Peekaboo

We’ve been working more and more with the communication app, Speak For Yourself, on the iPad and Evie’s really doing well! It’s so exciting to see what she has to say beyond the signs we’ve been able to learn.

Here she is playing a peekaboo game with her speech therapist, who has been wonderful in helping us!

 

Later in the evening, Evie used the app to tell me “Aleyna, car, hat, outside” more than once. So of course we went outside with her hat and let Aleyna push her in her little car. She also said “Aleyna, bike, love” because she really does LOVE Aleyna’s bike. haha.

We just got all the paperwork submitted to hopefully get Evie her own iPad Mini with the app and an external speakers case and I’m praying we get our hands on it before heading back to Cincinnati, but you just never know with insurance! We could get it next week. We could get it in six months. *sigh*

Oh! And now she’s up to 21 pounds! Five pounds since June! So so exciting!

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Amazing What FOUR Pounds Can Do!

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The first picture isn’t even at Evie’s lowest weight back in June before we discovered her allergies!

She’s finally hit twenty pounds! I’ve been so hesitant to shout it from the rooftops, though, since when I usually celebrate any weight gain, she promptly gets sick and loses it all. Let’s hope that’s not the case this time!

She’s such a cute little chub!

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Healthy Child Privilege

(based off of White Privilege: Unpacking the Invisible Knapsack by Peggy McIntosh and Exploring the Invisible Knapsack of Able-Bodied Privilege by Phyllis M. May-Machunda both of which are good reads)

Just a tiny fraction of Evie's medical equipment and supplies.

Just a tiny fraction of Evie’s medical equipment and supplies.

The whole concept of privilege in this context is that when we belong to a majority group, there are certain “perks” or advantages with being a member.  We don’t even realize most of them because they are part of our normal, everyday life.

From my experience mothering a healthy child before a medically fragile child, I have listed some privileges those with healthy children can regularly count on:

1. I can, if I wish, arrange to be in the company of parents of children with a similar health status as mine most of the time.

2. If I should need to move, I can do so with little regard to the medical facilities available in the area where I’m planning to move.

3. I can be pretty sure that my neighbors in such a location will be neutral or pleasant to my child.

4. I can go shopping  with my child without assistance whenever I choose to do so and also be pretty well assured that my child will not be stared at or mocked, or have strangers ask rude questions about my child.

5. I can turn on the television or read the front page of the paper and see people similar to my child represented.

6. If I bring my child to an emergency room, I can count on the doctors and nurses being able to care for my child.

7. I can take the time to try natural alternatives for my child’s common ailments and know that I am not risking my child’s life by doing so.

8.  I can be assured that my child’s mental capabilities will not be underestimated based on his/her physical situation. I do not have people regularly asking about the cognitive abilities of my child.

9. I can be confident that people will not assume that I did drugs when I was pregnant with my child.

10. I do not have the general public assuming my child is a burden on society or would be better off dead.

11. I can make travel plans without regard to the location of the nearest hospital (or nearest hospital with the appropriate specialties).

12. I can feed my child whatever food I deem acceptable without the input of a specialty nutritionist.

13. I can assume that when tending to my child’s basic needs to eat and breathe, I will not receive looks of disgust or revulsion.

14. I do not need to view the general public as a threat to my child’s health and well-being.

15. I can care for my child’s daily needs without the assistance of a medical professional.

16. When leaving the house, I do not need to worry about leaving behind supplies or equipment that my child will need to stay alive.

17. If I forget something my child needs, I can generally find that item at a store with ease.

18. My child can be given CPR without specialized medical equipment.

19. I do not need to fight insurance in order for my child to have the tools and/or procedures he/she needs to see, hear, communicate, walk, eat, breathe, etc.

20. My child does not need to do GREAT things in order to have value. He/She can be mediocre and still seen as a human being.

21. If an emergency arises, I can gather up the bare essentials in a matter of minutes.

22. I have no issues finding clothing that works with my child’s physical/medical status.

23.  At least one of the parks in my area will have equipment that my child can play on.

24. I can describe my child without using medical lingo.

25. I can easily keep track of my child’s surgeries, procedures, medical test results, and past and present medications.

26. If my child cries, I can rest assured that I (and others) can hear him/her and respond.

27. My child is not the only representative of his/her health status. His/Her behavior and abilities are not the basis from which opinions are formed about all other children who are generally healthy.

So what do I want you to do with this insight? Well, for some of them, like only seeing healthy children as having value, obviously we, as a culture, need to change that perspective. But for most of them, I just want you to understand your own privileges so that you can be gracious to those without those privileges.

Imagine two friends who have significantly different incomes.  If the friend who makes more money is unaware of his privilege, he may do things that hurt the friendship. If he insists upon eating at the most expensive restaurants or exchanging expensive gifts, the friend who makes less money will either need to retreat from the friendship or go into debt! But if the friend with more money recognizes his privilege, he can be more accommodating to his friend, by going to a less expensive restaurant, for example.

I don’t expect anyone to move heaven and earth to accommodate our needs, but by knowing more about our life, perhaps we can all understand each other a bit better.

Special thanks to my friend Sarah who blogs at Our Teddy Bear’s Journey for her help and insight in making this list.