Featured - Part 27

Counteracting the Disappointment of Birthday Parties

November 4, 2015/by Reneé Davis

There is only one thing worse than my 6 year-old high-functioning autistic daughter Polly not getting invited to birthday parties, and that is getting invited to birthday parties!

My girl has suffered from allergies forever, and has been on a heavily restricted diet since she was 2. Cow’s dairy, gluten and corn-derived ingredients (of which there are many) are all on the banned list. I cook from scratch when we are home, but it can make life difficult when we eat out, and especially so when other people are catering for us.

Birthday parties are at the top of my list for causing stress and upset all round. In the early days of her allergies, and before her autism diagnosis, I thought I was doing the best thing by not making a big deal out of her being different to the other kids. I remember crying inside on her behalf when we arrived at the first-ever school friend party, and it was apparent there was absolutely nothing that she would be able to eat.

I watched her stare longingly at her friends stuffing their faces full of sweets loaded with corn syrup and cheap bread sandwiches. I witnessed the searing disappointment take her over, and knew that a huge meltdown would be on its way the second we got home. Next time around I went armed with back-up supplies to ensure that she wouldn’t have to go through that again.

It didn’t take me long to realise that the food would be a problem almost every time she went to a party, and that I had to figure out a solution to offset the heartache. So over the years I’ve come up with these fail-safe autism/allergy hacks that go some way towards counteracting the inevitable disappointment.

I contact the host in advance to find out what food they’ll be serving. If it’s a hot meal (such as pizza or nuggets and chips), I prepare a similar allergy-friendly version of the meal for Polly to take with her in a silver foil container. That way she can join her friends when they are eating and not feel too left out. If it will be a standard buffet of sandwiches and sweets, I send her with a bunch of her favourite snacks.

We always arrive at the very start of the party, which means that Polly gets to spend some time with the birthday boy or girl before the other kids arrive en masse, and it gets too hectic. We often leave a little early to avoid the crowds at the end.

Even if most of the other parents are leaving their kids alone at the party, I stay. That way I can keep an eye on Polly, and pull her aside if I can see that she’s getting overwhelmed.

Praise, praise, praise! Throughout the party and afterwards I let her know how proud of her I am, and how well I think she’s doing. This means so much to her, and makes her feel really grown up.

I never expect the host to do anything special for Polly, and am always incredibly touched if they do. We went to a party earlier this year, and the mum knew all about her allergies because she volunteers at her school. The mum had asked me in advance what her favourite snacks were, and when we arrived there was a whole tray of food just for her. To say that Polly was in seventh heaven would’ve been the understatement of the century! The photo above shows just how happy she was.

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After surviving a severely dysfunctional upbringing, Reneé is determined to ensure that her own children have a better start to life than the one she had. Last year she wrote her first book. Become the Best You is part memoir, part self-help, and details how she ditched negative influences and behaviour to break the cycle of dysfunction.

Read more from Reneé by visiting her website, Mummy Tries or follow her on Facebook.

Not Necessarily Friends, but People Who Love Him

November 2, 2015/by Geraldine Renton

Ethan doesn’t have ‘friends’ like you or I have and this used to upset me.

Yes, it used to upset me, but not so much anymore. This took a long time for me to come to terms with. You see, I wanted friends for Ethan but Ethan didn’t really care.

Ethan is a very friendly little boy. He loves nothing more than grabbing, hugging and kissing people…just as quickly he can punch, cry, kick and bite the very same people he was loving on a few moments ago.

These behaviours led me to become a ‘helicopter’ mom. Yes, I’m open and proud that I am that mom!

Ethan has no idea how to ‘behave’ in social settings. Ethan is Ethan. He has no sense of personal space, which makes making friends with his peers very, very difficult, for all involved.

Ethan gets so excited that he will shove, kick, bite and laugh due to the sensory overload of just being around people. He is happiest around people; he is the most hyped up overexcited kid begging to be regulated when around people, especially people his own age. (Ethan stands at under 4 feet tall; his level of understanding is that of an 18-month-old; he is 13 but goes straight to 4- to 5-year-olds as he believes they are his peers.)

