Living with Autism
I thought I would let others know what our day-to-day life is like. I'm not complaining or whining about my life. While my life is not what I thought it would be when I dreamed about being a mom, I love my EK to pieces. I love everything about her, but read/research all the time to try and find ways to make her life better. I want her to be healthy, to be able to communicate, to feel loved, etc. If there something that's in my ability to help her, I'll do it. I know my husband feels the same way!
Mornings:
I get up around 6:30 to make my coffee and get EK's breakfast ready. Keith goes upstairs to get EK from her room and brings her downstairs. She can walk on the stairs if you hold her hand. She usually has gluten/dairy/egg free pancakes or waffles. She will use a fork if I put food on the fork. Since I don't give her syrup, she can use her hands to eat. After breakfast, we sit her on the potty. This is the only time she is consistent. Then it's time to get her dressed and do her hair. EK requires everything to be done for her. The bus picks her up outside our door around 7:15am. She comes home around 3pm.
School:
EK is in a special class for kids with autism. There are 3 teachers (1 main and 2 aides) and 5 kids in EK's class. She has her own goals that they are working on. This year has been alright. EK had all new teachers this year.We knew that her main teacher wouldn't be back this year. During the summer, I found out that one of the aides who had been with EK since she was 3, was moving out of state. Lots of change, but overall I think EK has done well. While most parents push for inclusion with typical kids, we don't. Our biggest priority at school is for EK to be safe and happy. She gets inclusion at home with her siblings and at church. :)
Afternoons/Evenings:
We stopped doing any outside therapies last year, as her day was so long at school and AK had just been born. We are looking into starting some outside therapy in the near future. I think OT would benefit her and we're also going to try horse therapy.
When EK gets home from school, she has a snack. It's something I pick out since she's not really picky. She loves to watch her siblings play. Sometimes she sits near them and laughs at them. The times that make my heart smile are when AC or AK interact with EK. She will never initiate play, but LOVES when they do! As it warms up, I'm sure we'll spend more time in our backyard. She loves to be outside.
**Playing in the front yard can't be done. EK has no concept of staying on the grass or driveway. She would wander off (and not be able to tell anyone anything) if I didn't hold on to her. I feel bad that AC doesn't get to play with neighborhood kids, but I won't let her go out by herself and I just can't manage the other two out front. Maybe when AK is more obedient.**
We usually don't do anything in the evenings, except church on Wednesday night. I start getting her ready for bed around 7:45 and in bed at 8pm. She is so good about staying in her room. That may change this summer when it doesn't get dark until 9, but she's usually quiet by 8:30 and sleeps all night. Thankful for that!!
Weekends are more laid-back and restful. AC isn't involved in sports yet. We try to not plan much on Saturdays. Keith is usually off on Fridays(since he works Sunday) and Saturday. Most of the time, I can run errands by myself while he stays home with the kids. Every once in a while, I am brave and run an errand or two with the kids. Even a place like the grocery store though is hard with EK. I have her hold on to the grocery cart, but she can let go at anytime she wants and she's quick. Or if we go to a place like the dry cleaners, I can't hold her, hold the dry cleaning items and open the door. (The main reason I try to find one with a drive-through). It's hard to have company b/c it's upsetting to EK. I hate that we aren't able to open our home very often, but I also want EK to feel like home is her "safe place".
Each child with autism is unique so things that are challenges or even routine for us, aren't the case for other families. Some kids are high functioning and verbal. Some are non-verbal, but still independent in some areas. I just wanted this post to shed a small light on our family.
Mornings:
I get up around 6:30 to make my coffee and get EK's breakfast ready. Keith goes upstairs to get EK from her room and brings her downstairs. She can walk on the stairs if you hold her hand. She usually has gluten/dairy/egg free pancakes or waffles. She will use a fork if I put food on the fork. Since I don't give her syrup, she can use her hands to eat. After breakfast, we sit her on the potty. This is the only time she is consistent. Then it's time to get her dressed and do her hair. EK requires everything to be done for her. The bus picks her up outside our door around 7:15am. She comes home around 3pm.
School:
EK is in a special class for kids with autism. There are 3 teachers (1 main and 2 aides) and 5 kids in EK's class. She has her own goals that they are working on. This year has been alright. EK had all new teachers this year.We knew that her main teacher wouldn't be back this year. During the summer, I found out that one of the aides who had been with EK since she was 3, was moving out of state. Lots of change, but overall I think EK has done well. While most parents push for inclusion with typical kids, we don't. Our biggest priority at school is for EK to be safe and happy. She gets inclusion at home with her siblings and at church. :)
Afternoons/Evenings:
We stopped doing any outside therapies last year, as her day was so long at school and AK had just been born. We are looking into starting some outside therapy in the near future. I think OT would benefit her and we're also going to try horse therapy.
When EK gets home from school, she has a snack. It's something I pick out since she's not really picky. She loves to watch her siblings play. Sometimes she sits near them and laughs at them. The times that make my heart smile are when AC or AK interact with EK. She will never initiate play, but LOVES when they do! As it warms up, I'm sure we'll spend more time in our backyard. She loves to be outside.
**Playing in the front yard can't be done. EK has no concept of staying on the grass or driveway. She would wander off (and not be able to tell anyone anything) if I didn't hold on to her. I feel bad that AC doesn't get to play with neighborhood kids, but I won't let her go out by herself and I just can't manage the other two out front. Maybe when AK is more obedient.**
We usually don't do anything in the evenings, except church on Wednesday night. I start getting her ready for bed around 7:45 and in bed at 8pm. She is so good about staying in her room. That may change this summer when it doesn't get dark until 9, but she's usually quiet by 8:30 and sleeps all night. Thankful for that!!
Weekends are more laid-back and restful. AC isn't involved in sports yet. We try to not plan much on Saturdays. Keith is usually off on Fridays(since he works Sunday) and Saturday. Most of the time, I can run errands by myself while he stays home with the kids. Every once in a while, I am brave and run an errand or two with the kids. Even a place like the grocery store though is hard with EK. I have her hold on to the grocery cart, but she can let go at anytime she wants and she's quick. Or if we go to a place like the dry cleaners, I can't hold her, hold the dry cleaning items and open the door. (The main reason I try to find one with a drive-through). It's hard to have company b/c it's upsetting to EK. I hate that we aren't able to open our home very often, but I also want EK to feel like home is her "safe place".
Each child with autism is unique so things that are challenges or even routine for us, aren't the case for other families. Some kids are high functioning and verbal. Some are non-verbal, but still independent in some areas. I just wanted this post to shed a small light on our family.
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