Genetics Counselling- Stage 1

After we saw the psychiatrist with Max a few months ago and he took a detailed history, he asked if we would like to be referred to genetics.  With every professional we’ve seen over the last year making some comment about my X chromosome we decided to be referred.  We had the appointment a couple of weeks ago with a lovely woman who drew a family tree, took a very detailed history and then explained the options available to us.  I told her about the boys births and how they weren’t textbook which appeared to make no difference really to what she was saying, although her specialty is genetics so why would it?  It seems that it IS my chromosome that has affected the kids, and may have caused miscarriage etc etc but it’s not conclusive………yet!

As a parent I feel guilty anyway, I think it’s part of being  parent anyway but now I feel really crap.  I know logically there’s nothing I could have done differently, no one had mentioned the X factor and I was told there was little risk as I was with a new partner.  But I still feel it’s my fault.  So I had a bit of a wallow for a bit, but then that doesn’t help anyone so what will help?  Well they took a blood sample off Max to run DNA and to check for 66 X chromosome abnormalities- technology has advanced, although they have discounted fragile X.  He was really good giving blood but then I was waving a Mars bar at him for when he was finished.  The geneticist also asked if we wanted to take part in the 100,000 genome study which maps as much as they can at the moment and then more as technology gets better.  It shows like cancer markers and stuff, so we will have to have a session of counselling before signing for that.  They will also compare it to Max’s for now to see if there are any blatant defects.  I’m not explaining it very well am I but there was a lot of information and I’m not remotely scientific.

I know there’s no cure or nothing I can do for my family in the immediate future and the tests may come back with a definitive “yeah, you broke your kids!” which I will have to deal with but it may help other families.  It may help my daughters make informed decisions when it comes to them having children.  So after thinking about it, we’ve decided that if they want us on the study they can have us.  I don’t really like the idea of people having my DNA, I obviously read too many books where people have been set up by the cops, but I feel I should do it.  I am not one for eradication and making perfect humans (eugenics?) but I am for education and informed decisions.  Maybe we can narrow down some diseases and syndromes and find better ways to educate and understand those affected.  I don’t think we should try to eradicate people who are different- where would the world be without those who think differently?  It would be nice though to make life easier for those who are different.

As I get older I realise I don’t know anything.  I have my core values and morals but I find I fluctuate about other stuff so much.  There’s no black or white in so much of life, it’s all shades of grey.  I find that my feelings come second to what I believe is best for my family.  I think, honestly, that if it was up to me I wouldn’t go down the family genetic route but I have to think about everyone.  I love my boys, but it’s hard and personally I wouldn’t not have them in my life (oh that’s bad writing).  If I’d known, I would have had them anyway, because there is so much good too, so much love and you get to share a different world, but it is bloody hard work- not least educating people who have no clue how to treat someone different.  If my daughters don’t want to take the chance of living this life again with their own kids then that is up to them and I fully support them.  Maybe we will get some answers, maybe we won’t but I will always try to make my children’s lives better- all four of them.  Information is never a bad thing, is it?

 

xx

 

First day at nursery school

On Monday, my baby girl started nursery school.  She has gone to a private nursery since she was 18 months but she calls this “nursery school”.  We call it foundation stage 1.  She is in full time eating dinner there and having to wear a “nooniform”. She has been so excited to start, going to her big brothers school.  She has dropped him off and picked him up with me over the last year so has known the teachers and some of the kids already.  The foundation stages, 1 and 2, are in the same unit so some of the children from last year are still there which made her happier.

She had a home visit from Mrs B and Mrs H where we did some paperwork and they played and talked to her.  For someone usually quite shy they brought her out of herself and got her talking.  On her first day she said “I am going to talk to my teachers, I won’t be shy” which was my big worry.  And when I took her in Mrs F asked her if she wanted to play play-doh and she said “no I want the sand please” so I was really happy as I thought she might be a people pleaser and just go along and not cause a fuss.  So I felt a bit better leaving her.