He sees no danger. Every child is approachable (i.e., fair game) to Ethan, which has obviously helped me perfect my ‘helicopter’ mom moves!

I don’t like explaining Ethan’s behaviours to parents. Sometimes I get the eye rolls and the tutts and, to be perfectly honest, sometimes I deserve them. I am not always as quick as I should be. Because it is me that knows exactly what Ethan’s behaviours in social settings are like, I take the tutts and eye rolls on the chin.

I apologise to the parents, the child (children) and any small animals that may have gotten in Ethan’s path, but really, what else can I say? If it’s a full-blown meltdown, and not a hyped-up Ethan (Meltdowns can be triggered if Ethan is forced to wait somewhere for an appointment or if Ethan was in a busy supermarket and had enough–where Ethan will hit out, scream and shout the ‘F’ bomb at me, you and whoever else is there), I tend to explain a little while I sit rocking with Ethan on the floor.

Ethan has attended two special needs schools. In his first school, he made no friends. This didn’t shock me, as the children attending that school were cognitively more advanced than Ethan. Considering Ethan’s syndrome is progressive, the writing was on the wall: Ethan needed to change schools.

His current school is a better fit, but still no friends (as such). He has a few classmates who I am pretty sure get on with him, as I have not had many calls since he started this school (regarding his behaviour towards his classmates, that is).

So, Ethan has no friends who call by. Ethan has never had a friend over for a playdate; nor has Ethan gone to someone else’s house for a playdate. And that’s okay.

Ethan does, however, have a family support worker called ‘G.’

G has been Ethan’s buddy for nearly five years now. They go out once a week together for 2-3 hours and do whatever Ethan happens to be obsessed with for that week. It is, of course, a form of respite for us. Ethan loves G and G adores him right back. It is a friendship; a very important one to all involved. G has coffee with me every week and has become a part of our little family.

‘E’ is Ethan’s home nurse. We have only known E for a year but, to be honest, it feels like she has always been part of our family. Ethan absolutely loves her. She finds it hard to get her work done as he insists on sitting on her lap, kissing and hugging her. She has yet to refuse Ethan anything he asks of her. E and Ethan have a wonderful friendship.

‘A’ is one of my best friends. She lives near me and spends a great deal of time in our home. She is great at keeping me sane, but also an amazing friend to me and my family–all three boys and my husband. Ethan adores her. She is able to read him and engage with him; she is his friend.

Ethan has two younger brothers: ‘J’ and ‘D.’ They both play, engage and have fun with Ethan when Ethan initiates it. They also know when Ethan is close to a meltdown or a sensory overload. They know when to back away and leave Ethan to regulate himself, which he does rather well.

Ethan doesn’t have friends like you or I do, but that’s okay.

Ethan has plenty of people who genuinely love him, understand him and enjoy seeing him. He has people in respite who enjoy him, people at school who laugh with him, and he has us.

He will always have us.

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By Geraldine Renton

Read more from Geraldine by visiting her website and Facebook page. Geraldine began to write privately as therapy and recently began writing publicly about learning to live, love and laugh again since her son was diagnosed with Hunter Syndrome.

My Autistic Sons Are MY Teachers

October 30, 2015/by Amanda Mc Guinness

I always thought that when I became a parent I would spend my days loving my children, helping them to thrive and to progress–helping them to become the best version of themselves they can be. I thought I would have a dual role, as mother and as teacher.

What I have come to realize in the years since Conor was diagnosed with Autism, and more recently again when his younger brother Jack was diagnosed, is that in fact my Autistic sons are MY teachers. I have learned, or should I say re-learned, a lot about life since they were born. They have taught me so much with how they view the world, how they live their lives, how they show love to us and their big sister. They have taught me:

Love Has No Words – Both my boys are non-verbal, yet with a heartfelt look from either I instinctively know how they feel, that they are happy, that they feel love, that they love. You can scream your love from the top of your lungs but that real look of love needs no words: It transcends all barriers.

