Ever wondered what it is really like to parent from a special perspective? Parent to a Special Needs Child? Where do you turn for help? What challenges do you face? What has surprised you? What have you learned? Every month I will be featuring one of my brilliant fellow SEND bloggers and sharing their reflections on raising a child with special needs.
Welcome Lynne to Diary of an Imperfect Mum. Lynne blogs over at A blog about Raising my Autistic Son. Lynne is married to Nick and they have four children. Their eldest teenage son is on the autistic spectrum. Family life is hectic and funny - friends often comment that they feel they have been in a sitcom following a visit! Lynne is also a Speech and Language Therapist.
Edward was diagnosed with a type of autism called Asperger’s Syndrome when he was 8 years old. However I had had moments where I suspected he might be on the autistic spectrum on and off from when he was only two years old. Those moments included things like him being in his own little world staring into space, flapping his hands in front of his eyes and an obsession with lining his toys up. However he also did things which made me think I was just being neurotic, and that I was looking for a condition that wasn’t there. He liked cuddles and kisses (from me and Nick at least), he liked playing imaginary games and he was funny, very funny. These behaviours didn’t match the stereotype I had built for autism and so it took me quite a while to ask for an assessment.
2. How did you feel when you found out that your child has Autism?
I felt lots of different emotions at the same time. I felt relieved that I hadn’t just been imagining things. I felt vindicated for having raised my concerns. I felt worried as I realised that actually I didn’t know as much as I wanted to know about autism. What would the future hold? Would my son be able to make friends, find a partner, and hold down a job? I also felt very strongly, right from the start, that autism wasn’t going to be a dark cloud over us, it was simply an explanation for his set of strengths and weaknesses, and he was still my son whom I dearly loved. I also felt that we had an explanation for some of Edward’s behaviours which would help everyone, including Edward, grow in understanding about whom he was and how to make things better than they would otherwise have been.
3. Where did you first turn for help?
My friends and family were all really supportive and helpful. They have all tried to get to know and understand more about autism and have been unswervingly accepting towards Edward. In terms of help I went along to a couple of parent group meetings to meet other parents of autistic children. These meetings were good but I struggled to get to them as I am a working mother and my four kids were still young at that time. However just meeting other parents who were further down the road than me gave me hope.
I also managed to get some extra help for Edward by finding out what services the school could access. I put his school in touch with an organisation of specialist teachers who provided 6 sessions for Edward and his primary school teachers. Changes were made following this input that made a real difference to how Edward managed at school.
I turned to my professional background and used psychosocial techniques to help Edward think about his own communication to try and help him to develop more social awareness and social communication skills. I could have gone on a parenting course but I couldn’t manage it logistically. Other parents who went on it did find it very useful.
4. What advice would you give a parent who suspects or has just found out that their child has Autism?
Find out as much as you can through organisations like National Autistic Society.
If you suspect that your child has autism look at some of the autism checklists and if you can tick off most of the boxes have a chat with health or education staff and ask them what they think. We had to approach our GP for an assessment and he really wasn’t keen on referring Edward to the paediatrician as he thought he didn’t need a label – I had to be very assertive and insist that I wanted an assessment. The assessment process can take a really long time in the UK, so if you suspect your child may be on the autistic spectrum I would recommend getting the assessment ball rolling as soon as possible. I’ve written about our experiences of this in “wired differently” and “an unexpected battle”.
If you have just received a diagnosis for your child there will probably be local support groups so be brave and go along, especially so if your immediate circle of friends and family are not understanding or supportive.
Remember that you are the expert when it comes to knowing your own child. Work collaboratively with local professionals to try and find ways to communicate with your child.
You may need to connect with your child by meeting them through their interests even if you are not interested in what they are interested in! I know far more about dinosaurs and maths than I ever planned to.
Be prepared to make changes to accommodate their sensory needs. If they throw a wobbly about wearing a particular piece of clothing they may have sensory issues which make that item really uncomfortable for them – they may not simply be being a fussy.
Be prepared to advocate on behalf of your child to make sure that people, especially school staff understand your child’s behaviours and needs.
Try not to become stuck at home. If you have supportive family and friends ask them to come with you on short trips out so that your child does get to spend some time with people outside the immediate family and home environment.
Buy a trampoline!
Keep your expectations high for your child and plan for them to achieve as much as they are capable of. Try and get the balance between making changes to accommodate your child’s needs and pushing them so that they try new things to develop as people, at a pace they can tolerate.
5. What exactly is Autism? Did you know what it is when it was first diagnosed?
Autism is a lifelong developmental condition. It affects someone’s ability to communicate and interact with the world around them. Autism can present very differently form one individual to another and so it is often referred to as ASC (Autistic Spectrum Conditions) or ASD (Autistic Spectrum Disorders). I knew quite a lot about autism by the time Edward was diagnosed but not half as much as I know now!
