Friday, January 08, 2016

Special Needs Spotlight || Harper


Thank you so much for the opportunity to be part of your very special blog. I love your Special Needs Spotlight section, I really feel these beautiful kids need their stories told so people realise they're just like every other beautiful little kid. Putting a personality behind the person is so important. I'm Sarahjane, privileged mother to Harper (4 years) and Chloe (4 months) and wife to an amazing man, Andrew.


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Miggy: Hi Sarahjane, thank you so much for being here today and sharing your sweet family with us. You have a son who is 4 and who is missing a portion of his18th chromosome and who is Autistic as well. When did you first know something was 'off' about your little guy? What were some of the signs and symptoms? How long did it take you to get an official diagnosis? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Sarahjane: As soon as Harper was born he was rushed away from us and popped into the NICU.He was actually born a sick little bubba, but after some treatment with antibiotics, the issue soon resolved itself and no one ever found out what it was or where it originated.

It was during this time in the Special Care Nursery the doctors identified a number of 'abnormalities', which included a fused kidney, mild club foot and an issue with his little boy parts, so they decided to run a genetic test. The test showed that a portion of his 18th chromosome was missing and thank goodness this was found when it was. We were so lucky to receive a diagnosis at six weeks of age which meant we could start Early Intervention at a very young age. I remember we were going through a McDonald's drive thru with tiny baby Harper next to me in his capsule when the doctor rung to tell me the news. Suffice to say I never could finish that McDonald's meal and I don't think I've even been through that particular drive thru again!

I'll admit the first few years were tough, getting our head around what his diagnosis might mean for him, attending endless specialist appointments and dealing with a very uncomfortable, and often unwell, little boy, with terrible reflux and other issues. After his last surgery, a huge weight was lifted off our shoulders and I really feel for those families knowing their little people still have surgery in their futures. Our little guy has been working hard ever since he was three months old with Physio, Occupational and Speech Therapy. With thanks to this hard work by Harper and his team, he has grown very well and is now stronger, making life much easier.


Miggy: Will you please educate us on what it means to have a portion of your 18th chromosome missing as well as having Autism? How does your son’s needs affect your day-to-day life?

Sarahjane: Now that I've had a second child, I realise how hard everything was for Harper as a baby, such as feeding. Nothing has come very intuitively for him, we've had to teach him pretty much all of his developmental milestones (with the enormous help of his therapists obviously). How to sit, roll, swallow etc. But the awesome thing is, he's teachable and once he's got it, he's got it. We're very, very lucky. He's actually a very clever little boy. He amazes us every day by doing things and showing us what's going on inside his little head. Harper has low muscle tone but it
wouldn't be recognisable to the untrained eye. He took longer to reach all of his milestones but he got there in the end so we're very lucky!
We're still waiting to hear Harper's first word. He tries to talk to us but to get the message from your brain and out your mouth is a lot harder than you think! Harper's processing has been likened to perhaps someone who has to translate what they hear into a different language three times, think how long it would take you to understand what the message is!
His biggest challenge (other than communication) would be his emotional regulation. I guess because he can't speak and get his message across easily, this can make a person quite anxious. Thankfully, Harper has the most beautiful temperament, he's such a gentle boy, he virtually never loses his temper and it always amazes me how many people fall in love with him without even him saying a word. He has such a beautiful nature (and long gorgeous eyelashes!).

Miggy: What are the biggest worries you face for your son? On the flip side, what are your hopes and dreams for him?    

Sarahjane: You know, I think a lot of parents worry about their kids being separated out from their peers but that doesn't worry me so much. I was raised as a Jehovah's Witness so I think being segregated out and raised as 'different' was really quite normal for me. I've learnt that it's who you surround yourself with that's important - your friends - they're the ones that will make you feel normal no matter how normal you may or may not be!

I think Harper has always been so challenged with communicating, which is one of my biggest fears for him. Not being able to talk is one thing, but not being able to gesture, point or generally get your point across is really another. Because he's been home with me so much we basically know what he wants when he takes our hand and leads us somewhere. I worry when he goes off to kinder, then school and I have less time with him meaning I won't be there to know what he wants and needs. Also, the challenges he has with his confidence keeps me up at night. I want him to feel more confident in his abilities. I totally appreciate this poor kid has had professionals and therapists teaching him the right way to do things since he was a tiny baby, that's got to do something to your confidence. It's something I'm really aware of and want to help Harper with. I worry people will give up on him and put him in the “too hard” basket. I smile at my daughter and she smiles back at me immediately, it's just not that easy for Harper but I've learnt that doesn't mean he's not smiling inside. You've got to keep smiling at him, just because he doesn't wear his emotions on his face all the time it doesn't mean he's not feeling.

