Special Needs parents can get grouchy too you know!
I decided to write this post on the different things that have been said to my family and how I have felt across the years that I have been looking after Pretzel. Some are said with malicious intent and some are things that have been said by family or friends who think they are being helpful but maybe don’t realise how hurtful their comments or actions can seem. I am sure you have probably heard or done some of these before (I admit that I have before I had my special needs daughter) but there may be one or two things in there that you may not have thought about and they may surprise you.
I am often jealous. You may not think this would be the case but it is definitely true. When I see a 2 or 3 year old who can do what my daughter can’t do at 9 years old (such as talking), I feel jealous and it can upset me quite a bit. My daughter can’t point to tell me what she wants or tell me where it hurts when she is ill and it hurts me. Hearing about all of the things that your child can do is a reminder to me that my daughter isn’t able to do those things and it is like a twisting knife in my heart. I have sometimes sat at night crying thinking about the things that my daughter will not get to do or enjoy. Sometimes it is hard to see other special needs children who have a diagnosis because they are more understood by the general public and they often have support networks that they can access whereas I can’t because my daughter has an undiagnosed genetic condition.
I feel isolated. Parenting a special needs child is probably the most isolated I have ever felt in my whole life. Parents with ‘normal’ kids can make me feel very uncomfortable and even comment sometimes that they don’t want themselves or their kids to ‘catch’ what my daughter has. Other parents either shoot you that ‘I am so sorry for you look’ or spend so much time talking about their own child and their achievements that it makes me jealous or fed up. Since finding SWAN UK it has been a little easier as I can talk to parents of other special needs children who are going through similar situations but, each child is affected in very different ways. Only I understand my daughter and her special needs fully and what caring for her entails. Because of this role that has been given to me, without my choosing, I can feel very isolated and especially if no one has visited in a while.
I am so very, very tired. Most parents will feel this at some point, but parenting a special needs child takes things to another level of tiredness. Even if I manage to get a good night’s sleep, or even if I manage to get some respite, there is still emotional and physical tiredness that comes from tending to the special needs of my child. Appointments with the hospital and doctors’ surgery are not just a few times a year, they may be a few times a month or even a few times a week. I have to do different therapies with my daughter which have to be done every day. Housework, shopping, review appointments for different services, fighting for equipment and services to make things easier for my child are things that eat into the time that I have available. This is not to mention how emotionally draining it can be raising a special needs child can be, it is like a rollercoaster, one minute you are on a high, the next you are plummeting down until you hit rock bottom. This is why any small amount of help we get or any time to myself is very precious and is very much appreciated.
I wish you would not say things like: “retarded”, “slow”, “touched in the head” There is a strange thing with these phrases as I have heard them used both maliciously and to try and describe my daughter. They are awful phrases for me to hear in any regard but to have them associated with my daughter hurts even more. Please think before you use any kind of descriptive words about children with special needs as they are often hurtful both to the parent and the child themselves. I believe people should be educated about this and I wrote about it in an earlier post called Is Education vital for key disability issues?
I am only human. I have been to Hell and back in raising my daughter. I have become a better person because of my daughter and I have developed a sense of empathy and patience that I would not have otherwise, however, I am exactly the same as other parents. Sometimes I get snappy and irritable, my daughter drives me up the wall, and sometimes I just want to lock myself away and get 5 minutes to myself. I still have dreams and wants that need to be satisfied. I blog, listen to music, play on my Playstation 3, enjoy woodcarving, love to read books and watch mind-numbing TV like Family Guy or American Dad sometimes. I have to escape my role as a parent and carer every now and then and it is nice to be able to have a conversation that doesn’t centre around my special needs or my daughter. Sometimes talking about my kids is the only human contact I will have in a week or even a month of visiting doctors or the hospital, so it is nice when I do see you to talk about other things than my daughter and her condition.