To Be Kind – neither Conor nor Jack show any malice at all towards anyone or anything. They are always kind. If I drop something, Conor will almost always be the first to pick it up. If I bang into something, Jack will waddle over and rest his tiny head against me as if to say, “It will be okay, mammy.” Conor always shares his toys and sweets with his sister Hailey; he never stops her or baby Jack when they want to have some too. He just smiles and lets them.

Different Is Not Less – They have taught me the real meaning of “different not less.” They are different but no less amazing, lovable, sweet or kind to any other boy their ages. They are different and that is what makes them beautiful.

The Value of Real Friends – Neither of my lovely boys have many friends of their own. It hurts my heart from time to time when I think of them this way. But then they help me realise that the few friends they do have are very “real” friends who adore them just as they are. They remind me that you don’t have to have a million friends to be happy; just a few real friends and I know I am lucky and loved.

Opinions Don’t Matter – Conor and Jack are completely oblivious to anyone’s opinions of them. You can catch Conor busting a move in our local shop when his song comes on the radio; he is just happy to dance and it doesn’t bother him that people stop and stare. He makes me so proud with how brave he is. Jack has no filter for opinions either. He is happy to carry a shoe around with him in his right hand for most of the day, or wear a little cloth on top of his head because it makes him feel happy. He is oblivious to what is considered “normal”–he is his own version of normal. I am so proud of both of my boys and they remind me to always be myself because those that matter won’t mind and those that do mind don’t matter.

Celebrate the Small – In the past I would wait for “big” events in my life to celebrate achievements. The boys have taught me to celebrate the everyday small steps of progress. What many people take for granted in their lives will usually be a massive struggle for my boys to overcome. I always celebrate the achievements, no matter how small, because I know the heartache and persistence it took for my boys to achieve a new goal.

Live a Happy Life – Conor and Jack are their innate selves. They do not know any other way of existing and they are happy just as they are right now. I see them smiling to themselves from time to time; a walk outside in the fresh air can bring them such joy. They make me realise that we should all be happy to be alive! You only get one life; you only get once chance to live your life. Why not make it a happy, positive experience? I have faced a great many challenges since having my lovely boys; I have seen them overcome so much since their births, yet they do not look back. They look forward and are happy to be alive, living a life full of fun, full of hope and, most importantly, full of love.

I am and will always be thankful for my three beautiful children and my very special teachers: They have taught me the real meaning of what Life and Love are all about.x

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Amanda gave up her law career after her first son Conor was born with special needs, later retraining as a Special Needs Assistant so she could help him and her youngest son Jack. Amanda and her family live in Co. Mayo in Ireland. She spends her days now carrying out therapies, preparing visuals for her boys to communicate and doing her best to be a good mom to all of them, including her oldest child Hailey.

Through her writing she helps to provide an insight to what living, loving and raising children in a Special Needs Family can be like for so many people today. To learn more please visit her website littlepuddins.ie or follow her on Facebook at https://www.facebook.com/thelittlepuddinsblog.

Finding Strength Through the Struggle

October 29, 2015/by Rachelle Wade

I saw this quote several months ago, and it hit me. It touched something in my soul. I immediately wrote it down in my journal, and then wrote my own words underneath.

This whole mothering thing is a tough job. It’s a constant battle of knowing what to do and when to do it. When to say a lot and when to say a little. There is continuous doubt about whether we are doing it right. The amazing thing is that, no matter how scared or unsure we are in ourselves, or how many times we “mess up”, we find the inner strength to keep going.