Miggy: I have long stopped trying to figure out if it was worse having a visible disability or having an invisible disability--both have their pro's and both have their con's. Coming from the perspective of a parent who has a child with an invisible disability, is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Sarahjane: I think we often let our son do things that might appear to be naughty to other children. Harper doesn't engage in toys or things like most children would, so if he makes up his own game or engages in something or even eats something different we really encourage him. Often to the untrained eye they presume he's just a spoilt little boy but we really encourage Harper as much as we can with everything. Harper finds it really hard to keep still, sitting or even standing still so he's often running around. Again, to the untrained eye that can be perceived as naughty or as a child out of control, however this constant movement helps keep Harper calm. If we stopped him from moving believe me, then you might see a different side of him.

Harper has really taught me that everyone is on their own personal parenting journey, special needs/additional challenges or not. Every child is individual and parenting is the hardest job you'll ever have. We can't be judgemental of each other.

Miggy: If you could say something to the mom who just starting on this journey of special needs, particularly autism and a chromosome disorder, what would you say? What would you say to yourself if you could go back in time?    

Sarahjane: Lots of people said it to me but you'll love this little person more than you'll ever imagine. I think appreciating how much they work and struggle to do things we all take for granted makes you love them even more. They will never be a burden to you, you'll do whatever it takes and you will always be enough, no matter how bad the day. And your bad days will be forgotten because your good days are so good, they make up for everything else.

I would say: Be kind to yourself. There's a lot of soul searching that goes on with having a child that's different. Accept help when it's offered. Your journey will be harder than the average parent with a 'typical' child. You will have lots of appointments, lots of appointments, you will never be bored! You'll have lots of additional work to do with your child, such as homework from their therapists. Try to see it less as work and make it as fun as possible. I really think parents on this journey need emotional support similar to people with Post Traumatic Stress Disorder, you're always on alert, you're always in survival mode. Surround yourself with people who understand your journey. Although to be honest those friends who might not understand your journey because they're not travelling the same path will also be just as precious to you,  you will need an outlet and a distraction.  Don't lose your old friends,
you'll lean on them just as much.

From day one of our diagnosis we've had lots of additional people involved in Harper's life and to be honest, some of our therapists have enriched our life beyond belief. It's worth searching for good therapists believe you me, they have so much to do with your day to day life.

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Sarahjane: Not to judge anyone.

I used to form opinions of people at a glance and I always secretly thought it must be the parents fault the kid was the way they were. You know, I was so wrong. I've met so many special families because of Harper and I can assure you the parents are very, very “normal.”
I'll be honest, I never anticipated what an incredible father my husband would be, he's so crucial in raising our two children and keeping me sane! We really work as a team and I couldn't do it without him. He is Harper's best friend and watching them play and engage makes my heart burst.

The other thing I could say is it's worth it, all the hard work is worth it. Harper is hard to engage with but when he gives you a look or even a smile it's worth it. Some days you've got to make an extra special effort to try and get inside his world, but if you can get there, it's amazing! Better than any place you'll ever go.

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That last question always seems to get some of my favorite quotes of the interview, and this one was no different. "Not to judge anyone." Coupled with "...it's worth it, all the hard work is worth it." really hits the nail on the head for me. People, especially our people are worth any and all hard work we might be called to do. And like Sarahjane said, I promise they won't feel like a burden. I love that. Sahahjane thank you so much for sharing your sweet boy... to think of how much he has had to learn and learned successfully! shows what an amazing, determined spirit he has. I so appreciate you sharing your story and sweet family...please go give your kiddos a huge squeeze from me. They are adorable! 

Phew! It feels good to have a spotlight again! Sorry for all the radio silence over here guys, sometimes its helpful to step away from the ol' blog for a while. I'm working hard to get more spotlights (and other stuff) to you soon. Thanks as always for your support! And please if you know anyone who would like to participate in the Special Needs Spotlight series please email me at thislittlemiggy at gmail dot com. And if you've emailed and haven't heard back hold on! I'm a coming! 

Have a great weekend. 
XO
Migs

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