Walking a Tightrope


I really do try and keep things upbeat and positive here and other than a few weak moments, I think I do a fairly good job of that.  I'm giving you fair warning that today is NOT one of those days.  So please don't beat me over the head as I'm already feeling pretty beaten down. :-)  And I absolutely trust God and know He is in control of all this.  That, however, does not negate my feelings at times.

I feel like I'm on a tightrope all the time.  One false move and I will plummet to the floor below.  It's called the tightrope of being a mother of a child with disabilities.


I'm frustrated for my son.  Nathan turned 21 at the beginning of May and has been finished with school since June 23rd.  I'm frustrated because he has a disability, in fact multiple disabilities, but doesn't fit anywhere in the "system".

We have an agency working with us who is supposed to help him find a job.  So far they have come up with a hundred different types of jobs he could do based on his interests, helped him write a resume, and helped him practice an interview.  But every time we meet they send him on his way with a couple of job leads and tell him to call them back after he applies for the job.  Yesterday, they basically told him, "Your 21 and no one is going to hold your hand."  "You need to search for jobs yourself."

There was no talking to me about any of this.  In fact, he showed up in the waiting room and told me he was finished with his appointment and then on the way home told me all this information.  I don't know how much was misconstrued or actually said.  I am going to follow up with a phone call but I need to wait until I can formulate my thoughts better.

They are right.  He is 21.  He is an adult. But he is an adult who reads at a 5th grade level and writes at even a lower level.  He has difficulty navigating on the computer and calling and pursuing job leads is also not in his range of comfort.  I don't stand over him.  I let him do much on his own.  I do want him to be independent, but the reality is he needs help with certain tasks.   Not everything.  In lots of ways, he's very independent.  But certain things.

One of the jobs they gave him to pursue was in a town across the river, almost an hour away.  Do they understand we have two cars and next to no money?  Do they think about the logistics of getting him to work each day if he does get the job?

Then I'm also on a tightrope with how I respond to Nathan.  I feel horrible even saying this but things would almost be easier if he were lower functioning.  He certainly would get more and better services.  He would not know that he is different.  He wouldn't long for all the things that he feels he'll never get.

His entire body language changes when we walk into this agency.  He gets sullen and angry and tightens up.  Yesterday, as we waited for his appointment a group of developmentally disabled young adults walked by.  Most looked about Nathan's age.  I looked over at him and his face was hard and angry.  I knew what was going through his mind.  He doesn't want to be perceived that way.  Each time we go there, it's another reminder and fear that others will see him as "disabled."

Last night, the anger and hardness cracked and softened for a while as he poured out his heart to his Dad & I.  He doesn't want to be different.  He doesn't want a disability.  There is a young man on the fire department who is mentally disabled.  Nathan constantly lives in fear that others will look at him and compare the two of them.  Which is exactly why he doesn't want to be around others with disabilities, as cruel as that sounds.

Of course, I talk to him about how God has a plan for him.  I encourage him to stop wasting energy on wishing he didn't have a disability but spend his energy on achieving his goals "despite" the struggles.  But it doesn't change his daily dealing with it and the hurt and disappointment he feels.

I have questions for the agency we are working with but I always have to watch my words around Nathan.  He is fragile about this area of his life.  One wrong word or statement pushes his already very shaky view of himself over the edge.

There are times I could really use a giant-sized bear hug and someone just to say, "I love you."  "I'm praying for you."  Often I get stares and no response when I do share.  I understand why.  It is hard to know what to say when you aren't dealing with it on a day to day basis.  I know that.  But I still could use a hug! :-)

Some days I feel like I'm teetering badly.  Other days things are better.   I generally catch my balance and push on but I do have to say that it's tough being on that tightrope.

Comments

  1. Oh, Terri. My heart aches for you today. I love you and I will be praying for you. Sorry I can't do the hugging part but I would if I could!!!!

    Take care, Mama!

    Debbi

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  2. I can't even begin to imagine what you are going through or what you are feeling Terri, but please know that I am praying for Nathan and your family! God bless you all!

    Blessings!
    ~Nadine

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  3. My thoughts and prayers are with you today. No pain hurts a mother more than her child's pain. I will pray that God will lead you to the right people to help your son.

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  4. Oh darling...things would be so much easier to handle if YOU were in his shoes...but to watch our children walk this road is so very very hard.

    Praying for the both of you!!

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  5. Terri, I love you, I am praying for you, and if I could I would give you a big hug. Know that I have tears now and my heart is hurting for you, Nathan, and your family watching him go through this. You are doing all you can. Nathan is God's creation created the way He wants him to be. Please let him know EVERYBODY has something wrong with them. I pray he can get through this "feeling different" and trust God who knows he's "special to Him." I'm so glad he has you and your husband to encourage him and love him. That's important to a hurting person. A job is hard to find for anyone these days. I'm sure God will lead Nathan to where He wants him to be.
    Know that I will be praying for you all.
    God bless, Kathy in Illinois

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  6. Terri, I'm so grieved for your feelings, and understand them very well.
    I wonder if there are any openings on a permanent basis within the firefighting team? That is a huge interest of Nathan's I think.
    You will have to imagine all the hugs that are coming your way, but know that you will be prayed for.

