The truth about watching my special-needs son being raised by strangers

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Oscar was diagnosed with epilepsy at 2 years old. By three it was also confirmed that he has autism and ADHD. His father and I split when he was about 18 months. Though apart, we maintained a good friendship and parented Oscar together but separately. Within the next year, I met Muzz (my now husband). Through many ups and downs, the three of us did our best by Oscar and communicated well with each other during the process. 

Oscar was approaching 6 when I had my eldest daughter Susannah. Though he struggled to begin with, I received quite a lot of care (in our home) for him and plenty of family support from my aunts and Oscar’s father so we made it work. We had rough days of course but mostly, we coped. The next year, I fell pregnant again. This time with twins. From the very beginning the pregnancy was hard. I was very sick, anaemic and constantly drained. Oscar’s anxieties increased as I was not able to deal with him in my usual way. His violence was severe. Oscar would fall asleep (exhausted) between 6-7pm every night. By midnight (often before) he would be wide awake. That would be all he slept for the night. I would try to leave him to play but he would trash his room and his things and throw his belongings down the stairs. I also received a number of complaints from my neighbours because of the noise he was making during unsightly hours. To say it was a difficult time is an understatement.
Oscar had been building up to stay over night in the local residential care home (which is actually part of his school). It was to be arranged he would stay there a couple of times a week to give me a rest. In July 2013, my social worker moved him in on a 52 week basis after hearing news of him kicking me repeatedly in the stomach (while I was pregnant). I didn’t fight to keep him home because at that point, I was desperate. No one in our house was coping and nobody was happy.
Since his move, Oscar has blossomed in ways I at one point never could have imagined. His anxiety levels are so reduced now that he is progressing in school. He is able to match all the letters in his name and he is even starting to try and copy the sounds as he does it. Oscar is pretty much toilet trained. Though he has to do it on a timer, he is mostly dry and so pleased with himself for it! My time with Oscar is only positive now. We cuddle, laugh, play. When he comes home he tolerates his sisters and the noise because he knows he can ask to go elsewhere when he has had enough. I am slowly building the time up but I will never force him to spend longer here than he can manage. I am hoping one day he will be ready to stay overnight again. Most importantly, Oscar is now happy. He is content with his every day life, beaming when he comes home and from what I hear, has a great relationship with his dad still. Rationally, I know that this should be enough for me to accept what has happened.
Sadly, and perhaps selfishly, for me this isn’t the case.
At the end of last year I hit a pretty dark depression. I am on my way out of it now I think. There  many factors of course but my feelings about Oscar are the ones I am struggling to come to terms with the most. I am trying very hard to recover. Sometimes my blogs really help with questionable emotions. So I thought I would share my daily struggles.
Here is a list of the things I find troublesome about our situation with Oscar:
1) The automatic shame I feel when people ask about him. I hate talking about him because it just makes me feel sad. And like I have failed as a parent.
2) I feel guilty about how little of me he gets compared to his sisters.
3) I have no control over his diet. I am fairly into nutrition. All of my children eat healthily. I have always lived by the philosophy of ‘if it isn’t in the house, they won’t ask for it’. And they don’t! Oscar was happy to eat what ever snacks and meals I gave to him. Now I have to sit back and swallow my words as I observe him eagerly consuming huge amounts of cereal bars, biscuits, crisps, white toast etc. The actual meals the children are given are fairly balanced as they are delivered by a kind of ‘meals on wheels’ type company but it’s the snacks and amount of sugar he is allowed to eat that upsets me. I just wouldn’t ever have him eating things like that except for the occasional treat. Now he will insist on those foods because he sees the other children in the house with them. Of course they can’t deny him what they have and I don’t want him being treated differently. Some won’t eat anything else so it is of course great when they eat anything at all this is I suppose why they stock such items. Oscar has always loved food and now he chooses sugar constantly throughout the day because it’s an option. Who wouldn’t? I simply have to smile and bare it.
4) The same goes for his wardrobe. I shouldn’t get upset by this but I do. I said to Oscar’s key-worker from the day Oscar moved in that if he needs anything then I want to get it. I am still his mother and want to provide his clothing. The problem is, they now receive the allowance I used to get for him so they have to spend it on him. Sonia is a wonderful person and I couldn’t have asked for a better carer to work with my boy. She really does go above and beyond for Oscar. She does try so hard to buy things she thinks I would chose, and some of them I might. But it’s not the point. I want to feel like I am my son’s mother. At best I feel like a really close aunt. The last batch of clothing I bought for Oscar was handed back to me the next day by one of the members of staff after they rather non-emotionally explained “None of these fit, you may as well take them back.” Of course the person didn’t realise, but that hurt. I don’t even know the right size clothing for my child these days? Ouch.
5) I adore my visits with Oscar. I like to spend time with him at the home and build a relationship (and trust) up with all the staff members as well as take him out and bring him home. There are certain tasks however, I struggle to hang around for. The kind of things that used to be part of my every day life and now I have to watch strangers perform. Like administering his medication. Giving him a bath. Changing him into his bedtime clothes. Putting him to bed. The real I suppose, mundane, parental and necessary duties. I feel actual pain when I watch other people doing these things. True heart ache.
6) I find it very difficult to make myself heard if I do have any complaints as the house is quite understaffed. I actually very rarely have any upsets but over the 2 years, the odd thing has arisen and when I have voiced these issues, they have pretty much been laughed off, like I don’t know what I’m talking about. I like everyone there so much that I don’t want to cause any friction so I generally just leave it. It’s very awkward sometimes.

