A Reason for Hope

It's so easy in blogdom to paint a picture of your life to make everything look wonderful. I've read so many blogs where it just seems like the person writing has everything together. Their husband is perfect. Their children are perfect. Their lives look perfect. Yet, I also know that nobody is perfect.

For the most part, I do post about the positive. I mean, who wants to read posts that are constantly whining and complaining? I try to be upbeat and not always share the not so good things.

However, today I wanted to keep it real for a bit. The reason I want to do that is so that others who are struggling with similar things will know that they are not alone. That there are others who are going through the same thing.

Autism.

It's something we have learned so much about the past few years. Unfortunately, because Nathan is high functioning, it took 18 years and a very traumatic experience caused by him to finally get him diagnosed. Over the years, the word "autism" would run through my mind, but I kept thinking that if that was the case a doctor would have picked it up.

Yet, we went to the doctors only for illnesses and well child visits. Nathan didn't have all the characteristics of many autistic children. Though, in hindsight, many of the markers were there - he couldn't talk, he didn't interact with other children, he wouldn't look at people when he talked to them, he obsessed about things, he would literally scream and shake at loud noises.

However, we never brought these things up at the doctor's office. To me, that was just part of who he was and nineteen years ago, autism wasn't in the news like it is now. So, I struggle with extreme guilt that if I had not been so consumed with working I would have gotten him the help he needed earlier. I feel guilty that we should have known something was wrong.

Dealing with him on a daily basis can be exhausting at times. I lose it every now and then. Many nights I wake up and worry about his future. There are days when I don't want to deal with it anymore.

It's hard on me when people roll their eyes at me when I'm trying to share some of the things he struggles with. I've had people tell me that he just needs to "get over it." That makes me feel very alone in the midst of a difficult struggle. They don't understand that there is not a switch in his brain that can shut autism off and on.

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Nathan obsesses about things and the fire department is all he thinks about. He fixates on the fact that he has to be at every single event or fire call. It doesn't matter if we are in the middle of a major family event or church or anything. That is all he thinks about.

Nathan parrots just about anything he hears. Because he struggles to fit in socially, he basically just repeats conversations he hears. Sometimes, it is inappropriate. Sometimes, it makes no sense to the topic of conversation. He cannot read social cues and doesn't pick up on when he is being annoying to others.

There is a self-centeredness that comes with autism. The world revolves around him and he does not empathize with others well. It would never occur to him that we may be tired or not feeling well or sad. It is not easy for him to put himself in another's shoes.

However, I don't want to share just the negative. There are many positives about this child. He is compliant. He will do whatever I ask him to do and do it fairly cheerfully. As long as it's not interfering with one of his obsessions. lol

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There is an innocence about Nathan that is endearing. He is still very childlike in his responses to things. The school psychologist put it well. She felt that he is emotionally fragile and sweet. He is eager to please. He really wants to do well and help others. His reasoning is just "off" at times.

He is friendly. For all his inability to socialize in an acceptable way, he enjoys people. He likes being around others. He just can't take them in large doses. The mall or places where there are masses of people make him extremely anxious. But one on one or in small groups, he loves people.

Nathan will be with us for a long time. He could live independently with support and that is the goal. There is an agency that deals with adults with disabilities and the school has started the process for them to begin working with him next year. However, we know that he will be with us longer than the average child.

So, I keep praying and asking the Lord for help. I pray for patience on a daily basis. I have been changed by having an autistic child. The Lord has been teaching me to look outside of myself and to lean on Him. I can't do this on my own strength and it's only through His help that I can get through.

There are days that I feel a sense of despair and it's usually after a blow-up, yet He continually reminds me that He has a plan for Nathan. God loves Nathan more than I ever could and that gives me hope!

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Comments

  1. Terri, my heart goes out to you as a mother, and I know that it's good to talk about these things openly. Please be careful though, about how much detail you include on your blog, because there are some people out there who would take advantage of so much personal information about us. Lovingly, Tina xx

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  2. Dear Terri, what a brave post this is. As a grandmother of a mildly autistic boy, and having worked with autistic adults, I can empathise so much with you.
    No amount of 'he'll get over it' will ever be true. The best thing is that he has a loving and understanding family who will care for him. I see how hard it is for my daughter too.
    May God give you that extra pateince that you will need.xx

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  3. Terri - please do not feel guilty about when you found help for Nathan. Things happen at the time they are supposed to happen, maybe?
    I have worked with many children with autism. Most took an age to be diagnosed accurately. Nathan has seen many many professionals along the way and no-one suggested autism. As you say he is high functioning many people missed this not just you, my love.
    It seems to me that you have enough to deal with without adding your own guilt to the mix. Hand it all over to our Father - he can take care of the guilt for you :)
    Similarly other people's ignorance - how fortunate they are that they know so little about autism. Give that to the Father too Terri!
    You are often in my prayers - I pray that your fears for your beautiful boy are soothed. You are a brilliant Mom, Terri - never forget that.
    L.x.