Then, I set my pen and journal down and didn’t pick them up again for months. Why? Because I wasn’t sure what to say. I normally have my stuff together. Not now. Right now, I feel slightly defeated. I know that’s not a positive thing to say. That’s part of the reason I haven’t written for a while. I started writing this blog almost three years ago because I wanted to be a light to all of those moms (and dads) who needed it. I didn’t want to write the sad posts about how hard this whole “Autism Mommy” gig really is because who really wants to hear that?

Last week I was determined to write again, so I sat down and grabbed my pen. This is what I wrote:

Struggle is the word of the day. As I sat down this morning with my journal and a cup of coffee in hand, all I could think about was my recent struggles to get my thoughts from my head to paper. As I started writing my rambling thoughts, there seemed to be one resounding theme…”Everything is a struggle.” I struggle with how to parent. My oldest son is being incredibly difficult most days. My youngest son is acting out. My confidence as a Mom has plummeted. My thoughts are foggy. How am I going to be a “Sassy Aspie Mom” when all I have are “Debbie Downer” thoughts?

As my oldest son with Asperger’s enters this new stage, I just hope I am able to give him what he needs. Sometimes that seems like an impossible task. I find myself wanting to pull back and allow him to become his own man. I struggle with allowing him to fail. I struggle with knowing what my role actually is at this time of his life. Some days he still needs me a lot. Other days, he doesn’t want me around at all. He is struggling to find his way. I am struggling to find my new role in his life. His new responsibilities on his path to become an adult are starting to overwhelm him, and I am struggling to help him navigate it all.

After I wrote those thoughts, I closed my journal and put my pen down. I sat and drank my coffee and then went about my day. Writing is normally my therapy, but lately, I just haven’t had it in me. I haven’t had the ability to give advice or even tell a great uplifting story because motherhood has truly been a struggle.

This morning, I grabbed my journal because I needed to write again. I wanted to get my thoughts on paper. Before I started to write, I looked back at my last few entries and realized that I had already written what I needed to say. My story was written in those small journal entries when I didn’t have anything left to give. It wasn’t uplifting or funny. It was just the true story of this “Sassy Aspie Mom’s” life. Right now things are damn hard. Parenting a child with Asperger’s through the teenage years is definitely a struggle, and my story is no exception.

The truth is, birth is about making strong competent, capable mothers, but strength isn’t given to us. Rather, it is earned through pain and tears and fear and doubt and love and compassion and accepting our mistakes and loving ourselves despite it all. It is because of those struggle, not in spite of them, that we finally begin to trust ourselves and gain that amazing inner strength that makes motherhood such a gift.

— Originally published by Sassy Aspie Mom on October 26, 2015. Republished with Permission.

Read more from Rachelle by visiting her website and Facebook page. The blog focuses on her daily life: being a wife and the Mom of 2 boys, and raising a child on the Autism spectrum.

The Right Place. The Right Time.

October 26, 2015/by Alan Dunn

Words can rarely ever express my thoughts on Autism.

Some days I feel robbed, other days I feel inspired but most days I feel overwhelmed. However, there is one thing I am pretty consistent about.

When somebody tells me “It was not supposed to be like this”, I cringe.

What exactly was parenthood supposed to be like?

Full of children who play sports, excel in school, win scholarships and are on the popular team?

Please tell me. I am dying to know.

The last time I checked there is no roadmap for this stuff.

Some children have disabilities, some children are slow, some are dorky and some (maybe yours) is an asshole.

Parenting is not about what anybody was supposed to get.

It’s about what you have.

Raising a child with Autism is difficult. At times it pushes your limits. Other times it makes you revel in joy. Sometimes you even surprise yourself.

This is real life, not reality TV.

Every day feels like victory and I can only imagine what it feels like for his Mom.

Right now is supposed to be the time when … Oh hush.

Right now is right now.

You are here. You are his parents. He loves you unconditionally.

You have more than most people in this world already.

Enough of about what is supposed to be like. I am here, exactly where I was supposed to be.

I love you my son. Forever and More.