7) Oscar’s father can not forgive me for allowing Oscar to live there. I understand. He is not a well man so cannot have him full time. And in his eyes, I have a cosy new family and Oscar is conveniently out of our hair. Part of me justifies my new life and embraces it. A larger part of me agrees with him, we all have choices in life and I chose to have more children and risk my abilities to look after my son who needs at least one-on-one with him at all times. I have four children (the girls are 3 and twin 18 months). The maths does not add up. I find impossible to forgive myself for the way things have turned out so how can I expect Oscar’s dad to? This does of course contribute to my unhappiness because in my eyes we are all still family and I care about him deeply.

8) If I envision a future without the belief that Oscar may not one day come home to me it makes me think terrible (some would say irrational) thoughts that I can’t control. Quite frankly, I don’t want to go on if that is to be my future. All I need to be happy is all my children, under one roof. I picture us somewhere self sufficient where we live of the land and our animals. Somewhere quiet and safe. It may be a romantic thought but it’s a dream that I use to get me through the days. Not entirely unachievable. One can live and hope.
I’m sorry if this is coming off bleak, but it’s reality. We are living a very complicated situation. I don’t know of anyone who can relate to my yearning. I don’t know if I will ever be OK. Maybe I won’t?
I just need to hang on to the truth, Oscar is happy. It may not be because of me or anything I have done for him as a mother but he is. The way he has advanced over the past couple of years, proves that he may one day achieve anything he desires. And he might come back to where I feel he belongs. Until then, I have to clutch on to any beautiful moments we share together and use that warmth to smile when I talk about him instead of cry. Until then I have to be grateful for how much fantastic support we receive as a family when so many people out there are struggling. Until then I have to remind myself that it’s better that I continue with a lugubrious hole in my heart than Oscar not gladly thrive and grow. It is a sacrifice. One that benefits him for now. That is of course what matters the most.

