6.04.2014

Our beginning...

One of my favourite sayings floating around the internet lately is "don't compare your beginning to some else's middle".   I love that saying because I am so guilty of doing it.  I think we all do, whether it's pretty rooms on a blog, parenting, or even our own bodies.

Lately for me it's been the issue of parenting.  Specifically my own kid's success.  This is the time of year that everyone is shouting out on FB colleges their son/daughter will attend, scholarships they have won, awards they have received, and future plans.

Sara is finishing school this year.  As in done.  No more public education.  Just finished.  It's incredible to me that our system is designed to start when they are babies- three years old, and then go until they are 22 and kick them out into the world with a "don't let the door hit you in the ass" kind of feeling to it.



Not that I think the public education system should continue to educate my child, but beyond school- there is virtually nothing for adults with special needs.  It's still as uncharted territory as it was 40 years ago.  I talk with other parents and they are making their way and creating their own havens for their adult children.   They get creative, but all of them agree that there should be more.

Another struggle we have been dealing with lately is stubbornness.  Otherwise known as "I am 22 and you can't tell me what to do".   Last night was a humdinger of an evening.  Sara fights us about bath vs. shower, so we created a system of one night bath, the next night shower so that she has choice in the  matter.  Yesterday was hot, she was sweaty, and I explained to her that she really needed to take a shower even though it was a "bath night".  She agreed and went upstairs to take her shower.

Only she didn't, she took a bath.  And I pretty much lost it.  I've been dealing with a lot of back talk and rudeness lately from Sara, and this was the proverbial straw for me.  I even spanked her on the bum at one point.  I think that got my point across and she took the shower.  This morning she woke up with diarrhea and vomiting.  Could have been the food we had last night, or the fact that she went to bed upset- which we both did.  This is a hard balance- giving her choice and acknowledging her adult status, and also recognizing that mentally she is about ten years old and I am still very much the parent in her world.  I am her legal guardian and as such it is my JOB to ensure that she is taken care of, but lately it has been challenging.

I know I've talked before about keeping it real here on the blog- about sharing more of the real stuff that goes on.  I struggle with that simply because by putting it out there SOMEBODY will judge me, my actions, or my feelings.  Mind you, that person will never really know what I deal with on a day to day basis with Sara, or the fears I have as I get older while my "child" remains ten years old on the inside.   That one day I will not be able to physically take care of her, or deal with a 125 pound person having a tantrum.   That scares the crap out of me, and I am not one to easily scare.

The beginning is not looking good today, but I know that it will look better on other days.  Still, it's hard to ignore the shout outs about colleges, wedding engagements, and bright futures of other's kids.  To not compare it to Sara's beginning.  Wondering what the future will look like, how she will thrive, and how we will keep the balance of parent and adult child.

Wondering what our middle will look like.

35 comments:

  1. {{{hugs}}} congratulations on her graduation!!!! that's awesome. my mom worked at a place for people with mental and physical challenges where they learned certain jobs. some would work out in public like at a restaurant, others worked in their "plant" where they sorted things for an company that made airplanes like nuts and bolts and parts. this was in Georgia but maybe there is a place like that here where she can continue to spread her wings.

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  2. I know you read my blog from time to time. I haven't written in about a week because I was working on jobs outside of our rehabs or the old Victorian to come up with the money to travel to Michigan to watch my youngest biological son graduate high school. I didn't get to see my Bubba because of situations beyond my control and the fact that he would never understand that he couldn't go Bye-byes (which is supposed to always be the case when he see's his Momma). As I watched his younger brother graduate and know he is going to college and his older brother has a job and two children I cried not only for my son graduating but also for my Bubba. In Michigan they get to go to school until they are 25, Bubba is already 22. I found out that there is no laws to help me with visitation of him because he is legally an adult even though his mental age is about 2-3. I understand completely about the temper tantrums he is 5ft.11in. and 250+lbs. that is a big 2 year old tantrum. I have to be careful when he comes for visits because of the girls being so much younger and smaller (though he would NEVER intentionally hurt them if they would be in the way during one of his tantrums it could be catastrophic). I would never judge anyone on how they have to manage their special needs child. I know first hand all the heartache that you can go through. I have cried myself to sleep from missing him but also have done so while he is right here when he has had a bad day and me feeling utterly helpless.

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    1. I feel your pain on that one. Sara has had a hard time watching her siblings pass her up. No one explains that to you or even talks about it much.