Dance in Your Storm

October 22, 2015/by Angela Conrad

Being a special needs parent is not easy by any means. We face daily struggles that most parents could not begin to fathom. We live in a world that caters to neurotypical people, therefore leading us to always have to fight for our child’s rights. Most days we feel like we are living in the middle of a huge storm that will not stop. The storm follows us everywhere and controls our life.

The battles that we deal with each day during the storm are never-ending. The battles we fight with our children leave us absolutely exhausted both physically and mentally. I do believe every parent of a child with autism can admit that they “pick and choose” their daily battles.

Before we know it, our lives revolve around speech therapy, occupational therapy, physical therapy and applied behavior therapy. Our daily choices revolve around our child. We have much more to think about before planning or attending any type of event, even if it’s an event for Autism Awareness. This all leads to trying to explain to family members and friends why we can’t attend or why we have to leave before the event even starts. The struggles are there daily and, unfortunately, they never go away. The storm is here to stay.

In the midst of all the turmoil and struggles in our storm, there is joy and reason to smile. We must learn to brave the storm that we are in and dance in the rain. I am by no means one of those parents who claims that they wouldn’t take autism away from their child if they could. I admit that I most definitely could, if that was possible. Yes, autism helps define who my child is, but what parent wants to see their child struggle in life because they are non-verbal and can’t communicate? It hurts to see my child have to spend his whole childhood in countless therapies. It is beyond painful for me and my child to spend our nights awake because he doesn’t sleep. The list of the struggles that autism leaves us with could go on and on. So yes, I would take it away if I could!

However, we all know that that is impossible. Even though I can’t take it away, I can help ease my children’s struggles in many ways. I can be there for them when they need me. I can sacrifice for them because they know all too well what it is like to live in a world that does not adapt to their needs very well on most occasions. I can show them my unconditional love each minute of their life. I can be what they need me to be for them and I can’t do that without finding the pure joy in every occasion. I can be their voice during our never-ending storm. I can’t be who they need me to be without learning to dance in the middle of it.

Don’t get me wrong. I have moments when it is hard to find joy, especially when the day was spent dealing with meltdowns and heartache for the majority of it. It is hard to find the joy when you are so sleep deprived you don’t even feel “normal.” Nonetheless, if you can find some kind of joy and happiness in each and every day, you will be amazed at how much brighter you can make your journey during your storm.

Even if it is a few minutes of eye contact for the day, embrace that moment! We know all too well that we have no idea when that next moment will be. It may be the simple way your child touches you. There is something each and every day to praise your child about and to be joyful for!

As autism parents, we have learned to celebrate and appreciate the little things in life. We have to hold onto those little things and not lose hope. We have to dance in our storm and make the best of it.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

Sesame Street Introduces Julia – a Muppet with Autism.

October 21, 2015/by Alan Dunn

We absolutely LOVE this. Sesame Street is the definition of Ausome™ today.

Autism Daddy mentioned a couple weeks ago that Sesame Street had a big autism initiative coming and, well, you never doubt Sesame Street.

One visit to autism.sesamestreet.org will show you how dedicated Sesame Street is to creating broader awareness of Autism. The campaign is called Sesame Street and Autism: See Amazing in All Children and has the slogan “Celebrate the uniqueness of each and every child.” We couldn’t agree more!!

If that wasn’t enough, Sesame Street has also introduced the first Muppet with Autism – Julia.

Sherrie Westin from Sesame Street told PEOPLE that “Families with autistic children tend to gravitate toward digital content, which is why we created Julia digitally.”

Smart move, Sesame Street. Smart move indeed.

There is so much goodness in what Sesame Street has done today and if you have time, browse around Sesame Street’s YouTube page. Not only will it show the Ausome™ “The Amazing Song” video, but on the right side you will see heartfelt stories from people like Christopher Jackson, an actor/writer who has a son CJ with autism, referring to his journey as “a beautiful struggle.”

So much greatness here. So Much.

Unspoken Bonds – by an Autism Mom.

October 15, 2015/by Ms. M.

