat and she was ok again. No problems going into school, and one very happy little girl when I picked her up at lunch time. I think she's going to be just fine.

We seem to be having an issue with her feet though. She keeps getting blisters, which don't get any better. She had one just before Christmas and I had to take her to the Doctor for some anti-biotics because it became really infected. Then she had one on her toe that bled so much it turned the entire foot of her white sock red, within minutes. They take forever to heal, and often once healed just break up again. I've brought her some expensive shoes which have been properly fitted, so hopefully that will help. Although today, after just one day in her new shoes, she has another new blister.

Another problem is one we don't really talk about much but I think it's time to try and get it sorted again.

When Lucy was a baby she suffered terribly with constipation. This was an ongoing problem throughout her early years and we tried medicating her on the GPs advice. Nothing really worked though so I decided to make sure her diet was healthy and keep giving her plenty of fluids and hope for the best. 

When she was four we were having trouble toilet training her. She had already started nursery and been suspended until she could use the toilet on her own. We finally managed it with her wee, but the poops were another deal altogether.

At six she was assessed for autism and this involved lots of tests and analysing. The psychologist thought that it was probably our parenting skills which were lacking and gave us potty training tips to try with her. The GP gave her more medication for constipation.

At nine we are convinced that this is not a normal problem. She is still incontinent. In fact, she has never actually made it to the toilet.

It's not just constipation, although she does still get constipated at times.

It's not our parenting skills. I have five children, two younger than Lucy, and I've not had a problem like this with any other child.

It could be psychological, it could be physiological.

We don't know, but we do need to know. Lucy is getting older and we cannot risk her soiling herself at school, they would never let her live it down.

We have managed at school so far because when she was much younger it was understandable that a child might have the occasional accident. When she was seven, she managed a whole year of full time school with only one accident. The teacher sent her home believing she was poorly.

When she was eight, she was only at school for a short time, and was attending hospital twice a week, so she managed without an accident.

She is nine now and due to go back to full time school. I cannot see  her getting by without soiling herself.

When she does soil herself she doesn't seem to have any idea how it has happened. She swears that she did not feel it. She gets very upset. We get very upset. I get very fed up of cleaning her up, it's much worse than changing a baby's nappy.

So on Friday I am going to speak to the GP again. I want to know if there is something physically wrong with her and if so, if it can be fixed. If it is psychological then I will ask for help. I'm so hoping that something can be done for her.

Christmas 2014

Last Christmas Lucy had her manipulation early December and was in her first Halo for Christmas. We had hospital appointments every week, including Boxing Day where she had to have a scan.

This year was so different. Lucy was back at school, even though it's only part time at least she was able to take part in the Christmas music concert where she was on the stage with her class playing the ukulele. She decided against going to the school Christmas party because she was afraid that she may get hurt if the kids became a little rowdy.

I treated her to a lovely Classical Christmas concert at Symphony Hall on December 20th. She was great during the first half, but during the interval she spotted the ice cream lady. At £5 each for a small tub I couldn't let her have any (there were four of us and I'd left my card at home so only had what little cash I had in my purse, which I was saving for Mc Donalds afterwards) The lack of ice-cream brought on a sulk, and moan because my poor girl was STARVING! (It was only 3.30pm and she'd had a huge lunch!)

She soon got back into singing along with the Christmas Carols. I think maybe the whole concert was a little too long for her though, because by the end she was cramped up and her knees and ankles where hurting.

Then on 23rd December we went to see the play, The Tiger Who Came to Tea at the Town Hall. Again she was a little moody, but she was fine during the show, she even managed a dance and sing along.

Christmas Eve she went straight to sleep. I think if her sister hadn't been so tired she fell asleep as soon as her head hit the pillow, then Lucy may have kept her awake talking for a while. She didn't wake her though and was soon sleeping soundly herself. Right up until 5.30am!

She loved opening her presents, but as soon as she was done she was on the PC playing Elsword, her latest game addiction. She has been awkward to buy for this year, no Christmas list, no yelling at adverts 'Can I have that' no telling Father Christmas what she wanted..it was a secret even from the big man himself. There was one Pokemon toy she had shown an interest in one day when we were shopping, I went back to buy it.

During the day she played with the Pokemon toy with her big brother for about 1/2 hour and Jenga with her sister for about 20 mins. She played with her little brother's playdough for a little while and she read one of her new books for around an hour. Everything else is still untouched, even her selection boxes and chocolate snowman.

Now, she is waiting to go back to school because she is bored!

Migraine

Lucy has had a migraine before, and I am a regular sufferer of migraines so we are pretty used to them in our house. This week, however, has been a little scary to say the least.

First up, Lucy's little brother was poorly. Then Lucy got sick too. She was starting to feel better when she had a really bad night complaining of ear ache. In the morning she didn't want to move so I let her lie on the sofa with a blanket all day and she just drifted in and out of sleep. I kept her topped up with fluids and regular doses of Calpol.

