What I learned this past year

Jack "helping" tidy the Christmas Tree last Christmas.x

Jack “helping” tidy the Christmas Tree last Christmas.x

Jack

Looking back on 2015 so much has changed and yet in another way it hasn’t really, I just didn’t see what was in front of me until it couldn’t hide out any more. Christmas Eve of last year I didn’t know that baby Jack would soon start to prominently show the early signs of Autism. He had just started to say Mama and Dada and “no”. I remember writing a post on my own Facebook Page so excited that he had said a new word, thanking my lucky stars my gorgeous boy could talk, and would talk.x It hurts my heart a little now to look back on last Christmas, I am glad I didn’t know sooner than I did because I loved having him all to myself before I realized things were going to change.x

At that time just before I was told Jack was Autistic I remember always seeking everyone else’s confirmation that they thought he was “fine” that he was doing what all babies do, yet I always had this lonesome thought at the back of my mind when I would see him do unusual things. The inexplicable laughing, the obsessive lining up, the need to constantly hold two objects at all times. Autism started roar from within baby Jack, it wouldn’t quieten down any more and my lovely boy started to get lost inside just as Conor had.

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Jack at Christmas 2014

I guess I still miss those days before I knew because back then I had hope it would all be alright. Conor would always have Hailey and Jack to look out for him as they grew up together, Jack and Hailey would speak up for Conor, Jack would help Hailey physically with Conor when we were gone from this world. I never imagined what was to be, I am glad for my heart that I didn’t know until I did.

In the last 6 months Jack has been diagnosed with Autism, and SPD, lost his ability to speak, no longer says Mama, Dada, and can’t say “no” anymore. I won’t let myself become used to the only voices in our house being my own, my husbands and my daughters. I ask God every night before I go to sleep to make the day I hear my lovely boys voices  come soon because I so want to hear them above anything else, I’l keep Autism, I’l love SPD, but just to hear them say “Mama” once more, that is all I want. I never thought that a Family of 5 could ever feel so lonesome sometimes.x

When I see Jack trying so very hard to speak, trying so hard to make sounds and then he cries with the frustration of not being able to, my heart breaks again. His sad lonesome cry when he can’t line up his lovely little blocks just straight enough that they can make him happy in a way I never could; make me wish Autism, SPD and regression would just disappear so I could have the Jack I thought I had back.x Not for me but for him so he could magically talk, he could say all the lovely things he would so like to say, he could tell me why it is so important to have all his blocks lined up in the same patterns he lines them up in everyday, so he could tell me why the Nursery song “Bingo the Dog” makes him laugh until his sides hurt, why he loves the color blue and loves the number 10 but hates the letter “F”. I just sometimes wish Autism would disappear for a little while so we could really talk just like I had dreamed we would have if things had been different.

My gorgeous baby Jack.x

My gorgeous baby Jack.x

Finding out Jack has Special Needs has taught me to love every moment I have with my children as you never know when things will change irrevocably. Jack is still my lovely baby Jack, just as cute as before, just as sweet, just as lovely, my special little man.x 2015 makes me realize I should always cherish my lovely Hailey, Conor and Jack, because without them my dream to be a Mummy wouldn’t have come true. They are my heartbeat.x

Hailey

This year I learned how incredibly brave and courageous Hailey really is. At the same time I learned I am not as strong as I like to think I am, Having to tell her that baby Jack has Autism and can no longer speak was one of the most hurtful and painful conversations I have ever had to have with her. I learned from that conversation that Autism, her brothers not being able to speak, not having anyone to talk to herself has bothered her a lot more than I realized and has made her feel lonely and sad, for that I will always, always be so sorry.x

My best girl Hailey.x

My best girl Hailey.x

Worry & Guilt

I think every parent will tell you that they worry they aren’t doing enough to help their children, that they could be doing more, that they are sorry they don’t spend enough time with them, I know I feel like that constantly. I became very unwell with a viral bug just before Christmas and it was only then when I couldn’t get out of bed with sickness that I realized that I really do a lot everyday with my lovely Hailey, Conor and Jack. While I was unwell their therapy needs weren’t met as often as it’s a two person “job”, they didn’t get out of the house as often as they normally would. I felt so guilty lying in bed so sick but it gave me time to realize all that I do, do and to not feel so guilty and bad that I am letting them down all the time.x I have learned this year to accept I can’t do everything as much as I would like to. I know now that I should do the very best I can and that is more than enough.x

Words

This year I learned that in some ways I am stronger then I was a year or so ago. Very recently some not so nice things were said to me about Conor and Jack by a lady when I was out one night. I don’t often go out at all so I guess maybe it was a sign to not bother going out anymore. I learned from that night that I am so lucky to have amazing brothers, sisters and sister, brother in laws; all with huge love for Hailey, Conor and Jack. A lady said some very unkind things about my lovely boys, I wasn’t angry as I know sometimes with alcohol people say things they hopefully don’t mean, I stayed calm but my lovely brothers and sisters were very upset and hurt by what had happened and asked the lady to leave the private house where we all were. I was so proud to be their sister (well I always am but on that night I was beyond proud) as they handled themselves so well but showed me how much they thought of Hailey, Conor and Jack to stand up for them. The lady has since apologized and we have moved on.xIMG_3372[1]