I know she’ll blossom, I know she was ready, but I put on her uniform and wanted to cry.  She looked so grown up.  She’s my baby, sandwiched between two losses and has been my little buddy for the last year, we have done loads together and I find I’m a bit lost without her.  I know I will fill the time but shopping and gardening won’t be the same without her.  Letting her go, knowing she’s my last was harder than I thought it would be and I am a bit sad but I know in my heart it’s right for her.  It’s not about me, it’s about what my beautiful little girl needs to fly!

She came running out of school yesterday and up into my arms babbling away about her day, and her dinner, and her friends and painting which is wonderful for me after having 2 non verbal kids and home school diaries in which to communicate.  She is just so happy, carrying her book bag, showing me her hanging-up-her-coat skills (which she loses once she walks through our front door), discussing her paintings in great details and just talking about her new experiences.  She finds wonder in everything. She had to do a booklet “all about me” to take in on her first day, so did a self portrait

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This is her picture of herself.  I think it’s great for a 3 year old, but then I’m biased.

So my baby has taken her first steps into the big world.  My job is to support her and to catch her if she falls, and set her back on her feet.  Right now, I’m looking forward to 3.15pm and getting my big hug and all the day’s news.  Oh and another painting!!

 

xx

Poison- or as I call it, liquid paracetamol

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Max is at respite this weekend- he’s gone to the caravan with his lovely other family. As a treat I thought I would book tickets for the zoo for Saturday for the little ones as an end of summer treat.  I should know better than to book anything.  It’s Popples last week at nursery before she starts nursery school in 2 weeks, Oliver is back on Monday- big year 1!  So on Tuesday I get a phone call from nursery saying Popples isn’t well, running a fever and crying.  She’s not a crier.  And she was ok when I dropped her off.  So I went to pick her up and sure enough she is hot as hell.  Great, last week in nursery and she’s going to miss it.  She has recovered well, don’t know what it was, Calpol a cool and soothe on her head, wrapped up on the sofa, lots of sleep and she’s back to her normal self so she can go in and say goodbye (with cake) on Friday.  Huzzah!  I hear you cry.  But wait, not to be outdone by his sister, Olly comes down with the same thing the next day.  Higher temp, floppy, and not wanting anything- I made the mistake of offering him a drink, and got a tearful wobbler for my trouble.

He let me, after a few minutes of persuasion and showing how I do Popples ears, finally take his temperature  and at just over 39 degrees I knew it was time to poison him.  Well if you saw his reaction, the screaming, thrashing, scratching in self defense you would be forgiven for thinking I was trying to kill him, but it is actually strawberry flavoured liquid paracetamol especially designed for children.  Brings down temperatures, and soothes aches and pains.  It comes with an oral syringe for ease.  Yep so easy.  No mess, just squirt (or dribble) into the mouth and most kids swallow it no problem.  Oliver on the other hand, does not care for the syringe, or teaspoon or juice with it hidden in.  Once you have him in position, legs and arms restricted you can actually get the syringe into his mouth.  Now over the years he has developed various techniques for getting it back out and I thought I had got all angles covered.  Yesterday I checked his mouth and could see nothing so thought it had been swallowed.  Silly me.  Of course he hadn’t, he’d somehow stored it in his throat and when I released him it got sprayed (literally) everywhere.  I’d seen him swallow so don’t know how he’d done it.  It is also the stickiest substance known to man, which is really great when me, him the sofa has been sprayed with the stuff.  Anyway after much sweating, and soothing words and restricted limbs, I managed to get some into him, and his temp did come down.  I also had to ask his dad to pick up another bottle on his way home from work- we buy generic now at half the price.