I am frightened. Do I do enough for my daughter? Have I forgotten an appointment or missed something that could improve our situation? I worry about the future for my daughter, Will she ever get married? Will she ever live independently? Will she ever learn to speak? I am scared that she will hurt herself as she is not aware of what danger is. I am scared that she lashes out violently and hurts someone or she is hurt by somebody who doesn’t understand her special needs. I am scared about money and whether I will be able to keep up with the demands that her special needs carry with them. I am scared that the services and equipment that she needs may not be provided in the future.I am terrified of what will happen to my daughter if something happened to me or her mother. I am frightened to think that she will be relying on her sister when she gets older after we are no longer able to care for her. I am scared that one day I may be carrying a coffin with my daughter in it and that is something that has almost happened on a number of occasions. It is the living day to day with the uncertainty of what tomorrow entails for my daughter even in the most basic sense that is the most scary thing to deal with.
I want to share information about my daughter/It’s hard to share information about my daughter. There are two sides to the coin and these are the choices. Sometimes I am overjoyed that my daughter has done something new or we have tried something with her and she has liked it. There are other days where I may be trying to process something the doctors have said or something I have found out that I may not be ready to discuss just yet. Sometimes I have hidden what the doctors have said because I don’t want to admit it to myself or upset or unnecessarily worry my family. There are still things that I haven’t been able to tell my family about my daughter and I probably never will. There are the days when I do want to share my feelings but you are better to ask a question that relates specifically to one subject such as “How did Pretzel enjoy the first play date with the one-to-one support worker?” I am more likely to be able to start to share if you ask a question like this rather than “How is Pretzel doing?”. This type of question usually gets the response “O.K” as I often can’t be bothered to go through the mountain of things that you may not see ‘behind the scenes’ after you have finished your visit.
I get frustrated and angry. I get very frustrated and angry when you don’t listen to what I tell you about my daughter. For example when you talk to my daughter and I tell you that she doesn’t understand what you are saying and she can’t talk back to you, please don’t look at me like I am an idiot. She may be 9 years old but she has the developmental level of an 18 month old child so don’t expect her to do something you wouldn’t expect of a child who was 18 months old. I also get angry and frustrated when you treat her like she is a ticking time bomb. She is just like other children and loves to have a cuddle and a tickle so please don’t treat her like she is about to explode in a cluster of seizures or act in some unpredictable way that will be anything different to any other child at her developmental age. She may have special needs but she has emotions and feelings just like other children so please try and be sensitive to those as well.
I get extremely touchy and fed up. I don’t know how many times I have heard that I should be doing this or trying that with my daughter. If you want to suggest a treatment, teaching method or some other thing that I should be doing with my daughter, PLEASE DON’T. I appreciate the thought but my daughter is not like any other special needs child that you have encountered and in all likelihood if you have heard of it or tried it SO HAVE WE! I know that sounds touchy but you can sue me. Every day someone tells me what I should or shouldn’t be doing with my daughter for one thing or another and it has driven me to get very shirty with people because the best doctors in the world have been stumped by my daughter so what makes you an expert on the subject? Not all difficulties faced by special needs children are the same. For example a child on the autistic spectrum can be very different to another child on the same spectrum and a child with profound learning difficulties can experience them in very different areas to another child, so please don’t think that whatever worked for you will automatically work for me and my daughter. Only myself and my family see the work that we put in to get even the most basic pattern recognition with my daughter and it has taken almost 5 years of constant repetition for her to recognise a single word. Please don’t try to undermine that work by dismissing it as ‘not being enough’.
I hope I haven’t alienated any of you with this post but it was something that had been sitting on my mind for a few days now and I could only think about writing it the way that I have gone about writing all of my other posts, honestly and straight from the heart. I apologise if you are offended by this in any way but it is a truthful insight into what happens at various times throughout the journey we are taking in caring for Pretzel. In saying that there are a number of times and a number of people who have enriched our lives. They are the people who make this difficult journey more tolerable and there are some times when I truly feel blessed to have the opportunity to travel this road that I am on with my daughter. I have grown as a person and I appreciate every tiny little detail of life as each and every one is something we were told was not going to happen. When you face those odds I will take whatever I can get, wherever I can get it!
Until next time folks, Stay safe and keep smiling!
Sleepless In Newcastle 
