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.
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7 thoughts on “The truth about watching my special-needs son being raised by strangers

  1. Jo

    It must be such a struggle with your guilt, but Oscar is happy and well cared for, he is progressing in surroundings that are right for him. You have to do right by everyone in your family and you have done so! Move forward and enjoy all your positive times with Oscar and with your girls. Be brave. Xx

  2. Your account of your life with Oscar is so deeply moving and honest. i have followed your journey in the Autistic Diaries and Your love, commitment and total dedication to Oscar are palpable. I too am the parent of a son with profound autism and learning disability and know the challenges, guilt, the dark places that parenting autistic children induce.
    When my son started having overnight respite, I cried, I felt as though I’d failed. The guilt was almost overwhelming but I know he’s in good hands where he is shown huge respect and dignity. Like you I’m not keen on what he eats there but my son is now a teenager and if a few custard creams and chicken nugget sandwiches are as bad as it gets then, c’est last vie! I now relish these little oasies in time when he’s away.
    You mention your guilt at spending more time with your other children but I believe Oscar’s siblings will be Oscar’s best assets as he gets older. My older children have promised me that they will always include their brother in their futures. Your girls will share and include Oscar too in their respective lives. It sounds like you’re doing a great job in raising your daughters to be compassionate and loving, that love in turn will reach Oscar. Children, in my experience, who have a sibling with special needs tend to have an extra emotional dimension. My other kids have grown into the most tolerant, kind, non judgemental young adults I have ever met. So whilst I would , if I could, magic Autism out of my world I do believe as a person I am a better version of myself . I similarly believe my son’s siblings are too better versions of themselves.
    Be kind to yourself, it’s not easy but it sounds as though Oscar is doing fantastically well. My son has made huge progress, his violent outbursts have become a thing of the past, he’ll never live an independent life but he is maturing at his own pace.
    Sorry to have rambled for so long.
    Sending love and admiration.
    Be strong!
    Xx

    • Hi I have only just seen this! Sorry my computer is broken so I just have my phone these days. Thank you for your lovely words. It is comforting to know there are others out there living a similar life. Much love x

  3. ingrid

    I placed my child in a group home last year. 3 hour to get to Wisconsin, since I am in Chicago, Illinois. Well, I visit him every Saturday, for four hours of outing, and riding in the car, he loves it. He is so far from me, and my heart aches. Yes, I feel guilty, too, and always will. But when we go back to reasoning and logic, the good Lord knows this is the right arrangement for now. Will he come home for the weekend? My son is a big boy 14, and severe autism and behaviors. Once the growing hormones and behaviors subside. Of course. But yes, painful painful and empty feeling. But let us be easy on ourselves for our other love ones need us. We deserve to have some peace, too. Luv n Peace,

    Mama like you…..

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