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Proud of where we are

Paula — Wed, 23 Jun 2010 19:19:34 +0100

Having two children with quite complex special needs makes life more than a little interesting! One comment we get frequently when the topic comes up is "Oh that is a shame!" Whilst in all honesty I would not have chosen for Michael to have the issues that he has, this always brings a wry smile to my face as I and certainly he would not regard his life as one to be pitied. From our point of view, we made a conscious choice to have two children with additional needs as Elise is adopted and has been with us now for five eventful years. Not knowing anything any different, we parent in a slightly less conventional way but to us that is our normal - whatever that ise! Yes, things are difficult at times and when your child is standing there laying into you physically and emotionally , there are times when one does wonder what life would be like if it had taken a different path, but genuinely these moments are brief and I love my children to pieces even if at times I do not like them as much as I should!

Nearly everything that I do now revolves around special needs, whether it is being on committees, fund raising groups, special needs befriending or running Special Families. Every single one of my friends apart from one has a child with additional needs - not a process which has been by design (you don't have a child with additional needs - not my friend!) but purely due to the fact that we all share a common bond and empathy which others simply do not have, however well meaning. It sound crass but I really do love what I do, none of which would have happened if I had not found myself in the situation that we are now in. Every little achievement, every little smile, fills me with pride beyond explanation and I am safe in the knowledge that I can do no more for my children than I am. Their lives are full. Elise swims three times a week, plays golf, does horseriding, goes to gym club and loves art and is about to start playing the violin (still not sure about that one!) Michael loves everything. He swims twice a week, plays golf, rides, attends sports club and the gym, is learning the cornet, plays football, loves his bike and gardening. All done in a slightly modified way but all done with vigour and enthusiasm. We went to Stoke Mandeville mini games run by Disability Sports England a few weeks back and he was awarded the trophy for Best boy - not for winning everything but for his enthusiasm and good sportsmanship. I know that my children do not think that their lives are a shame or that they should be pitied. I certainly do not and wish that people would look beond the label and see how rich and fulfilling all of our lives are.

Bedrooms and Bulllying

Paula — Mon, 08 Feb 2010 10:30:20 +0000

Hope that 2010 has found you all well so far. Life in our household has been hectic as usual and the arrival of two new children’s beds caused excitement beyond measure!! I can’t believe how much chaos was created by these beds and how long did they take to put up!! Pleased to say that neither have fallen out so far and although proving a challenge, the ladders have been navigated successfully. It was a bit weird, as prior to the new arrivals, Michael decided that he wanted to have his bedroom painted – the first time since before he was born. It was goodbye to Mr. Elephant and hippo and au revoir to Sippery Sid and co who had adourned his walls for the past eight years. Many parents would have been sad at the obvious symbolic removal of their child’s early years but as John said, we never feel that way. Yes, it is a bit poignant that we move on, but we are just so grateful that either of our children are able to move onto the next stage at all. The fact that Michael wanted a ‘big boy room’ was fantastic and a real indicator that our little boy was growing up. Bless!
On a completely different note, Michael has had a bit of a rough time at school the last week or so, being physically and verbally attacked by another pupil. All sorted now – school have been really supportive and it was not the other students fault directly as the incidents arose as a result of his own particular additional needs. It did make me think though as to whether this amounted to bullying or not? We hear so much about our children getting a hard time in mainstream school and very little about any confrontations in Special School environments. The end result was that Michael was getting bullied but the intent was not there as Michael was just the victim of another child’s obsessive behaviour. Does that make it any less of an ‘offence’? When is bullying not bullying or is it always so? If a child is attacked because the perpetrator cannot cognitively reason what they are doing does that make the act any less important and excusable? The end result is the same and we were faced at home with a scared child who did not want to go to school but conversely, I am sure that the child involved had no clue as to the anxiety he was causing. An interesting one I think. Any thoughts gratefully received!
Anyway, we at Special Families wish everyone out there a safe and healthy 2010. We are in the process of redesigning this site and would be grateful for any feedback from you as to how we can make the site better and perhaps a bit more user friendly. Please go to the forum to leave your thoughts.