Coming to terms with anxiety

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I like to be busy. Well I say that, I’ve only ever known… manic I suppose. I had about of year of utter laziness in my teens and that was great! But apart from that, yep pretty bloody mental.   You may have read my other blog- the autistic diaries which was about my son Oscar. Oscar is now nine and living in the residential part of his school full time. We have had quite the journey. He is flourishing and I couldn’t be prouder. Even if I do live with a permanent rain cloud of guilt, showering over my thoughts; knowing that he is not with me, the way a child should be. Sometimes one has to put pride aside I guess, and do what they believe is best for everyone in their family. That is what I’ve done, I hope.   I have three other children.   Susannah is three on valentines day. Being born into a household that (at that time) was hugely dominated by her brother’s needs, has given her a naturally helpful manner and heart full of compassion. Her understanding of other’s emotions and needs surprise me every day. Don’t be fooled though, the girl has confidence. She is wholly observant, yet also manages somehow, to keep all eyes fixed on her. A winning combination.   Then there are my twin daughters- Rosie and Berry. They are just over a year old. They are identical and fascinate me constantly. Within their first weeks on this Earth, their differences in character were evident. Yet somehow, they are completely and perfectly the same. They are perceptive, dainty and careful. With a cheeky glint of something extra.   I truly am the happiest I have ever been. There is so much love in my life it overwhelms me.   I live in a strange panic about my daily contentment. My children are all so fantastic. I have the most supportive, kind and idiotic (in a good way) partner who I share this glorious life with. My friends and family are so very beautiful, talented, interesting and giving. We have a modest and messy home that is warm and is ours. Yet I can’t shake the reality that it is all temporary. I feel like all the birds of paradise have chosen to live on my roof and sing me the worlds best music everyday, with plans to one day move on forever without looking back- leaving me utterly alone in my silence.   Most new parents will relate to these feelings. When you watch your tiny, innocent and thoroughly vulnerable newborn sleeping, it hits you- nothing else matters now, without this person, life is no longer worth living. And then you check every 30 seconds to make sure they are still breathing. No parent can prepare for this kind of love. It consumes you and alters you in ways that are absolutely out of your control. I think it is the most wonderful thing that can happen to a person. But the underlying angst that comes with it is hard to bear and in my case, impossible to cast aside.   I’ve have been ‘anxious’ since my teens. When I was eighteen it was really bad. I was obsessed with the world ending. I used to imagine Milton Keynes glass shards soaring for miles and chopping everyone in half. My breathing and heart would accelerate so much that I then thought I was going to have a heart attack. Then there was the addition of how odd I was being. I would have to count my footsteps all the way home to deter my thoughts from obsessing on death but when I arrived home to safety, I would then be tormented with the concerns that what I kept doing was abnormal and that maybe I was going mad. This was (and still is) an easy conclusion to jump to as my family has a history of mental health problems of many kinds. That for me is the most terrifying thing that could ever happen. Losing my mind. Losing everything because I’ve lost my mind. Then I discovered alcohol. This took the edge off. I could quite easily have let that deplete me.   I didn’t know about panic attacks at this point. It was thanks to a good friend that I learnt about these. Tessa was staying at my house when she was  awoken by me making a phone call. I was in a hysterical mess on the bathroom floor telling NHS direct that I thought I was dying. I am still always in awe of Tessa’s knowledge and experience. At this young age, she knew exactly what was going on and what to do. After calmly taking the phone from my hand and hanging up, she held my hands, looked into my eyes and told me I was having a panic attack and that everything was going to be OK. Everything was OK after that.   I mostly learnt to anticipate and curb the attacks from thereon.   As an adult I have mastered how to avoid the majority of the scenarios that trigger my anxiety (without out the use of alcohol). Though one cannot control everything. Every few years, something will happen that will set it off to a point where I don’t want to interact with the outside world. During these times, my skin will hurt, my heart will feel offbeat and jumpy, sometimes I shake, I will cry in strange unpredictable outbursts, something large will manifest in my throat and won’t go away and indigestion takes over my insides so I find it hard to eat. I even break out in spots. Then there are the thoughts, the maddening voices that haunt every minute of those times: “You are going to lose everything.” “You are crazy already and soon everyone will leave you.”   I have however trained myself to make music and/or exercise when I’m cemented in this dark place. After a few weeks, it usually subsides. I have not yet needed medication as my life balance has not been too affected at this point. If I thought it was necessary though, I would not say no to giving it a go . Especially if I knew I was making my loved ones miserable.   Strangely, I believe existing with anxiety has many positive attributes to offer to life as well. It fills me with a constant need to  ‘live for today’. People think I’m nuts because I express so much love all the time, because I need them to know, right now how I feel about them. It’s an urge so strong and passionate, I can’t shake it. This love is overpowering and exquisite and I feel so lucky to have it there reminding me how beautiful people are all the time. And without the intention of sounding cheesy, it’s the hideousness in the world that highlights this beauty. Which somehow makes even the most unseemly situations appear alluring. Like the people that make sandwiches for their neighbours after an earthquake. That’s human nature, or part of it. That sort of kindness is hidden in our usual everyday hustle and bustle. It’s the horror of the earthquake that brought these simple but tender actions to the surface. Living with anxiety, makes me feel like an earthquake is always about to occur, so I guess that makes me aspire to be the type of person that would indeed display that sort of kindness regardless of whether the earthquake actually takes place. As well as take pride in the graciousness of anyone I spot doing something extraordinary. These things make me uncontrollably happy! This must be a good thing?   I also think dread should make us give people the benefit of the doubt each and every single time someone screws up. (I am not talking about evil here- that is another topic altogether. I am speaking about unfavourable actions that people take, or even characteristics that they maintain and why it should not define their entirety.) When you know the world is ultimately going to end, it is of course terrifying but at the same time it could help us refrain from seeing only ‘wrong’ or ‘bad’ in most daily situations. Fear is a powerful motivator. It can help us put things into perspective. If we viewed everything as a stretch of  very limited time we might be able to evaluate multiple options of outcomes for certain scenarios. When some of the options are positive, we could place all our energy into realising as long as there is hope, it’s not the end for anyone. If we as a majority held on to that, fewer people would give up on themselves I think. We all need people to believe in us. So if someone lies, steals, hurts or falls so low it’s hard to imagine them in a good place, perhaps believing in forgiveness, fresh starts and practising compassion will give the people around us a chance to redeem themselves. The opportunity to reflect, learn and grow, and most importantly, to want to do those things. I certainly would like those chances from people when I fuck up. I don’t want there to be a limit to them. I truly believe we can love anything better. I also believe, within certain circumstances, we are all capable of most wrongdoings. Therefore, no-one is better than anyone else. I conclude from my experiences so far that most people are good and everyone is shit sometimes, sometimes more often than not. But that is not all they are. I think we could all use a constant reminder that loss of any kind trumps (pretty much) anything else when it comes to hardship. Then we might all learn to value the love we share. We could all live a ‘Richard Curtis’ kind of life. That would be the best.   So (in perhaps a rather accidentally self-righteous kind of way- Let me assure you, these are just random thoughts that occurred to me recently and I do not think myself any kind of guru, far from it), I’m just trying to say, with every bad there has to be a good. Every time I think about loss, I am reminded of how much I love. Anxiety fills me with the constant fear of loss, therefore I feel this hugely emphasised and unbelievable pang of love all the time. And love is better than anything. It’s what connects us with others and makes life beautiful. So I am actually grateful for this strange condition.