18th September 2017. Exactly one year ago my son was diagnosed with Autism, aged 2 years and 9 months. Coming to terms with the diagnosis was really difficult for me. I was grieving what could have been, the chance to even dream about the future had been taken away. I struggled a great deal to combat the grief , I knew I had to come to terms with the diagnosis in order to be the best mummy that I could be .
It was really tough because I felt so selfish and guilty for feeling the way I did. So I ignored it and it got worse. I was leading down a dark path. I told myself I wasn’t good enough to be his mum , that I didn’t deserve him because I wasn’t equipped, I didn’t even know what Autism was. I began to loose faith.
I don’t know exactly how I got out of that stage but I guess being able to talk with other special needs parents, health professionals involved and some family members I was able to keep going. So if your feeling this way please please tell someone and know that the time will pass. You will find a way to be strong for you and your child.
One year on and I’m so glad to tell you that so much has changed. In fact this journey has been life changing. I actively choose to live in the present, it makes me appreciate what I have. I now realise that my sons limitations are not limitations. We are finding more ways to communicate with Little Nut and vice Versa. We are teaching him in ways that he learns. I understand him and connect with him better. I accept my son for who he is. We have good and bad days and yes there are days that I’m just tired of fighting the world. But in all honesty I feel blessed to be his mummy . And you know what else ? Alhamdulillah (Praise God) I finally feel like maybe I got this !
So here’s an update on what’s been going on in the past year.
ASD Parenting Course
My husband and I attended a parent training workshop , it gave us an introduction to Autism, sensory challenges and communication. Of course we had the opportunity to meet other parents who were in the same boat as us, they were also trying to come to terms with the diagnosis. The course made me realise how crucial education and seeking knowledge about Autism was going to be for us. Before my Little Nuts diagnosis I really didn’t know much about Autism. I guess it was the fear of the unknown that made things more daunting. We had to and are still actively seeking out information in order to support our son in the best possible way. I also applied for the early bird course ,it’s developed by the national autistic society, so i’ll keep you posted on that.
For the past year Little Nut had been attending a playgroup specifically for children on the spectrum. I wasn’t going to share this but hey, why not?!
At the first session there was a little girl who was also nonverbal and she really liked hair. She was following my Little Nut around and focusing on his hair as it was quite long at the time. Every time he jumped up and down so did his hair and she liked it.
Little Nut realised that she was following him and continued running , he suddenly stopped and sat down on a bench. He was making a humming sound the whole time.
So anyway she followed and sat beside him. There was no eye contact from either of them but she seemed happy. As they sat on the bench Little Nut glanced over at her from the side and he gave a little smile .
For the first time I witnessed my Little Nut playing with another child. I cried my eyes out , I even feel emotional telling you guys about it now.
Okay… so … the playgroup is run by our local outreach team , they also do visits to Little Nuts nursery. They provide the staff with advice and guidance on how to best support him. The outreach team have been my go to , anytime we’ve had new challenges with meltdowns, difficultly with journeys , bath time etc they have been there with suggestions and ideas. I am so grateful to them!
Parent/Carer Support groups
I attended a handful of support groups just after the diagnosis . At the time Little Nut was only 2 and not yet in nursery. I stopped attending because all the parents /carers had children who were either in primary or secondary school . Most of the discussions were around EHCP issues and lack of SEN support. It was really insightful but some of the stories were just awful . Actually the sessions made me feel really down and I always felt miserable for days after attending so I decided it wasn’t for me. Looking back maybe it was just too early.
Special Needs Parents
So when I finally reached out to parents I realised I was not alone. Getting the courage to reach out was the hard part. I didn’t know any mums personally who had children on the spectrum or special needs. I suddenly couldn’t relate to any of the mums around me. Even my own mum couldn’t give me any advice.
So yes I turned to the the gram and I made some amazing connections. Special needs mums understand all the emotions , the struggles and challenges. They appreciate the value of the little triumphs and hurdles overcome, such as “omg he sat down in the bath tub today ” yes it’s a huge deal for us! No judgements , but being able to just share the ups and downs of life with someone who can relate to our “normal” is support in itself.
Portage is an education service for preschoolers with SEND. I found out about their services through a parent at the workshop we attended , so I self referred us. They provided us with home visits , gave us some fantastic play techniques and ways to best communicate with Little Nut. Most importantly they showed us ways that Little Nur could communicate with us. They introduced us to visual aids and gave different approaches to challenges we were facing. I witnessed my Little Nut go from zero interest in the portage worker and her bag of goodies to engaging in activities and looking at and using visual cards to make choices.
Portage provide families with information about accessing services and support available in the local community and after our positive experience I have been recommending their services to many families.
And just to let you know my little Nut has not been offered any speech therapy sessions since the diagnosis stage. I carry out daily play and speech therapy sessions with him at home. I’ve been self teaching, taking techniques from professionals and I have to mention that YouTube has been my best friend especially American mummy’s sharing ABA and speech therapy strategies. ‘You guys are awesome! ‘. We are currently on the early phase of pecs
“WE LOVE PECS!” .. had to put that out there!
There is still so much more to find out about Autism, hence why my Little Nut has also been participating in an Autism research study.
I know we still have many more hurdles to face but I hope this post will help mummy’s like me or at least raise awareness . We are not alone ! Trust yourself nobody knows your child more than you , so be their advocate. Our children are a blessing! And please please remember DIFFERENT NOT LESS!
Read more about our Autism journey here