“It feels as though I had a string tied here under my left rib where my heart is, tightly knotted to you in a similar fashion.”

I don’t know about you, but I have always been a sucker for a good old bit of escapism into Jane Eyre’s world of period costumes and romantic drama. And without fail that line always leaps off the page right at me every time I read it. That magical connection between two people that needs no words. No explanation or thought. It exists…… just because!

This is how I feel about my children. They are my world and I’m connected to them through invisible bonds. You see, they will always be part of who I am. It’s instinct, and I just feel it – like string connecting our hearts together.

I feel their pain; I share their joys and laughter. I worry when they worry. When they cried as babies I knew what they wanted. When they stir in the night I am there to soothe them. When they need care and love, I am there. No words are ever needed, because I’m their mum.

I have close relationships with each of my three, and my girls are growing up to be wonderful young ladies. I can see their independence developing; and their personalities blossoming, as bit by bit I slowly have to loosen the string that connects us. They have their own minds; and ideas, and they will leave me one day to live their own lives with their families. That bond will always be there but I will have to let it stretch some more to let them go when the time is right.

My relationship with my Autistic son feels somehow different. Our strings are still connected as tight as ever, if not tighter. Maybe it’s because he can’t always express himself, or because people find it hard to understand him. Perhaps it’s because I am so fine tuned to him after 11 years of being his safe place. But I just know that I get him – because I’m his mum! We are interlinked. He trusts me; and relies on me to get through his day and that leads to something wonderful and unique as a mother. Yes things are tough but there is so much to be thankful for too. When things are good, they are amazingly good. However, as ever life has a habit of throwing little obstacles in our way, like this week for example –

Rather inconveniently I developed a painful mouth abscess on the nerve of my tooth (that I really could have done without). But as a result I had become shattered on the medication, and had to keep sneaking off to my room as a way of coping with the pain. It hurt to talk, and move my head, and you could say I was feeling pretty sorry for myself. I am ashamed to admit my kids ate take away on a school night, and ready meals that pinged in the microwave! My floor didn’t see a hoover for three days… and, well, my hair didn’t see shampoo for three days either if I’m honest!!

As the days passed and the routine of home disintegrated, I could feel my son’s anxiety ramping up as a result. He was stressed and worried about me but just couldn’t express it. I had become distant because of the pain; his routine was out of sync and I was being a rubbish mum.

After a particularly manic half hour, in which I was close to losing the will to live – whilst trying to get him to take a shower, my son (who, bear in mind has Autism, and struggles to express himself) floored me with this comment-

“Mum, I feel your distress like a whale call.”

It hit me – Just like I feel his worries and pain, he feels mine.

He couldn’t explain that it was making him anxious; or defiant, he just knew he could feel it. He could feel something wasn’t right. Like a whale calls out to its mum in the ocean. It’s just his instinct.

I realised that, just because he is Autistic – and he can’t always articulate how he feels, that doesn’t mean he isn’t feeling it. In fact, if anything I think his Autism amplifies his feelings all the more.

My girls – Yeah they gave tea and sympathy. But my son… he felt it. He felt a knot in the string that connects us, no words or explanation needed… He just felt my distance and it confused him. His instinct told him something was out of sync.

There’s so much about Autism we don’t understand: wonders and talents that lie yet undiscovered in our kids. My son seems to feel the world around him; it’s all amplified. He smells and touches and sees things that I take for granted. So what that language doesn’t come naturally to him, because he works on an instinctive level that I can only glimpse when I view the world though his eyes. Children like my son have a lot to teach us about relationships and love. He just feels it. He doesn’t overanalyse and complicate with words. He feels the bond he has with others and holds on tight… just because!

Mrs M

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Read more from Ms. M. by visiting her blog http://asliceofautism.blogspot.com/ or like her Facebook page https://www.facebook.com/sliceofautism today.

Three Simple Words: I’m with Jack

October 14, 2015/by Rachel L. MacAulay

Lana loves her brother Jack. After all, she taught him all about tickling.

