Danielle Anderson 4/7/2017

Children with Differing Abilities

LP# 5 Interview with a parent of a child with differing abilities.

1. When did you know Elise had a special need?

Elises birth was difficult and she would no eat from birth. We were hopeful but after a couple of

days, she was given a GI tube which she still has. She would choke on thinner liquids and by the

time she was one-year-old we were given a proper diagnosis. (Her mother became emotional and

did not want to talk about the proper terms for her condition and I cannot recall what it is from

our previous conversation.)

2. What kind of financial situations have arisen as a result of Elises condition?

Birth costs were much higher than normal. Hospitalizations, monthly doctor visits, and weekly

therapies are extremely expensive. Having to get my daughter to and from Early childhood and

the daycare has been tough as well. Since we are out of the district, I have to take time off of

work to run her up to the school for ECE during the day even though the School bus already

busses to her daycare center. We would have switched her to another program when we moved

out of the district but she has already been involved with this program and made progress. Also,

every time a PCA quits, I have to take time off of work until we find another because she cannot

go to daycare without one.

3. Do you pay for the PCA out of your pocket?

No, we get financial aid to pay for the PCA but I still pay full price for the childcare on top of it.

4. Why did you choose Bear Buddies Child Development Center?

My oldest daughter went there, its close to work, and at first we thought she was a normal baby

when we enrolled her.

5. How often do you have to call into work because Elise is sick and needs to leave

Daycare?

Elise has abnormal bowels so she gets constipated easily. I give her a stool softener and

sometimes it makes her have a blowout. She is sent home every time this happens and I need a

Dr. note stating it is not contagious. She gets fevers easily as well so we are called to daycare to

get her at least once a month most of the time she is ok but she does get strep often so I have to

take her to the Dr. each time.

6. Do you ever feel singled out by the Daycare because Elise has severe special needs?

No, I know that they are only following licensing rules but I wish more exceptions could be

made. I had to get a dr. note so that she didnt have to wash her hands under running water

because she is too old for the baby wipe hand washing and they cant get her to a sink properly

and wash her hands in the water. I understand, but licensing needs to understand as well.

7. I know Elise gets around by walker and wheelchair, how has that complicated things at

daycare?

Financial aid will pay for one wheelchair every 10 years so we had to be very selective. We

cannot afford a second wheel chair so I have to cart it around from daycare to home daily.

Sometimes I only remember to bring or take home the walker or wheelchair. This makes it hard

on the daycare and PCA. It also makes home life hard when we forget to bring them home. Elise

is heavy (about 60 lbs) and cannot walk or crawl on her own.

 8. Why dont you attend Bear Buddies today?

A few months ago, we lost our PCA and she cant attend unless we have one lined up. It has been

hard to line up a new one because it is a temporary position. Elise is 5 now so she will go to

school full time in the fall.

9. Would you like to add anything else?

We have been through extremely trying times after the birth of Elise, we are going broke to pay

for special treatments, and I cry all the time for my daughter and all of the normal things in life

that she is missing out on. If I could make her normal I would. But I love her so much. Her

smile, her personality, the way she brought this family together, the way her sister loves her

dearly and watches over her. Yes, I would change it but, I would do this all over again for her in a

heartbeat. I would choose this life over not having her at all. I have a good support system and so

many services to help Elise and our family every step of the way. The daycare has had to fight

for Elise many times with the licensor and I am grateful to them for all of their help in the last 5

years.

Conclusion

In this interview, Elise has severe mental and physical disabilities caused by a rare gene defect.

Both parents need to carry one part of this gene. She also has autism on top of the gene defect.

She has been at our child care center since she was born 5 years ago. A few months ago, her 2nd

PCA became pregnant and had to step down from caring for her. My understanding, based on

this interview, is that there are many difficult things to consider when you have a child with

special needs like: if you will work, how you will work, who will take care of the children, how

will you get your child to daycare, how will you pay for it, will your child be safe, and what/who
will be your support system. There are many hurdles to jump and resources out there. if you

know where to look. It wont be easy but if you choose a child care that has your and the childs

best interests at heart, you will have allies and advocates on your side. Childcare regulations and

a childs best interests can sometimes conflict. Especially when the child has special needs. In

Elises case, trial & error and exceptions have needed to be made but over the past 5 years, they

have been part of the hardship as well as a safe place and an advocate on her behalf.