A little about life as a special needs parent

I don’t think there is anything that can accurately describe how it is when you have a child that has special needs or as I like to call it above average needs.  So many people will try to impose their thinking on you, or offer up unsolicited advice because they know someone that has a kid that also has special needs or they read something somewhere.  It comes from all angles and although these people swear they are just trying to help – it really doesn’t help.

No two people are the same and that is never more true when it comes to kids with special needs.  What is going to work for one probably isn’t going to be exactly what another needs.  It’s more about trial and error until you get what works for you and your situation and kiddo(s) going in a good direction.  Another thing is that direction isn’t going to stay steady and constant, it can change in an instant or it can be gradual, but the thing is IT will change so you have to be prepared for that.

When trying to get a kid diagnosed or at least figure out what is going on and find the reason why, it is challenging, it is tiring, it’s difficult and at times it can make you second guess yourself.  I have found that giving up is not an option, never be afraid to seek out the answers they can make all the difference to you and your child.

For me it has been a long process, so much slipped through the cracks because those that worked with my oldest day in and day out never thought to maybe mention some of his other issues to me until he was 9 and we were moving away.  It had been staring at me in the face for years, “cannot sit still” “has a hard time paying attention” “has a hard time starting work and getting it done” “has a hard time concentrating on his work and is easily distracted”…finally we moved to a new Province and the teachers here said you need to get him checked for ADHD he is off the rails.  Sure enough between the school and his Dr. we got that diagnosis.  It was about a year later when his behaviors were not getting better only worse that we went back to the Dr. and after research and talking to the Dr. he diagnosed him with ODD (Oppositional Defiance Disorder) and all this on top of his Diabetes.  We have been through therapy, as a family and just Cameron, we have tried medications you name it but nothing is helping much.  I miss my little boy that was happy and not so angry and aggressive, the one that didn’t lie so much or steal things from us, the kid that laughed and had fun.  It just got worse and worse as time has gone on and I struggle to keep things on a good path at times with him…but I keep trying and letting him know I am going to keep going until we get this sorted out.

When it comes to Kiana I knew what I was potentially getting into when I found out I was expecting.  Knowing her Dad has PDD-NOS and there is a strong suspicion his Dad is on the Spectrum somewhere as well as his Brother (officially dx) I knew that the odds were pretty good and sure enough I was right.  I figured it out at about 4 days old that she was going to be just like her Dad.  I strapped her into her Carseat and got ready to go home after she was born and she just lost it.  She was screaming the whole way out of the hospital and home.  She hardly stopped crying for 6 months.  She hated the daytime it was loud and bright and way too much going on.  She didn’t like to be swaddled or cuddled or held a lot.  She wanted to be up on my shoulder or facing outwards – and had to be changed, fed, burped and sat in her chair or walk around with her again for an hour or so – in that order every 3 to 4hrs.  It seemed like she would never outgrow it but she did thankfully.  It took us a long long time to get her in a better sleeping pattern but I am happy to report that since she started Pre-K she has been sleeping better.  We have a set routine, Pj’s, teeth brushed, movie and bed.  She has been doing so amazing – learning, growing and just blossoming into such an amazing little girl.  I am pretty lucky to have such an awesome kiddo.

The hardest kiddo to deal with in terms of sheer time and energy it takes to deal with her and all her stuff.  She is 20 months but she has Type 1 Diabetes and ADHD with intermittent seizures and possibly Autism like her sister.  Her food has to be measured as accurately as possible – a simple thing like Gold Fish crackers – in order for her to have them I have to get a plastic bowl, weigh the bowl on the food scale, then zero it out, then add gold fish crackers until it hits the right amount of weight to equal the amount of carbs that it says that weight of crackers is on the box.  So 20 grams of gold fish are supposed to be 33 gold fish crackers which is 12 grams of carbs.  But the fun thing is – that isn’t always the case – so I cannot rely on the 33 gold fish are this many carbs – anything under can cause her to end up with a low blood sugar when I bolus for them or anything over can cause her blood sugar to be to high and that isn’t good either.

Before she eats anything or has anything with sugar/carbs she has to have her blood sugar tested which means a finger poke and then to measure her carbs.  Bread carbs and pasta break down slowly so it can drag out for hours that her sugars are all over the place and that means more finger pokes and if we are not careful keytones etc.

It’s not always easy to deal with all these things, no one can prepare you for the craziness of being a parent but in this case no one could have ever prepared me enough to take on all that I do.  But they are my kiddos and I will always be there and always fight for what is fair.  But it isn’t always easy…but then again that is life.

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