Christmas cheer our own way

Paula — Thu, 24 Dec 2009 16:08:48 +0000

I like Christmas, I do, at least I think I do! Presents are more or less bought and good old Mr. Tesco is coming like a blue and white striped Santa Clause on Sunday. As always though, there is the annual problem of making the day special whilst not bigging it up too much that the kids can’t cope with it. Take Sunday for example. The Christmas tree was bought, the lights put on and the decorations brought down from the loft. Within half an hour, the tree had fallen down thanks to Michael 'helping' to straighten an already straight tree! Within three quarters of an hour all the decorations were put upstairs and the activity aborted for the day as the sheer excitement of everything had become too much and was definitely not peace and goodwill to man! What to us is a fun time can very quickly degenerate into sensory overload and complete hell for our children. This year, thank goodness, we are on our own for Christmas day itself which I am soooo looking forward to. Even though relatives are fab, there is always that extra pressure, those extra cups of tea to make and just more stuff which always seems to add to the muddle. This year we may do a roast or we may just do sausages - we're going to wait and see how we feel. If we want to spend the day in our PJ’s we will and if Michael wants to walk around in the nude, then so what! We all want to have a good day and make it special, but for our two at least their definition of a good day is a bit different to others!
Have a lovely Christmas, whatever you do, and Special Families would like to wish you all a safe and stress free 2010.

Back from holiday

Paula — Wed, 04 Nov 2009 19:31:50 +0000

We have all just come back from an absolutely lovely break in Devon over the half term holidays. The weather was smiling on us and the children were great. Before we had the kids, we would never have considered going back to the same place, but this little corner of North Devon is our little sanctuary which we have gone to for the last four years. Its familiarity is reassuring for the children and makes the whole experience that more fun and relaxing for everyone. Interesting that Michael’s stress rope (whenever he gets nervous he starts roping off random areas ) stayed well and truly in his bag. Michael fell in love with Harry the pony and Elise has got a real liking for the chickens there (and guess what each have asked Father Christmas to bring them!) The whole farm is a great place to forget about the real world and wrap ourselves in a cocoon of soft fluffy normality of our own making.

One incident - isn’t there always at least one! - however brought an injection of reality into proceedings and made us both question how much we have actually dealt with coping with our children’s disabilities. Next to one of the beaches that we went on was a play area next to a café so we decided to stop off there on the way back to the car. Mistake. Michael is a stickler for the rules and stated shouting at the children who were walking up the slide rather than going up the ladder. He had no understanding of social cues and intruded on others playing, trying to impose his game on them. Of course, the children reacted and started answering back and even though Michael was blissfully unaware of what was going on, it was quite upsetting. We know that our two are not ‘normal’ but it is incidents like this that really hit home how different they are. All of the children that ours normally play with either have special needs themselves or have known Michael and Elise for years so are used to their little ways. This foray into the normal world, full of people who are unused to our two, Michael in particular, was a sharp wake up call to what may lay ahead of them in years to come. Also, it made John and I realise that perhaps we have not really got our heads around the whole integration thing as much as we thought. It suddenly dawned on us that we continually and subconsciously steer our family away from social situations especially those which involve other children. On one hand this works for us, and why not, but on the other, this is not real life. Should we try and integrate our children, a process which involves a certain amount of risk especially in terms of self esteem, or do we cocoon ourselves away avoiding any possible confrontation but not exposing our children to the knocks of life? I really don’t know.

Back to 'normal'

Paula — Wed, 23 Sep 2009 21:38:59 +0100

It is often said that finding out that your child has got additional needs is akin to going through the bereavement process - a state which can take some years to accept and for others can never be resolved. When I take time to look back, I sometimes wonder how we ever got through the day. No time for self-indulgence, as we were still faced with a beautiful little boy to care for and love, but the struggle to avoid bursting into tears continually and the sheer effort to face the day was overwhelming. Michael is now eight and as a family, we have definitely moved on, albeit down a very different path to the one that we expected. Normality has gone out of the window and is classed as 'boring' in our household! Traumas which others would be flapping about are path of the course which in themselves have lead us to have a massive appreciation of all the little things that are otherwise taken for granted.