So he has his favourite dvd’s in a pile and  is sat under the “poorly blanket”.  It’s almost time for the next dose, and I hate it.  I hate that I can’t explain it will make him feel better, I hate that he won’t look at me afterwards, I hate that he runs away shouting “no mummy”.  I hope that he will one day understand, Max took years to understand “much better” but now he does I can dress wounds, give him meds and apply creams to his eczema.  I’m hoping he is well enough for the zoo and well enough for his new term.  His immune system is not as robust as his sisters and the lack of sleep doesn’t help either.  I don’t know if offering a smoothie after his poison is just asking for trouble.  Ah well I like to live dangerously!!  Medicine time- I just hope the neighbours don’t call social services 😉

 

xx

Summer Holidays- week 5 of 6

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Yes we have made it week 5 relatively unscathed.  Uniforms all bought and nearly all labelled just need a pump bag for Popples and I’m done.

To be honest I was dreading the big summer break, 3 kids at home apart from her three sessions at nursery and at first it did not look like it would go well.  The boys are usually out at school or placement so Miss P usually has me to herself during the day.  “You’re my mummy!” has been heard regularly for the first two weeks and I’ve had to explain that I’m everyone’s mummy even Emily’s even though she doesn’t live with us anymore.  For a just turned 3 year old this concept has been hard to grasp but we have persevered and there’s no more griping, as everyone gets mummy time and everyone gets daddy time as well as all time together.  The sharing of toys has also been tricky with many arguments turning into fisticuffs.  For a tiny person, Popples can certainly hold her own.  “That’s not nice.  Let’s share. No fighting. There’s enough for everyone”- honestly got sick of the sound of my own voice!  When it comes to sharing food, no one has a problem everything is distributed fairly with no complaining or hogging.

I also decided this summer to give everyone a break from hard learning.  The speech therapist, Vicki, has discussed with me how Oliver takes time to process things and should be given time when the pressure is off to just kind of make sense of things. So we went back to mainly play based learning, taking turns, colours, numbers letters- etc. Still learning but not at a desk with a pencil and work sheets.  I can not believe the progress they have made.  My non verbal Oliver has not shut up!  We bought Sing! for them and Secret life of pets a while ago and these have been great for both of them.  Oliver made a stage and microphone out of stickle bricks and was singing proper words to proper songs  When he wants to watch it he comes up to me and says “shake it off  shake it off” which is what the pigs sing “piggy power”.  His negatives have improved but Vicki said that’s usual as he is more motivated to declare his objection to something “no more bed time” “no more car” “leave me alone”  but he has also started verbally requesting things “more juice. Want crisps. breakfast now” and telling me just things “bumped head. it’s raining”.  Now for a child who had 20 words at best before the summer, well I’m impressed.  But what made me really proud was yesterday and him voluntarily sharing.  They have a set of secret life of pets figures each, just little ones that were about 2 quid a set from ebay and they love them.  Usually they still fight over them but Oliver split them into two piles and then came over to Popples and said “Peppy’s” (he has always called her Peppy) and then when he found another 2 Gidgets in his set he brought her one.  Obviously I then text and told everyone I knew what he’d done- I was so proud!

I think the turning point in their relationship was when it was raining hard the other week. The weather is not great in the summer holidays- it’s like the universe wants to see who’ll go crazy first.  They’d had enough of staying in so I ran them a bath and opened the back door. There was a huge muddy puddle in the border I hadn’t finished planting in and they both dived in running up and down, screaming and laughing, in the pouring rain, getting wet through and muddy head to toe. I’d done the bath so when they came in they were warmed straight away and into warm clothes- last thing we need is poorly!  Now Oliver joins in when we play chasing, obstacle course, racing, and everything.  He was the monster yesterday so put his Gruffalo gloves on (they are like claws) and chased “Peppy” round the garden shouting “Raaaaaahhh!” and attempting to tickle when he caught her.

We have a week and a bit to go before Oliver goes back to school and I’m worried he may lose his speech?  It’s busy at school and he doesn’t have much confidence in his voice yet- he’s only just found it.  But I’m going to put that aside and enjoy what I have right now.  I’ve heard her helping him with his words and I’ve seen him helping her with her confidence in climbing.  Maybe it’s the start of a beautiful relationship, best friends.