6. What are the biggest challenges facing your child and your family?
At the present time we are in a good place. Over the years we’ve learned how to tweak our communication and environment so that it is Edward friendly. Throughout primary school we had different issues going on. Edward wasn’t happy at his primary school and didn’t have any close friends as he found it difficult to make and maintain friendships. Some teachers were brilliant but a few didn’t understand Autism. We had moments where Edward would be told off for behaviour when in fact he had unwittingly broken an, unknown to him, social rule. Punishment, for a crime he wasn’t aware of, would set off his injustice barometer and the situations could escalate quickly.
Edward is a natural mathematician, he does fit one of the stereotypes of Asperger’s syndrome in that he is brilliant when it comes to maths. We had a real challenge in year 7 as he totally disengaged with his maths lessons. His teacher was very focused on the importance of neat presentation and was not prepared to set more challenging work until Edward improved his presentation (which was unlikely to happen such was his boredom with the work set). After a chat with the teacher responsible for pupil progress Edward was allowed to skip two years and his enjoyment of school maths returned and we had a happier son again.
One of the biggest challenges for me is that Edward likes to know exactly what is happening and what is going to happen. He wants to know all the parameters and rules for different situations. This can be tricky as sometimes things change and sometimes it’s hard to verbalise exactly why you want something to be done in a particular way.
Dealing with “you’re being unreasonable/ that doesn’t make any sense/ why can’t you explain that better/ why do we have to do that?/ what do you mean when you say?” throughout the day can be wearing.
Another big challenge for me was learning not to be embarrassed by my son’s behaviour. Edward does not follow social convention. Sometimes he can say things that normally would be left unsaid and he is often very direct in his style of communication which can come across as rude, at times. I didn’t understand about stiming (the repetitive movements some autistic people make) when he was younger and I would get embarrassed by some of the jerky movements that he made every now and again. I rarely get embarrassed now – I’ve probably been acclimatised through experiencing so many social faux pax moments over the years.
7. What has been the greatest help for you, your child and your family in overcoming these challenges?
Understanding more about autism has given us a lot more patience towards our son. We understand why he can be pedantic at times and why he likes to know exactly what is happening when.
We are close friends with about 12 other families who we know through church connections. We’ve got into the habit of youth hostelling and camping for two weekends every year for the past 11 years – there’s about 45 adults and children between us. This wider family has been fantastic for all of us, but especially Edward. He’s had lots of experience mixing with kids his age, without having the pressure of having individual play dates. When he was little he tended to talk to the other adults in the group more than the kids but over recent years he’s mixing mainly with his peers.
Giving myself permission to be a “good enough” parent has also helped. I think it is easy for parents, probably particularly mums, to put themselves under tremendous pressure to be super parents, and then feel guilt when they cannot live up to their high expectations. Being ok with being a “good enough” mum has helped me a lot!
8. What has surprised you the most about raising a child with Autism?
I have learned so much about autism through Edward. He thinks about things and sees things quite differently from me and we have had some very interesting and often funny conversations as a result. When he was little he wanted to know if I would like it if my arms were longer than my legs! Before I had Edward I believed some stereotypes about autism. For example, I thought that autistic people preferred their own company and whilst this is true for some autistic people it is certainly not true for many, including Edward. He is surprisingly social and likes spending time with people although he does spend most of his time alone. He said to me recently, “mum, I am an extrovert but I think my autism tones me down a bit”.
9. What’s the main bit of/the best advice you’d give another parent who has a child with Autism?
Make it a priority to build their communication skills, resilience, self-esteem and confidence and make choices that will help them to develop these lifelong skills and characteristics. Don’t try and do this alone – find support from friends, family, charities and professionals. Make friends with other families so that you have a community – the old “it takes a village to raise a child” idea!
10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
I have found that most people, if they are open minded and prepared to learn about autism, are able to be understanding and make small changes to make life better for kids like Edward.
I’ve learned that if you want your child’s needs to be understood and met you have to become the strongest advocate for your child that you can be. You have to be polite and firm and insist that help and support is provided. If things are not going well, you need to be prepared to ask for a meeting and try and work together to find solutions. If things are going well at school its worth thanking staff by specifically mentioning the helpful changes they have made and explaining the effect their changes have had to encourage them to continue their good practice.
Parenting is hard work and parenting Edward was definitely more of a challenge when he was younger. He likes rules and if he has been involved in establishing and setting a rule he definitely sticks to it. Now we have a house hold with 4 pre-teen – teenage children he no longer stands out as being our most challenging kid! (I’m now pondering over whether or not that is a good thing!)
A massive thank you to Lynne for agreeing to take part in the series. I loved her answers particularly the advice to buy a trampoline and that it takes a village to raise a child and agree wholeheartedly about the need to be a strong advocate too.
Lynne started writing at “A blog about Raising My Autistic Son” in March 2016 – it’s full of funny and sometimes poignant tales of family life dotted with little nuggets of wisdom.If you would like to be part of this series please contact me.