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  4. I am praying for Nathan and your family.
    God bless, Kathy in Illinois

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  5. what a blessed young man to have the family that God put him in! I don't know if I've ever shared with you that I have a younger brother with Cerebral Palsy. He does not walk or talk (He is 28 years old) but he is the sunshine of our family. There are many times we talk about how our family would be so boring without Nick. He makes us smile every day! He loves people and laughing. God makes these people for a reason. I don't know why, but maybe it has to do with developing our character. Seeing that God does not make mistakes. He has a purpose for every living being on this earth. What an awesome God!
    One of the things I notice on your blog is how very much you are devoted to your family. You bless me with your encouraging words.
    God bless.

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  6. Terri, I will be praying for you and your family now more than ever. I am proud that you are my co-worker and that you have let us know your trial. Your strong faith in God and prayer will get you through the valley. He has promised us in His prayer, ye tho I walk through the valley, he will be with us. God bless Nina

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  7. Sharing our difficulties come at a price to us, but they touch others with empathy. I admire you for "keeping it real." We all have difficult circumstances and I've found hearing from someone who is going through the same difficulty is a blessing. I love how you share how sweet and helpful Nathan is. May God bless you as you continue on the road God has chosen for you.

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  8. Thanks for being real and transparent. You won't find anyone perfect or have it all together this side of heaven. I think it is important, especially for those of us in ministry that we live transparent lives, although the whole world doesn't need to know our deepest secrets. Where else can we find the grace of God except with our brothers and sisters in Christ? Press on dear sister, stay close to our loving Savior through His precious Word. Praying for you Terri as you go back to work. Don't look back, press forward.

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  9. Terri, I think we have much in common. My eldest son has Aspergers Syndrome. Like Nathan he is the eldest of 3 children, and I think Nathan seems a little on the small side in the pics? My son is the same. He is 27 now, still mainly living at home, and sadly unable to get a job, even though he has a university degree. Sometimes he stays with his girlfriend about an hour away.

    It's an 'invisible' disability isn't it, which leads to people misunderstanding him, and when he was younger we were often accused of not bringing him up properly, as people thought he was just unruly.

    He was 14 when he was diagnosed. We were relieved, and felt that maybe we weren't such bad parents as people seemed to think we were after all.

    Every blessing for the future x

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  10. Terri, I so enjoyed Nathan (all the kids) this summer. I think you and Dan have done a great job with your family. I remember meeting you at my high school graduation when Nathan was an infant. He was just adorable! I would never have thought that he would be my nephew! And I am so glad he is! I admire you as a mother and as my sister in law! Love you!

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  11. Dear Terri, as I read this post I just felt that God would remind you of something. Those feelings of guilt don't come from Him. Romans 8: 1 & 2 says 'Therefore, there is now no condemnation for those who are in Christ Jesus, because through Christ Jesus the law of the Spirit of life set me free from the law of sin and death.' Jesus died to set you free from those feelings that would pull you down, and punish yourself. You are a mum, with all the complicated feelings and emotions that that entails regarding our children. Bless you. x

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  12. Oh Terri, what a wonderful post! We have been having so many issues with our son lately that this just brought tears to my eyes. I realize I am not alone and your words bring me strength and encouragment. There is a reason God gave you Nathan and a reason you are his mother. Our heavenly father does have a plan in all this. Your words about how God loves Nathan more than you reminds me that God also loves my son and has a plan for him, even when in my eyes his future is dim at times. Thank you so much for sharing this with all of us.
    Blessings to you and your dear sweet family.

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  13. Terri - it's Jamie from CHFWeb. I don't have a child with autism, and I don't know any grown boys/men with it - though I've seen a handful of children. Your post helped me to see this from a mommy-aspect, and I'll try to keep these things in mind for the future when I interact with families.

    I had a bit of time to myself today, and thought I'd look to see who on CHF has blogs, which is how I found your site, and this post. I really appreciate your willingness to be open and real about being a mother of an autistic child - you have a very handsome family, and you are right - on paper/blogs it seems as if everyone's lives are picture perfect...I'm sure your offering of realness and reality will be a *blessing* to someone relating with a loved one the same way you are with your son. He's a very fortunate young man to have you as parents, and you sound as if you are already aware that you are blessed by and with him.

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  14. I know that you carry a lot on your shoulders but I truly believe that God does not give children like Nathan to just any parent.

    There are those people who can have a child like Nathan and see all the love and good things about him and can nurture all those qualifications in that child. you and Dan are one of those parents.

    There are also blessings to be experienced by having such a child that others will never know.

    God in his infinite wisdom chose you for this job and you are doing an amazing job. You are a wonderful parent and should be very proud of the job that you are doing.

    Someday, God will say to you "Well done good and faithful child of mine!"

    Love,
    Mom

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  15. Terri - I was sent over by cmarie @ Day by Day after I wrote about my son Colin. I tell myself over and over and over again, God has a plan for Colin that I may never understand, but He is trusting me to care for this kid, and He is equipping both of us morning after morning.

    God bless you, my sister.

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  16. You hear "he needs to get over it." I hear "She's SUCH a blessing!" Either way, people have no idea. Even today, when autism is front and center. If they don't know anyone on the spectrum, they are clueless.

    Thanks for sharing about your son and your struggles. Moms like us need to help others understand. That way, they can teach their children, because, after all, children today will be growing up to possibly be caregivers of our kids in the future!

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