I have been very lucky to experience what it is to be a mother to both children with and without Special Needs. I am thankful to have a child without a special needs condition or health concerns. To be able to experience what it is to have a happy healthy child that can speak, has friends, can go to parties, sleep overs, go out into the world without a care, who can fend for themselves and live a life away from home when she is ready.
On the other side I have also been blessed to live the life of a Special Needs Mother and I feel equally thankful as that has truly opened my eyes and heart to a world I had not really realised existed until I was pushed through its door many years ago. I am equally proud of my son’s progress no matter how big or small, and hope for the day when he too will be as independent & free as his big sister.
I have been given the opportunity to exist physically and mentally in the two worlds. At times I have found existing in both emotionally overwhelming when I see what my daughter is achieving and what my son may never achieve.
The day I became a special needs mother, my heart fell to the pit of my soul as I tried to grapple with all I was being told, simultaneously my mind raced to the future and back to the past realising my life had irrevocably changed in an instant. Thankfully as they say time is a healer and I have found my footing as a Special Needs Mother and learned a great deal along the way that I would not have otherwise been privy to.
When you become a Special Needs Mother you are unknowingly initiated into a secret society, where you carry your heart not on your sleeve but locked away deep inside protecting it as best you can from further hurt, You stay strong so you can continue being there for your children/partner and family. You keep your thoughts/feelings to yourself as you see the pained looks behind your partner’s eyes and you yourself see the life you expected for yourself/husband and children has vanished, instead you have a new unexpected life you are navigating through now as best you can.
I have decided to share with you just some of the Secrets of Special Needs Parent to help raise awareness of the reality of raising children with special needs in Ireland today and its impact on the silent Carers who now live a life unexpected.
We feel incredible guilt. I have obsessively thought over all I did when I was pregnant with Conor, wondering if something I did while I was pregnant caused him to have special needs. I know the reality is that I am not to blame but the guilt remains. I always have this cloud of guilt hanging over me that I am not doing enough for Conor or my other children. I should be doing more therapy with Conor, I could be more encouraging, I could spend more time with him. I could balance my time better between all my children. I should do this/that better. I feel terrible guilt that I did not realise from the moment he was born the suffering he would have been going through as a baby with Autism & SPD. I don’t think I will ever shake that guilt in particular.
We want to outlive our children with special needs. I have this dreadful fear/anxiety of what ifs/what will happen when I have gone from this world. What if Conor is unable to live an independent life? What if he grows into an adult and is not able to speak still? I generally try to take one day at a time as the thought of the future overwhelms me but if I could I would see Conor grow into an old happy man.
We grieve for the childhood our children were “supposed” to have. When I look at Conor I sometimes think of what he would have been like if he didn’t have Autism. I think about all the things he would be doing now if he was able to speak, go to mainstream school; have friends. But then I realise he is living a happy childhood and he is not aware of any other way of “being” himself. The grief comes and goes but I think it will be with me forever when I see my Daughter reaching life milestones that Conor may not be able to reach. I am always hopeful of progress and have great faith Conor will achieve great things in his life.
We feel lonely. When you become a Special Needs Parent your identity changes. I felt as though I had lost myself for the first year or so after Conor’s diagnosis. I would say I was vulnerable at that time as my heart was broken and I was trying to focus on what needed to be done to help Conor. I was trying to process what Special Needs meant to me, my family; our life going forward and at the same time find the right balance between my children so that I was meeting all their needs. You can imagine with such a new busy life, I lost a lot of friends as I wasn’t able to be present in those relationships on the same scale prior to Conor being born. You end up feeling lonely as you don’t know who to turn to/relate to.
We view the world differently now. For me this is the truest of all that I have written in this post. I really appreciate my life now, my children, my partner, my family. I value the little moments, the kind words from friends, smile from a stranger instead of a glare if Conor is having a hard time in a social setting. I have always had a great empathy for anyone struggling and in particular for any child/adult with Special Needs & their Carers, now more so then ever.
We become Therapists. When you have children with Special Needs, they attend various Therapy sessions where you the Parent are shown how to care for child at home. Your Child’s needs do not end once the Therapy session is over. You have to go home and carry on that Therapy daily until the next appointment providing relief to your child who may not be able to physically provide it for themselves. For example Conor on a daily basis requires; Occupational, Physical and Speech Therapy every single day and I provide that for him together with administering different medications he requires as a result of his diagnosis.
We look exhausted, because we are. I know that before I had Conor I would get at-least 8 hours of sleep a night, I would have time to myself where I would pick and choose what I wanted to do for leisure. From the moment Conor was born he did not sleep at all, I mean he literally did not sleep one whole night ever. He wasn’t able to sleep day or night at all. The only way to help him sleep was to hold him against my chest sitting upwards or driving him around the roads at night time, I ended up in Galway some nights (I am from Mayo!). When Conor was 2 ½ years old he was eventually put on a type of sedative which he still takes to this day to help him sleep as he has Insomnia. He still wakes at night and can stay awake all night, luckily that will only happen a few times per week. If you see a Special Needs Parent looking a wreck you will know why. Round the clock therapies and no sleep will do that to you.
We survive on Hope. I personally am always hopeful. I have seen huge progress in Conor in all areas of his life and I am very proud of the little boy he is turning into. I am proud of the smallest to the biggest improvements he has made as I know the amount of courage/bravery and dedication it has taken from him to progress. I will always be hopeful of progress.
We have yet to hear the words I love you or receive a kiss from our Special Children. For me this is true, hopefully for a lot of other Special Needs Parents this is not true. Children with Special Needs have varying degrees of abilities; Conor is non-verbal and as such has not spoken yet so I have never heard him ever say I love you. He has never given me a kiss either but thankfully will take plenty. I hope someday he will tell me he loves me and maybe give me a sneaky kiss or two as-well; that would be my dream. He shows his love in other ways so I know he loves me.
Thank you for reading my post, just by reading or sharing it with others you are helping to raise awareness for Special Needs Parents living a life unexpected. .