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xx

Shoe shopping, dentist and haircut.

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These three things fill me with dread.  We had to go shoe shopping this morning for new school shoes as term starts in 2 weeks.  I called in the eldest, Emily, as helper today much to her delight!  I can’t do it alone, it’s physically impossible.  It started well with Oliver in his major buggy watching Popples get measured and choosing shoes.  She tried on every pair in her size and eventually settled on the ones with “little diamond sparkles”.  So far so good- and the added plus that they were in the sale.

How soon the smiling turned to screams of “no more shoes! No! No! ”  and kicking and using his old shoes to try to smack the lady measuring his feet.  We got a rough size and she brought out a selection.  We chose the no-scuff-toes ones and I had him held close talking calmly to him while they tried to fit them.  It didn’t make much difference, by this time he was sobbing, “no shoes, mummy no shoes”  and everyone is feeling like crap.  She checked them, he tried to do a runner, they fit, she asked did we want to try anymore on. (Ray Liotta face) We went and paid (fifty quid for boys school shoes!) but I couldn’t put him through anymore so we paid and left, but I also told the manager that the girl had done a sterling job considering what Oliver had been like.  I don’t know why shoe shopping is so traumatic, Max used to be the same when he was younger.  I wonder if it’s the invasion of personal space, or the feel of new shoes or just because it’s new shoes.

Haircuts are another traumatic time.  We have a fabulous hairdresser called Helen and she used to do Max’s hair so is used to dealing with customers that wiggle.  We have had a couple of dodgy cuts where she just couldn’t finish due to distress by all involved which meant me nipping in at night time and snipping long bits off.  We have had cuts where she’s been lay on the floor next to him snipping bits off.  She gave me her internet password so I could put you tube on my mobile for him to watch (until he managed to grab it and throw it) and last time we took a dvd portable player with Sing! for him to watch.  Last weeks cut was probably the best yet.  One major wobble, one grabbing scissors, and only had to finish the back on the floor.  I am trying to take him regularly so he gets used to it.  He will now let me chase him with a hairdryer and brush his hair so it’s progress.

The dentist- well she checks his teeth whilst he is on my knee screaming his head off.  That’s after I’ve carried a screaming, writhing child up the stairs to the dentists room.

Some things that cause stress can be avoided or be built up to but these three things can’t be avoided.   He needs shoes, he needs his teeth checked, he needs haircuts.  I am hoping that as he becomes more familiar with the situations things will get calmer and easier.  We talk about things, we role play, we read books and I try to present a calm front.  I don’t know why he feels so strongly about these things, I can guess, but I will always try to make them as painless as possible- even if that means buying the most expensive shoes in the shop!

xx

 

Dealing with “nice”

Now this is a real problem for me.  I never know what to do.  You see after 20 years of dealing with autism it’s not often that I’ve had this experience.  I don’t know when it became acceptable to comment on a person to their face knowing nothing about them.  I have to say I am not too nice when dealing with these people, a part of me knows I should try to educate but when you see me with Max especially, any one can see he is different, so the comments don’t seem like questions just an excuse for someone to try to get one up on us.  “that child needs a good hiding!” and my response “oh have you called the Lancet- I’m sure they’d be thrilled to hear your cure for autism”, “there was no such thing as autism in my day”-“was there always ignorance?”.  I’m not especially proud of my replies but I’m sure I’m not the only autism parent who has to deal with this inane nonsense.  I was shopping with Oliver the other day and we were discussing sausages- I say discussing it was me asking if he wanted blue sausages (chipolata’s) or purple sausages (Cumberland).  It was also 6 am and we’d been up since 3am so I wasn’t in the best of moods anyway but some woman overhearing us says to me “why you giving him a choice? he should eat what he’s given” I just replied we didn’t live in a dictatorship and left it at that. But what makes anyone think that comments are appreciated?  When I was little I was taught “if you have nothing nice to say, say nothing at all.”