She ate little throughout the day and was very weak by bedtime. I figured that as she had slept for most of the day she would be awake all night, but she wasn't. She woke up early though, about 4.30am and sent her sister in to fetch me. (she still has trouble getting out of bed, particularly if she's not feeling well)

She was hot and complaining of headache. I took her temperature but it was 37.5 so high but not too high. I gave her Calpol and a my cold band for her forehead. She went back to sleep on the sofa. It was obvious to me that she had a migraine, but it didn't seem to be improving so I started to worry. I gave her one of those migraine pads but she said it hurt. I think maybe her wounds, although healed, may be a little too sensitive still.

As she was so poorly I began to worry that maybe it was meningitis. It's always wise to be cautious. So I started the checklist. She had been sick, but had recovered. She was hot but not feverish, her hands and feet were not cold. She was drowsy, had barely been awake in 36 hours. She was confused and irritable, she had a pounding headache, she was sensitive to bright lights (but she is often anyway) She did not have any type of rash or blotchy skin.

Then came the neck test...can you put your chin to your neck...Lucy can't do that anyway since the fixation. Does your neck feel stiff...mmm, yes all the time, is there any pain in your neck..yes, all the time. This is one of the first things you check when testing for meningitis and I can't do this with Lucy.

So, I went with my gut instincts and decided that because she wasn't feverish then it wasn't meningitis. Stop panicking and just keep caring for her.

I trusted my instincts but still had moments of doubt, maybe I should have taken her to A&E. There was another sleepless night ahead for me while I checked on her every hour, taking her temperature each time and being prepared to change my instincts at any sign of fever. She slept on like a baby.

Then she woke up and said she felt better. She has been a bit sensitive all day, just like I am when I am recovering from a migraine. It was a migraine, a really bad one. I know how horrible they are and really feel for her....but thank heaven my instincts were right.

1 Year Since the First Halo

This time last year Lucy was in hospital waiting to have her manipulation and halo fitted. We had no idea what to expect and neither did she. I really didn't think that they would go  ahead with it, the pictures I'd seen looked barbaric and I couldn't imagine my little girl like that.

Then we went to pick her up from theatre and this is what greeted us.

We were horrified, none more so that Lucy herself who immediately tried to pull it off. It was most distressing. We did get used to it though. In just  few days she was up and moving around, and five days later she went home from hospital. She was in the halo for 14 weeks in total and we did get used to it. We had no choice really.

I started this blog because having to face this was such a big thing I thought it would be nice to share our experiences and let others know that it can be done, it's not all bad. Of course it would have been nice if it had worked, but sadly as soon as it was removed, Lucy's neck bent again. That was heartbreaking.

We didn't give up though, we couldn't really. Just three months after having it removed Lucy was back having it put on again. This time though she'd been fixed with a plate, screws and bone graft. The second time the halo was on for only six weeks and Lucy took it in her stride. This time it worked and now my little girl is fixed. She only has 50 percent movement in her neck but she copes great.

We are taking a break for now but will soon be chasing up our appointment with the rheumatologist. We want to know why this happened and if similar injuries can be prevented in the future.

We also need to sort out her knee problems, although I'm not hopeful as it's something she's suffered with since birth and has had no help with so far.

Finally, I need to sort out a special needs statement before she heads on up to secondary school. I really don't think she will manage otherwise.

My little zebra has a long journey ahead of her.

Back to School

Today, after being off sick for eleven months, Lucy went back to school.

She's now in year five. She only spent eight weeks in year four. She was already poorly with her neck when she started, her problems had started at the beginning of the summer holidays and she'd already had one spell in hospital and was visiting weekly for physio therapy.

Then early December 2013 she went into hospital again for a manipulation and was first fitted with the dreaded halo. 

She was provided with a home tutor, who has been lovely, and has kept up with the same work her former classmates were doing.

The halo was removed in March, but it hadn't worked.

In June Lucy was given surgery and her neck is now held together with metal plates and pins, and a bone graft. Again, the halo returned.

Just before her birthday in August the halo was removed again and we had our little girl back. She can now hold up her head by herself, although she has lost fifty percent of movement in it.

After talking with the school we came up with a plan to ease her back in gently, so she's going three mornings this week and if that goes ok she'll do five mornings next week. When she is ready she will go back full time.

This morning was very emotional. She was really scared and cried so much. None of my children have ever cried to go to school, even when they first started, so it was also really difficult for me. She still went though. We met a little girl who remembered her in the playground and then her teacher and everyone was really nice. When I picked her up just before lunch she was a lot happier.

I am so very very proud of my little girl. She didn't have to go back, she could have stayed with her home tutor until next year at least. She was very brave. She has always been brave. She's a true Star!