Kylee Ostermann's Blog:
Children with Disability NZ Our mission is to make New Zealand the most disabled child friendly region in the world!
Kylee Ostermann's Blog
- I Am Kylee Ostermann!
This Is Kylee's Story:
Kylee...
As a parent of a disabled child, you are thrown into a whole other world. There's a lot to learn, so you can navigate this new world as best you can. You learn about your child's condition, their needs, their issues, their equipment, and their accessories. While also learning about their personality and what their likes and dislikes are. You meet lots of professionals involved with their care and you can face many hospital appointments and stays. Sometimes it can be a struggle to even get a formal diagnosis for those with less visible disabilities such as dyslexia or autism. Whatever the child's diagnosis is, they still have common needs and wants as other neurotypical/able-bodied children.
However, there are usually more challenges in society for children with additional needs. Whether it's accessibility, acceptance, support, or inclusion. One of the first steps people can do when they see or meet someone with a disability is to simply say "hello". A friendly, welcoming approach is so appreciated, rather than avoiding or staring at them.
& Her Son Alex...
These people have feelings too. They want to feel connected and accepted, so addressing this person directly first, rather than assuming they need their career to answer for them. Treat them as you would any other person, "hello, how are you?" If their career responds with "Hi, this is Alex, he's good thanks". Then you can follow their lead and then understand that Alex may not be able to speak for himself. Sometimes children are unsure how to approach somebody that seems different. Modeling a positive example and behavior towards others will encourage children to follow your approach. There's a common phrase that is sometimes spoken of but often forgotten: Be Kind. It's actually just that simple.
Be Kind Aotearoa!
5/11/2022 Lock Down
Surviving The Lockdown:
Kylee Osterman...
They say it takes a village to raise a child. Things clearly changed for us when lockdown was implemented. These past few months have been hard on so many people. Everyone has differing circumstances and methods of coping. Some have added challenges if a member of their family has a disability. It meant that our support system had shrunk. School is closed, and there are no longer any daily routines or structure that a school day provides. Our teacher aides are a huge help, filling in for therapists in a variety of ways. Physio exercises are done, sensory and communication exercises take place, equipment and play tools are used. Classroom participation and socialisation are also a huge part of my son's time at school.
Having some uninterrupted time at home can be nice, but after a few weeks it can grow tedious away from all these support networks. Boredom and weariness sets in after a while. It's difficult to come up with helpful and relevant activities when your child can't be kept busy with things that most children can, such as games, crafts and outdoor playing. Isolating from friends and family can be tough on everyone, but more so on those who rely on them for shared care of a disabled child.
- Kylee & Her Family.
- Kylee's Son, Alex!
The Journey Began...
Unfortunately, we needed a new hearing aid just as lockdown began, so our appointment was pushed back. Because it took approximately two months for us to complete this, my son was left with impaired hearing for the duration of that time. The mental load of the uncertainty of Covid 19 is probably the biggest stress. Keeping my family safe is my priority. Because my son is unable to wear a mask and he is not yet old enough for the vaccination, it was an easy decision to get myself vaccinated. I cannot afford to become so ill that I may need hospitalisation or even worse to succumb from Covid. I have a responsibility as my son’s main carer, as well as his mother.
My son’s immune system is compromised from several bouts of pneumonia in the past, after which also possibly led to seizures where he stopped breathing. The origin of his seizures is still undetermined and can only be assumed that they occurred after he was unwell. I can only do my best to reduce possible exposures and take close notice of any physical symptoms to keep him well. It only takes a small effort to continue hand sanitizing and scanning those QR codes in public places, wear a mask whenever possible and keep your distance. Especially when around someone in a wheelchair. That person may not be able to redirect from the path they are travelling on in order to use their wheelchair. So please, be kind, be courteous and we can all get through this together.