This has gone on for years, staring I can cope with, it’s not often you see a 40 odd year old woman dragging a 5 year old round a supermarket by his walking reins while he is on his tummy on the floor making swimming motions with his limbs and I’d probably look at that too.  So I can manage staring and I can manage comments (although admittedly not always nicely).  When people are nice it really throws me off.

It was Oliver’s sports day early July, on the big playground with parents invited so the main gate would be open and with him being a flight risk I was panicking in case he got away from his 1-to-1 so I positioned myself ready for the intercept if he went for it.  He cam out with his classmates, sat with Mrs D- his 1-to-1, and waited.  He was winning the obstacle race- until he stopped to wait for everyone to catch up, he cheated at the egg and spoon but won, then came the space hopper race.  He was more enthusiastic than skilled and was well behind, so I was cheering him on and I stopped to draw breath and I heard a group of other mums shouting his name and encouraging him  He eventually finished to great cheers from parents and school friends alike and the look on his face was pure happiness. I wiped away a tear (hayfever-honest) and when it was all over I went to collect him.  So many parents came up and said how well he’d done, how they/d seen his progress over the year and often a story of their child and mine doing something together.  Yes I was in tears on the way home.  These people don’t know how their simple “didn’t he do well” comments affected me, and made me feel supported.

I was in the quick check out queue once in the supermarket when Max was little and the woman in front kept looking at me then him- I got ready to defend us when she spoke I was deflated “would you like to go before me? My grandson gets bored waiting in queues and my daughter has the same look you have.  I don’t want to pry but is it autism?” We didn’t go in front but we had a chat while we helped each other pack up.

When Oliver was a baby I took him and Max to Morrison’s for a few bits.  We’d been doing well on our walks and shopping trips when suddenly Max went into Meltdown mode.  A staff member from the bakery came over and I thought “uh oh we’re going to be asked to leave” but she crouched in front on the pram and kept Oliver entertained while I dealt with Max.  I couldn’t thank her enough.

So I’m not good in dealing with nice, it turns me to jelly and often makes me cry.  I have also developed a face that I call my ray liotta “goodfellas” face

ray

“He’ll eat it if he’s hungry enough”

“just put him to bed he’ll get the message”

“take some time for yourself”

“He’s just spoilt”

I’m sure you get the picture.  I sent it to my daughter when she text me saying “did you get any sleep last night?” the reply I got “lol. ok do you need some help?”  I think the picture just sums up my reaction to insane statements and questions.  I also think it might be more polite than making pithy comebacks.

I just wish people would think- how would I feel if a stranger commented on my life? before opening their mouths.

 

xx

Stay at home mum

That is my title  I am a stay at home mum.  People try to dress it up like “homemaker” or whatever but I’m a mum.  My husband works full time and we make do with his wage and the pittance I bring in for being a carer.  We’ve looked at the numbers and to be able to pay for childcare and care for Max while I worked – well I couldn’t get a job that pays enough.  It costs us over £80 a week for 15 hours of nursery care for Popples, mainly to socialise her.  Having 2 non verbal brothers we thought it was important to have time to play with her peers and not just be reliant on mummy for company.  She still lacks confidence a little but she has fun with her friends and is ready for Nursery School (FS1) in September.  She is going full time, and a couple of children from her nursery are going too so she’ll have familiar faces.