Despite this, have I really accepted the fact that our son and now our daughter do not fit into the normal mould of society - a fact which is inevitably going to make their lives pretty difficult at times? The honest answer is no. not really and I don't know whether I really can. Feelings of anger, guilt and injustice are still overwhelming at times all compounded by the sheer frustration that there is nothing that I can do about it. One way that I have managed to cope with these feelings is to completely pack out my days, not giving me time for thought or anger. As well as bringing up two children with complex special needs, running a house and all the usual stuff, I have also in the past year done an OU course, been a befriender for Face 2 Face, volunteered two days a week at Michael's school, helped with the RDA and done a 17 week Webster Stratton course! Oh, and running this web site! Not until the school holidays started, and everything was put on pause, did I realise how busy I had been, how some things such as Special Families had suffered due to overstretching and how much I had been burying my head in the sand. Hate to say it but the holidays were a welcome rest and allowed me a great chance to reassess.

Anyway, the kids are back to school (how quiet is the house!) and things in my life have been significantly pruned! For the first time in a long time, I am having 'me' time and even though more time means more thinking, facing up to things is part of the process, I guess. Apologies for the lack of input into Special Families recently, and thanks to everyone who has continued to support this site - things are definitely going to pick up now! I once saw a cartoon in a newspaper that said "I am not sure whether I am running towards or away from something". Still not sure, but I am determined to keep running, whichever way life takes me.

For chromosomes and fish

Paula — Sun, 28 Jun 2009 21:02:30 +0100

Science marches on, and recent advances have made it possible to automatically analyse the human genetic "blueprint" in detail. Yesterday we received a letter from our geneticist letting us know that both Michael and Elise have chromosomal abnormalities. We don't know what yet as we are still waiting to talk to the geneticist this afternoon (why are these letters so vague?!). Of course, part of me felt massively relieved to think that at last we might begin to understand our children's conditions. Whilst we have always been aware that Michael has a syndrome of some sort, not knowing what this is makes the future that much more unpredictable. In his eight years we have seen the emergence of various elements at different times, including ASD and kidney problems. Are these related or is our son the 'victim' of multiple things? Is there anything else which is going to raise its head due to this invisible condition which he has? The genetecists have asked for John and I to give blood samples to try to understand what has caused the anomalies in Michael's chromosomes. I chuckled when I read the label stuck to our sample packs we received - "For chromosomes and fish"!
Elise is slightly more complicated as, being adopted, it makes it much harder to fit together the jigsaw pieces. Whilst John and I can toodle down to have our blood samples taken, this is not easily possible for Elise's birth parents as we do not have any real contact with them. The geneticist has asked for blood samples if possible nevertheless so we have to tread carefully, making sure we leave no paper trail back to us. I hope they choose to help for Amy's sake, but we will have to wait and see. I don't know how they have handled things and it may well be too much for them so we will not judge but I really hope that they do. For Elise particularly, if she chooses to have children it will be so important for her to know how her condition may affect them, if at all.
At the end of the day, the more information we have the more we can understand our children's conditions. Do I want to know? Yes, but sometimes insight is a scary thing. Will it change my children's conditions and the way that I feel about them? Absolutely not. Whatever the reason for my children's problems, I do and always will love them. A lady said to us yesterday that we were 'unlucky' to have two disabled children. What does she know!! Whatever my children’s eventual diagnosis and no matter how noisy, frustrating and wearing they can be, I count myself as far from unlucky, as what is greater than the unconditional love of two fantastic children? Beats me!