She learned from him that autism can be hard and “being different can mean you need a friend even more.

As you can see from this fantastic video that 9 year-old Lana made, Jack may have autism but he isn’t alone. Crank up the volume–this one will leave you smiling.

It Will Be Alright, Mammy

October 11, 2015/by Amanda Mc Guinness

Tears welling in his beautiful eyes, he places his tiny hands on my face, bringing me close to his. With our noses all but touching he gazes; drawing me deeper still, hoping if he looks just deeply enough I will know what his heart aches to say but cannot. At moments like this, my own tears flow easily as his pain washes over me. I wish just then I could go back in time to when I was pregnant with Conor and magic away his special needs, releasing him now from this heartache.

Just shy of 18 months old, Conor was finally diagnosed with Autism, Sensory Processing Disorder, Developmental Delay and related Insomnia. Sitting with Conor on my lap in a small hospital cubicle on a hot, sunny August day, the words melted in slow motion from the paediatrician’s mouth onto the floor. I remember I couldn’t lift my head to look up while she spoke to me; the floor pulled me down to where her words lay. Listening to her explain, Conor smiled up at me as if to say, “It will be alright, Mammy. We all know now.” I finally understood then why my lovely Conor was slipping away before my eyes.

By the time he was diagnosed, Conor had been consistently awake every night since the day he was born, screaming, exhausted. He spent months at a time not eating at all, couldn’t hold a bottle, had only just learned to sit up and couldn’t yet crawl or walk. Eventually he became oblivious to us all; no longer recognising his own name, no longer speaking. He didn’t notice his sister Hailey’s pleas to play with her. He was aloof, body rocking, hand-flapping oblivious. It was Autism. The little boy I had dreamed of had gone.

I felt lost for so long afterwards; I had panic attacks, blackouts with stress. I was so unsure of everything. How could I help my little man? Was it my fault? Maybe I didn’t hug him, kiss him, love him enough; my heart ached with pain. What about Hailey? She missed having Conor to play with and talk to. She asked all the time when Conor would talk—maybe Santa would bring his voice back. I didn’t know how to explain it to her without hurting her heart. One day she waddled over and gave me a squeeze. She looked up with her piercing blue eyes and, in her three-year-old wisdom, said: “It okay, Mammy. Conor here.” She was right; he was still my lovely Conor and still her handsome brother.

I always had a vision of what being a ‘mammy’ entailed, yet Conor has helped me to look far beyond that horizon; to look to the future always. To stay positive even when it seems all but impossible. I have learned to be a new kind of Mammy since having my gorgeous Conor. During the day I carry out Physio, Occupational and Speech Therapy. On nights when Conor can’t sleep at all despite medication, you will find me up watching that he doesn’t hurt himself as he dances and giggles the hours away.

Lately, I see how it plays on Hailey’s mind more than ever, asking when he will talk. She can’t wait to finally have someone to talk to. At the same time, I watch her with Conor. She’s always the first to take his hand, to protect him, to say “Good boy, Conor” when he masters a skill most of us take for granted. She is his biggest fan, and has a heart filled with optimism and empathy. Recently, when someone was laughing that her brother couldn’t talk despite being five, she asked the boy: “How would he like to be 5 and not be able to talk?” She said later that little tears came out but she pushed them back in. My heart broke with pain, yet with pride that she is the next generation we are raising who will protect and look out for the many vulnerable people in our world.

I am thankful every day for Hailey, Conor and their baby brother Jack. Collectively they have helped me see what matters most in life: the sleeping faces I kiss good night, the squeezes little arms can give each day and—please God, someday—the words my little ones will say.

I love you Hailey, Conor and Jack. x

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Through her writing she helps to provide an insight to what living, loving and raising children in a Special Needs Family can be like for so many today. To learn more please visit her website littlepuddins.ie or follow her on Facebook at https://www.facebook.com/thelittlepuddinsblog