Anyway, I am getting off topic.  Being a stay at home mum is often thought of as being a soft option, I don’t have the pressures of commutes, deadlines etc etc but on the other side of that I don’t get holidays, time off sick or paid!  My day starts when one of the adorable children I have wakes.  Currently that is Oliver……at 3.30 am……. every morning!  The research suggests that 80% of children with autism have “sleeping difficulties” and how I hoped we were in the 20% this time that didn’t. We aren’t.  So he gets up and has to be wrestled back to bed, often holding me in a death grip in case I think about leaving to get some sleep in my own bed.  Then Popples wakes around half six and immediately starts jabbering on about what we’re going to do today or to ask if I “had a good sleep mummy?” or to talk about yesterday or last week or……you get the picture. Breakfast then getting the little ones dressed.  Oliver is allergic to clothes at the moment which is fun on a school morning where you have to try to get him dressed whilst he is trying to get undressed at the same time and get him into the car (whilst he is writhing in my arms ) and remember book bags etc.  After various drop offs I get a chance for a quick coffee and tidy up before pick up from nursery.  Then its a couple of hours working with Popples until Olivers pick up and Max gets dropped off.  Then, on a good day I get to make 2 lots of dinner, Max is extremely fussy, Oliver is mainly into Italian and Popples will eat almost anything so she’ll either eat what one of the boys is having or what me and daddy are having.  In between all this there’s washing up, washing, drying, folding, appointments, making/changing beds, decorating our ramshackle house, walking the dog, speech therapy programmes, education programmes to follow and general playing with the kids.  After dinner it’s supposed to be free play where I get ten minutes to look at the accounts or sort out the schedule for the next week but I inevitably get dragged into dolls house (everyone just poos and sleeps) or doctors (I’m the patient who is too hot and needs a blue plaster?!) or saving the olive tree which Oliver has never seemed to like and attacks at every opportunity.  If daddy is home on time he helps with the baths- his commute is awful so often I take this on and he joins us if he’s home on time.  Apparently the best game to play in the bath is shouting “Hoppity Voosh” as loud as you can whilst throwing water everywhere.  If all jug type implements are removed then hands work just as well splashing fiercely. Bed time reading then the “I need a wee” “can we do this tomorrow”  “I can’t find my cat/duck/witch” and Popples is asleep.  Oliver as has been stated is not sleeping so he stays up a bit longer while one of us does dinner and the other tidies up- do you know how far stickle bricks can get?

Max is in bed by 10, lights off at 11.  Oliver is having a hard time so it can be anything up til midnight before he sleeps, and cannot be left unattended at the moment due to his exuberant death defying activities.  So I don’t get much time with my husband at the moment, or time to do much at all.  Don’t get me wrong Leon takes on a lot after a full day at work helping out where he can but I don’t like him doing the nightshift then having to work all day and travel in commuter traffic on the motorway so I try to do as much as I can because my job is to look after them while he earns money to look after us so I can look after them.  At the moment it feels like we never see each other, we are both working flat out trying to do the best we can for our family and we are losing ourselves and each other.  It’s a few weeks away yet but I’ve arranged my mum and eldest to look after the other 3 while I take him away for our first wedding anniversary.  Just to have 2 nights together, a meal we can talk to each other through and just have some peace and together time.  I know it’s not a long term solution but it’s something.

I’m not moaning really, I know I am lucky to get to raise my kids and be there for them all the time.  I’m just saying it’s not easy.  I got to sleep in til half past nine this morning!  That’s how I know Leon still loves me “you look like crap, I’ll get up with them tomorrow” were his actual words but I know he loves me really. I think what prompted me to write this was a few things people have said to me.  They seem to think I sit at home watching day time tv and eating bon bons.  “some of us work and have children too” yes and I admire that but some of us also get time off or get to watch a film once the kids are asleep or get to share a meal with their family.  And no, my kids are not spoilt brats.  You can’t discipline the autism out of a person.  I discipline my kids of course I do, they have boundaries but there are somethings you just have to roll with because nothing you can do, at this moment in time, will change anything.  Things will change, but at this moment this is our family. And we’ll cope because we have to.  Everyone’s family works differently, some a little more differently than others.

Getting a bit rambly now due to lack of sleep, and I know theres a chocolate cake with my name on it downstairs- it’s a “hooray we survived the first week of the holidays” cake.

xx