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  3. also meant to say before I hit publish...that her future may be different but its just as bright. we have a nephew who is severely autistic and we talk about this a lot with my kids. when they were younger they would say "what's wrong with him?" I would always start off by saying "there's nothing "wrong" with him. he is the way God made him, perfect in every way. he's just different and different is good." they know and understand that he has a different way of doing things and that he needs extra love and attention. i'm rambling here so i'll stop and just say say that I just appreciate your post today so much.

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    1. It really is a learning curve for the both of us. Navigating our path and seeing it as "ours"- knowing I won't find answers in a book about DS- all of that is a process. I know you get it!

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  4. I can certainly relate. In some ways it can be harder because my son doesn't look like he has disabilities or challenges. It's not obvious until you are around him more. He does live on his own with lots of interaction. He is learning life lessons. People don't understand why he doesn't work. We went through all the training and he was never placed with a job. I know there are things he could do if he was given the chance.
    I could not live with him. Although I don't think he would hurt me we would be constantly on each other. So hard. . So sorry that things are rough. Would you consider a group home. Hugs

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  5. Tricia...You are an Amazing mom! I've seen you in action - I know! You approach everything you do with "all that you have to offer"! You bring your A game everyday to everything you do! Sara is so fortunate to have you as her mom. It is going to take someone just like you with that super powerful light to be the beacon that lights the path for those that can't see but the steps that lie before them. You are the voice that community, science, and government needs to hear. I pray that people in our communities will join this cause and help shine a broader light to help our special needs population have more options for a more fulfilling life.

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  6. Tricia, thank you for this post. My daughter is 13 with DS and I go through the same issues about bath time. She simply hates it, I know my neighbor must think we are crazy during bath time. My Gracie is 13 and I experience the same issues with her independence. Please know that I only know you from IG and I look up to you as a mentor. I read your blog and know that this is our normal. God has selected us as parents for his special children and I know we won't fail him. Your feelings about the shout outs on FB are shared by a lot of us. I sit here and say Yay, my daughter wrote her name without prompting!!! Keep doing what you are doing because it helps soo many of us. May God continue to bless you and your family with the wisdom and right choices for your beautiful daughter.
    Fondly

    Sylvia from a Lil Piece of My Yarn

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    1. Yes, our normal looks so different to those on the outside. The bath thing is a hygiene issue- and so personal that it is hard for me to share. People want to see us as "special parents" when in fact we are just normal humans who have their limits. I get tired of people putting me in the angel category when the truth is that I am far from it! I know you understand and thank you for your sweet words!

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  7. I worked for years as a transition specialist, and the aging out of my students was one of the hardest parts of the job. There is no where promising for most of them to go. I've watched the skills they learned and the knowledge they gained waste away while sitting at home waiting for a "job" placement. I feel for you and for Sara, do not let anyone's judgements get in the way of you knowing you are doing the best you can for your child, whom you know better than anyone else. I have long dreamed of being able to start a business where adults with disabilities can work and thrive...I'm not sure what I'm waiting for.

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  8. You are a good egg. One I admire greatly. XO

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  9. I'm on the Board of Directors for our local DAC. We work with people from the time they graduate high school through old age. We have daily classes including life skills, grocery shopping, cooking, etc. We have some clients who clean office buildings. We have two teams of clients who work at the local casino/hotel as room cleaners. We have contracts with several manufacturing plants to assemble some of their products. Our clients are able to earn money (if they want to, they don't have to work), learn valuable skills, and make lifelong friends. Perhaps you can find something like that where you live. Your daughter is a beautiful young lady. You have done a great job!

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    1. Texas offers very little. We are about 40 years behind the rest of our nation when it comes to special needs services. It's sad really- we could learn so much from the Northern states!

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  10. Congratulations Sara!

    As you say, I have no idea what it is like for you but my thoughts when I was reading your post were...she will be fine and ... pick your battles ... shower vs bath ...not really a battle I would choose but I'm not there. with love.

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    1. It really does matter because of hygiene/toileting issues. I didn't want to get into that in my post- but it really does matter.

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  11. Gosh I completely understand the worry! First of all, my hat is off to you and the day to day struggles that you go through with a child that has down syndrome. That can not be easy. I have a child with a form of autism. Luckily it is mild and his prognosis is good for a normal future, but I still worry. He is inmature for his age and doesn't do a lot of things that other kids his own age do. He is a bit of a loner which makes me worry about him socially. So, I worry about his upcoming teenage years. He just turned 13. I wonder if he'll drive, or when. I wonder what kind of job he'll have. I wonder if he'll ever live on his own. So, yes, the not knowing is difficult for sure! One thing that I have been told over and over though, is not to compare him to others that are "normal" if you want to call them that but rather to his own progress. Is he making progress now compared to last year? Then that's an achievement! Each year he is making more progress and doing better in school. So, I'm feeling optimistic. It's just the teenage years are making me nervous. That's a difficult time in any parents lifetime. Then if you add special needs on to it, then does that mean double the trouble? I smile every time I see Sara. She seems like a very happy girl and is lucky to have such a loving and caring family to be a part of.