I think any parent of a child with Special Needs will tell you that you have to grow a “thick” skin as sometimes people say not so kind things by accident and sometimes they mean it. I have learned this year in particular to stand up for the boys always (I always have and always will) but to also always look at the bigger picture, sometimes people make mistakes (I know I make plenty) so give everyone a second chance if you really feel it wasn’t intentional. I have learned to also accept sometimes people say horrendous things to provoke reaction, to hurt, instead of getting angry I always tell myself to not let “their” issues be my own. Everyday of every year people are going through things others no nothing about so I try to always be as objective as I can when sometimes unkind things are said to me.x My brothers and sisters said to me afterwards how was  I so calm and I told them the honest truth – you learn once you become a Special Needs Mummy to be as strong and calm as you can in uncertain situations, your child depends on you to be their voice, to stick up for them. I told them that unfortunately over the years many horrendous things have been said and shouted at me when I had to bring Conor out when he was really struggling, it is one of the hardest parts of being a Special Needs parent that many don’t talk about. 99.9% of the people who have put their “foot” in it mean no ill-intent, there is of course always “one” and it is how you rise above that “1%” that defines you.  2015 has taught me to stay calm and be strong when it is all you have left to hang on to.x

Conor

This year I learned to forget “will not”. I remember going to Hailey’s first school play a few years ago and on the way there having a quiet cry to myself as I didn’t think all those years ago that Conor would ever be able to be in a school play. I remember a lump in my throat forcing it’s way up as I watched her on the Altar, I was so proud of her that night but at the same time I was lonely for what I thought “will not” be for Conor in the future. This year he was the cutest Camel (well in my opinion and I am biased lol!) in his fab Christmas Play with his classmates from the brilliant Knockrooskey National School. His fab teacher Noelle and lovely SNA Jenny had worked with him, preparing him for what would happen and because of all their hard work helping him he did brilliantly. That is one of the many things  I love about his brilliant school, Conor was on stage with children from the entire school not just the ASD, there is no divide within his brilliant school between the children with and without special needs, they are all the same happy children.x He was just like everyone else, excited to be on stage making all their parents so proud. They helped him to help himself, he sat happily and sang in his own way to all the lovely songs.x It was lovely as well for my husband’s family and my own to come along and watch Conor on stage, thriving and happy.x

My Cute Camel Conor.x

My Cute Camel Conor.x

When you receive a Special Needs Diagnosis you can feel as though only negativity awaits your child’s future but I have learned the opposite to be true in 2015. It won’t always be easy for Conor or Jack but I know they both have the ability to “try” and I have learned to not automatically expect that they “will not” be able to challenge themselves.

Mayo Autism Support Association

This year I learned it is good to take some time away from home. My day to day life is stressful, if one or both of the boys are having an especially hard time it creates havoc, as they can’t speak to tell us what is wrong so it can escalate very quickly, stressing everyone out.x I learned this year that support, family and friendship is so important.x Through the Mayo Autism Support Association I set up, myself and an amazing group of ladies (and men lol!) have found kinder’d spirits, all walking the same path.x We went out for our first Christmas Party Night out in early December and it really was such a brilliant fun night. I stayed in the fab Breaffy House for the night with friends and it was so nice to wake up with a sore head that wasn’t from lack of sleep for once lol! We had a brilliant night and I am so very thankful to be able to call all of the members of Mayo Autism Support Association my friends.x

At the Mayo Autism Support Christmas Party with my party hat that won't fit my large head lol!

At the Mayo Autism Support Christmas Party with my party hat that would’t fit my large head lol!

Health

This year I have learned it is so important to look after your health. The past number of months I have been so busy with my Blog, travelling, looking after my gorgeous children, going to appointments, carrying out therapies for both the boys, giving Hailey her own special time, that I became very ran down and fatigued. I ended up becoming very unwell for most of December and had little to no energy at all. December ran away quiet literally. I had many brilliant plans for blog posts and printable downloads but I ended up bed bound for a time as I was so unwell. Then myself and baby Jack both a had a terrible bug for most of the Christmas holidays. I have learned that you have to look after yourself, not for vanity but for health, to live and breath for everyday you are granted on this earth. I was so unwell that I couldn’t help Hailey and the boys so I have learned in order to be there for them I have too look after myself too. I would hate to think of a time when they would need me and I wasn’t there. 2015 has taught me to look after my mental and physical health always.x

There is so much more I have learned over the last 12 months but I could write for days to tell you. I guess if you are a Special Needs Parent my resounding message from this Blog Post is that you are doing enough, try not to feel guilty, the gorgeous faces you kiss good night think you are amazing and they are right, you are! You are their guiding light, you will have down days, have them but always remember to get back up fighting as without you, they will be lost so look after yourself as best you can (not easy I know all too well) but do the best you can and know that is more than enough. Give yourself a break, you have amazing happy children, so you are doing something right.xx

Conor appearing on stage at Christmas was a huge moment for him and us as a family in 2015

Conor appearing on stage at Christmas was a huge moment for him and us as a family in 2015

Where ever you are in the world reading this, know that you are not alone.x Sending all the readers of The Little Puddins Blog a warm hug of thanks for all of your amazing support for every post you have read or shared, in doing so you are helping to raise awareness on behalf of my lovely Conor and Jack, and for other children and families living with Special Needs today.xx

I wish you all a healthy and happy 2016.xxx

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