Getting out

Paula — Fri, 01 May 2009 10:12:30 +0100

One of the downsides of the lovely, sunny weather is that you tend to go out more. No longer can you slouch under the duvet, watching TV whilst the elements play havoc outside. Now, there is a whole world to be explored - the beach, garden, parks….Bloomin' nightmare!
Why? Where shall I start? Firstly, there is the actual process of getting out the door in the first place - a simple procedure you might think, but one which inevitably results in battle lines being drawn and chaos ensuing. Leaving aside the screaming abjabs we get from our anxious son because "I don't want to go out! Stay 'ome" there are the negotiations of United Nations proportions that ensue, that it really isn't a good idea to go out in your pyjamas to the beach! Then there is the 'chase me around the house' game - and I use that term loosely! - to actually get teeth cleaned and clothes and shoes on. Once that is achieved there is toileting, which then results in another change of clothes due to one or the other, or even both of them, aiming horizontally and getting soaked!
By this time we are both knackered and questioning whether it is worth going out at all, but persevere we do. Our son is pretty good at getting in the car, but Elise always seems to think that this is the opportunity to practice her 'I am going to pretend to be a ladder and go rigid' workout. Eventually, strapped in and with a minimum of one screaming child, we set off on our merry way, to get down the road and realise that we have either left Michaels comforter or Elise's earmuffs at home, so back we go at which point one of them then decides that they need the toilet again! (Go back to previous para to repeat following procedure!)
Once out, despite running off and having little danger awareness, Michael generally has a great time, apart from the fact that we usually have screaming abjabs when we need to go home as "No want go home - stay 'ere!" Elise, on the other hand is a different kettle of fish! Due to adoption issues, she gets worried when we are out, subconsciously concerned as to whether or not we really are going home again. This results in frequent screaming episodes, refusing to walk and a seemingly determined effort to get onto Supermarket Sweep, emptying shelves as she goes! Combine this with her fly phobia and extreme sensitivity to noise, a great time is usually had by all! I honestly think that we could win "Britain's got Talent", the stares and apparent audience that seems to follow us wherever we go! Ah well, at least there is Winter to look forward to!!

Eight and counting

Paula — Wed, 01 Apr 2009 21:01:26 +0100

At the mo, we are in the throws of the dreaded Chicken Pox - uninvited at the best of times, but especially when it is your 8th Birthday! In the midst of Calpol and Calamine lotion, we did manage to have a Birthday of sorts for Michael, although the planned bowling party, complete with 15 guests, has had to be postponed. Aagh! A disappointment, but as with all milestones, it did give me an opportunity to reflect and appreciate how far we have all come in the last eight years. Little did I know on 28th March 2001, how much our lives were to change and how much my expectations and hopes of being a ‘normal’ parent were to be radically shaken up. The last eight years have been a roller coaster to say the least, with tears of joy at the tiny but major steps forward, mixed with copious amounts of tears about what is not to be. Will my child ever be able to live independently? Will my child ever get married? Will they ever have their own children to love and fret about? Who knows? People will care for my child, but who will care about him when we are no longer around? All of life’s milestones which millions take for granted are great big, looming uncertainties for us all.

Having said all of that however, I have in front of me, a slightly spotty young man who is a joy. He is funny and loving and the centre of all that I do and am. We were told that he might never talk, but now he does not shut up (don’t know where he gets that from!) albeit it in his own unique way. We were also told that he may never walk, and even though he is slightly wobbly, and tires easily, he can more or less keep up with the best of them. He is a county champion at special school swimming (width with a woggle!!), a demon on his tricycle and loves sport of any kind, again played in his own unique style! Music is his passion and his new drum kit (it is electric and has a volume control!) sits alongside his guitar and the family piano. He knows more about computers than I will ever know and his knot tying with his special stress rope is fantastic!

Problems have reared their head along the way, sometimes seemingly insurmountable, but at the centre of all of this is a slightly quirky, definitely noisy little boy whom we all love very much. We have good days and bad ones and I am not pretending for a minute that I don’t sometimes yearn for that sense of normality and boringness. This though is our normal, our everything, our family, and that is what is the most important thing in the world whichever shape or form it may take.