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    1. I honestly found that the things I worried about when she was younger, were actually non-issues when it came to pass. It was things that I never thought of that ended up being the big ticket items!!

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  12. The day my son graduated, just weeks before his 22 birthday, I had dreams of him attempting to get a job or find some sort of 'happy' day program...not so much! He will be 29 in a few days, no job, no day program. We had numerous activities for him while my husband was still alive but since he passed, it falls on me and I work full time! He too thinks he needs to be treated as an 'equal' in the home, yet his developmental/social skills are around a young teenager with some impulsive and self mutilating tendencies. I totally understand what you have written here. My heart goes out to you and I will lift you up as you face this new beginning for your Sara! I am believing with and for you that you will be able to find and/or create a safe and productive situation for Sara that will help her feel some sense of independence as well as continue to challenge her to grow. You're in my thoughts!

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    1. You totally get it, and I really think that unless you are parenting a child with special needs you just can't get it. Thank you :)

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  13. I read your blog quite a lot and love your style. I also love your devotion to your daughter. I don't know if you are aware of the website ThinkCollege. If not, I suggest you take a look. There are college programs out there for individuals with disabilities. Not many, but they do exist. There will be more in the years to come.

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    1. I will check that out- thank you so much!!

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  14. I'm just wondering if all the recent changes with the house selling, living with your parents, and renovating the new place are affecting Sara and making her act out to have a sense of control. You had just made her a little sitting room in the old house - maybe she's more upset about letting that go than she verbalizes to you. Just a thought :) Blessings to you as you chart the next steps for Sara~

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    1. Could be, but Sara also has grown up with constant change- she is rather used to it! I do think that the acting out is a way of her asserting her control. We are doing much better this week- as I knew we would ;)

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  15. What a refreshingly honest post. I think it's wonderful that you are able to blog about your fears and frustrations. You are an amazing parent! This is a difficult time, I know. Hang in there, Mom!

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    1. Thank you so much! Sometimes you just need to vent and have someone nod their head in agreement :)

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  16. Thank you for this post Tricia. As I joyfully did a post about my daughter who just graduated college I actually wondered if my joy could cause another pain. I'm sorry for this crossroads you've come to and the feelings of "What next?" you must be dealing with. You are a good mom and a woman of great strength. Whether you know it or not you are making a difference in this world by educating people about special needs kids. Keep letting your voice be heard. You are an encouragement to others.
    Blessings to you,
    Patti

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    1. No- not at all! I would never want someone to feel guilty for celebrating accomplishments! I am truly happy for my friend's kids and their successes. There are times it's hard to see all at once, but I want people to shout their happy from the rooftops!!

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  17. Sounds like you had a trying day. My 30 year old son with Down Syndrome lives in a group home. His Dad's choice - not mine. Some of the caregiver's just have trouble getting Patrick to take a bath! One of the downsides of the group home. So many personalities and Patrick is really stubborn.....I'm not sure I understand the issue with bath vs. showers. Does it really matter?

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    1. It really does matter, for reasons I don't want to put out there on a blog. It's a hygiene issue because of toileting.

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  18. I totally understand what you are dealing with. My son with Down Syndrome is 16, and he wants to start dating and driving like his sister did at 16. Its hard to explain to him why he can't drive now. He misses out on some things other teenagers are doing, but on the other hand, they miss out on some of the things he is doing, such as loving others unconditionally, and finding joy in the little things. I wouldn't change him for the world. I know that even through your challenges, you wouldn't really change your daughter either.

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    1. Exactly- that little something extra is what makes Sara who she is. At the end of the day I wouldn't trade that for the world. There are things that make it tough though, and everyone has their breaking point. Tomorrow is a new day :)

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  19. I won't even pretend to understand the challenges you face every day but I can only image your of the time when you can no longer care for Sara. My heart goes out to you but know that I admire you and any one who cares for their children with special needs. I'm sharing your blog and especially this post with a friend from work who has a son with special needs. Thanks for sharing your life. You have a big heart. Hugs

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Thanks so much for popping in. I appreciate all of your lovely comments...Tricia