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  7. Oh Terri, I wish I could hug you right now. I don't have any words of wisdom, but I am praying for you and Nathan. Lots of love to you, xxx

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  8. Just had to write a wee note to let you know that I too feel your pain. You have been very honest about how you feel and that has really helped me. I am the grandmother and one of my granddaughters has some learning difficulties, she is 22 years old and has yet to find a permanent job. She is sent from one placement to another but as there are no jobs here in the uk either she feels she is at the bottom of the pile. She belongs to the Lord and is a lovely girl and we love her so much. You sharing the problems you face has helped me and as I pray for my granddaughter I will add your son to my prayer list. Much love from Scotland Nell xx

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  9. Just sending you some really big HUGS!!!

    Coleen

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  10. Hugs, Terri - We're praying for Nathan. It's hard for anyone to find a job these days, I can only imagine what he's going through. I'll ask Mike if he has any ideas? Sometimes you have to think outside the box - which I'm sure you're doing, too, but two heads are better than one. Love you guys!

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  11. From one Mommy of a child who in God's eyes is "No Ordinary Child"... to another...

    A huge, tight, all-enveloping hug...

    And to Nathan... You rock big guy! You are so very special and God has a Hope and a Future that is JUST for you!

    Hang in there!

    From South Africa,

    Many blessings,

    Liezel

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  12. Maybe you could find some leads on possible jobs by networking through your church (congregation or administration) or other churces. Is it possible for Nathan to live independantly? He seems to be a good cook! If he were to find a job an hour away, could he manage? Maybe he could share an apartment or a house. Would there be anyone in your congregation who could help him find a room mate across the river who could look out for him a bit?
    Perhaps Nathan should consider taking part time jobs or even volunteer work to gain experience and confidence. Work up to that full time job.

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  13. Anonymous, thank you for your suggestions. Nathan is looking for both full-time and part-time positions. We have pursued all possibilities, including networking. Yes, he can live independently but until he gets a job that is not going to happen! The other issue is that he is on the fire department here and has to live in this town in order to serve. It's complicated! :-)

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  14. I don't even look in on your blog everyday but today I thought of you because I wondered if you would help me!
    I have two children on the autism spectrum : the oldest, who is 17 , has Aspergers with learning disabilities. The third, a daughter of 12;she is diagnosed with Pervasive Developmental disorder, she is intellectually disabled . I am not where you are yet but approaching that stage ... lots of questions for the future. I will pray for you, your son and family.
    We live at a Bible camp in Connecticut year round. Every summer our denomination has youth camps for two weeks. The First is the jr. youth the second is the senior camp along with family camp meeting. This year for the first time we are sending our daughter to the jr. camp. Before this she has always been busy with summer school, then a YMCY day camp. She has always had knowledgable people working with her including a "Para". There are good things about having her go to an overnight camp a few hundred feet from our house!For one I will be able to administer medication. The thing I am concerned about is the camp counselor. I would like to do what I can to help her know what to expect. Do YOU know of a good handout that explains in layman's language about ASDs ?
    Again, I really feel for you and will pray.

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    1. Hi Heather. Let me get back to you tomorrow. I've had a really long day and my brain isn't working properly. I'll check some of the things I have and see if it would work for you.

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    2. Heather, there is the website Autism Speaks that is helpful, but this site seems to have the best description to be able to give to a camp counselor: http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism/what-is-autism-easy-read.aspx

      Nathan is on the PPD-NOS side of things, which makes it difficult.

      Thank you for your prayers! I hope your daughter enjoys camp.

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  15. Terri,
    Ever since I "met" you on CHFWeb, I've prayed for Nathan when I think of him. (((HUGS))) to you today as I will pray for him and you. :-)

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  16. Dear Terri ~ Sending more hugs your way! Praying for you both. God has brought Nathan so far and He will complete the good work in Him.

    Love,
    Sharon

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  17. Dear Terri - I am a little behind in reading your posts - and while I read almost daily - I rarely reply since I feel I don't know you well enough to always do so. I really wanted to respond to this today though.
    I have long felt that I wish I lived near YOU just because YOU seem as though you would be the most awesome, inspiring friend a person could ever ask for! SO today, while you are feeling so low, I really wish I could be there for you - to give you that big hug you need! For now - prayer will have to suffice. May GOD bless you and your whole family and may HE help you to know exactly what to say to the people at that agency. And may HE also direct them in wisdom to know what is best to do for Nathan.
    GOD BLESS YOU TERRI!
    Sandi (in Maryland)

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  18. Consider yourself hugged dear friend. Nathan is special. May the Lord use Him in mighty ways!

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  19. Terri,

    Thinking of you and Nathan during this trying time for him. What about thinking outside the box, as others have suggested. If he is good at something like baking, woodwork, hobbies, why not give that a try and start an independent career. Being your own boss does have its advantages! A friend of mine does multiple crafts and makes the rounds in the spring and fall and makes out very well financially from that.

    Sandy

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