A series of stuff

Paula — Wed, 25 Feb 2009 21:42:27 +0000

The end of 2008 and the beginning of 2009 haven't really been that great in our little world. Not in a dreadful, dreadful way and I do count my blessings, believe me, but we seem to have had a run of 'stuff'. Elise was diagnosed with severe ADHD and then we were faced with the difficult decision of giving her medication or not. After much soul searching and research, we decided to go down this route but not without severe forebodings about what might happen. I don't know why, but I felt so guilty when telling friends about our decision, almost as if I was letting Elise down some way by not managing to cope with her without medication. The factor which really swung it for us though was the fact that she is starting to get bullied a little at school. Being so often 'in pickle' her classmates have started blaming her for things, even when she isn't around! Bearing in mind that the perpetrators are just four, coming on five, this made us quite worried as to what the future holds in store for her. Well, we decided to try Ritalin and thank goodness it has paid off! Life is much calmer and Elise is much happier, although going to sleep really late!

Having just got our head around this, and then after a meeting with a new paediatrician, it has been decided to test her for Aspergers as she is showing a lot of the characteristics. I'm not 100% convinced of this as it can be related to attachment disorder, but we will have to wait and see what happens.

On the same day as getting this news we had a really interesting meeting with a sensory integration therapist about Elise (how I get anything else done I'll never know!) It turns out that Elise has got significant issues with fear of abandonment, so new exercises have been introduced into our already hectic schedule. Rather than walking out of the door, we now have to do ten minutes of deep pressure massage to calm down her anxieties about going out, by which time I am sure that she or Michael will need the toilet again!

Michael is in relatively good health, apart from a digestive problem which resulted in us going gluton free for a while. For most people this would have been a trauma but in the scheme of things, this was just another thing on the list! Michael has also had a cognitive assessment which showed that he is roughly four and a bit years behind his chronological age - at an age of seven, this is quite a bit less than we had hoped. Strange, isn't it, that even though you know something, when someone actually says and you see it written down in black and white, it always seems so much worse and harder to handle.

Anyway, in the middle of all this, John and I have been trying to get on with things but it has been quite tough. Putting on a calm veneer when you are being told that your son will always have to live with support or acknowledging the fact that your daughter has deep psychological issues which cannot be solved overnight, is relatively easy until you come home, shut that front door and face the stark reality by yourself. Questions, uncertainties and panic rushes through your head and the crux of the matter is that there is not much that you can do about it all, apart from being the best Mum or Dad that you can. The scarey thing is when you have a bad day and that bad day turns into three and then a week. Having been depressed before, it is a worrying feeling not knowing if this is a temporary blip or a spiral down - one of my friends calls it the bath plug effect, pulling you down without you being able to stop it. Innocuous things that would otherwise wash over, become big issues and throwaway comments really, really hurt. Kindnesses lead to floods of tears and those who are truly your friends shine through.

And what to do about it? Apart from waving that magic wand and making things all better, there isn't much really when it comes down to it. The weird thing about all of it though, is that my special little girl and my wonderful son (and John!) are what keep me going and give me purpose. These two individuals who cause me such heart-ache and worry, are the two who only have to smile or lay their hand on me, and in a second they have completely brightened up my day. Honestly! Kids! Who would be without them!?

Christmas Recovery

Paula — Wed, 14 Jan 2009 08:40:36 +0000

Well, the Christmas decorations have been put away for another year and with the children returning to school, we have returned so a vague sense of normality - whatever that is!! I don’t think that we really realise what hard work Christmas is, not only for us rushing to get things ready in time, but also for our children.

Elise’s school spent the last two weeks of school practicing for their school extravaganza, practically full time it seemed. As predicted, she was unable to participate due to the whole thing being too overwhelming for her (and having to sit still for longer than 5 minutes!) but the well supported attempts of staff to include her as much as possible had the knock on effect of increasing her stress levels to a point where she was practically unmanageable the weekend before.
Michael, being the cool dude that he is, handled things surprisingly well at school, but come Christmas Day, despite our efforts to down play things, was unable to handle the hussle and bussle and lost it big time. Whilst a time for fun and celebration, I do sometimes fear that for many of our children it is as much a time of stress and discomfort. How can you make it special without making it too special? At least I have got another year to think about it!!

Anyway, John and I would like to wish all the Special Families out there a safe, healthy and trauma free 2009. Love to you all x