Life: Where the Rubber Meets the Road.

Recently I was in the hospital. Today marks a week that I am back home. Official diagnosis was Sepsis, yes… I could have died.

If there is only one thing I can depend upon in life, it is that there is no way to predict with any accuracy what the next day, or even the next hour will bring. This was no different. One moment I am speaking with my sister- recovering from what I thought was a stomach bug or other similar, mostly harmless ailment- and the next moment I realize I am running a fever. A minute after that I started to feel confused… My speech slowed down, my words coming only with serious effort. I was scared.

For four nights, I was in the hospital. God provided caring people to take care of our kids. My husband brought the kids to see me each day. ❤ For some reason everyone did great. My hubby did a fantastic job being Parent on Duty. He arranged care for the kids, went to work, and came home to make them dinner and put them to bed. I wish I could attribute this to my mad parenting skills, but to tell the unvarnished truth, I am one frustrated parent right now.

I am watching my younger son Minimus surpass my older son in almost every way. Minimus hears things I tell him. He complies easily (well compared to Max he does) he remembers rules and guidelines. He gets ‘stuck’ toddler style, but only about half as often and probably less, than Max did. Maximus gets stuck often, even now. Toddler style things; wrong cup, wrong person opened the bottle, food cut into squares instead of strips, choosing the ‘wrong’ underwear for the day. For a long time I had felt we were making progress, but lately…. Everything is going downhill again, but only for Maximus. L

As Minimus started really talking last year, I realized just how far behind Maximus had been… and for how long. Huge Momma-guilt attack. How long was I in denial? I don’t know.

The difference between Maximus and Minimus is this- Minimus accepts instruction. I don’t mean every single time of course. I still have to deal with shrieks and no’s and thrown toys. The difference is more subtle than that. I can’t define it, but it is there. The worst part is- Maximus SEES his little brother being more successful than he is. My friend who watched the boys one of my hospital days told me that Max played off to the side, by himself, while Minimus played games and shared toys with her two children. She brought the kids over this week so they could play and we could catch up, and I watched the same thing happen. And, as is usually the case, when they left Maximus had a full scale meltdown.

“Mommy! I had such a bad day! (Really he had done quite well) Why am I always such a bad boy??!! (I have never ONCE told him anything of the sort!) Why is it always so hard?! Why do I always have such a bad day??!!” He was sobbing, clinging to me. I wanted to cry along with him. I didn’t have any answers.

Max KNOWS. He knows that Minimus doesn’t get carried kicking and screaming from the room several times a day. He knows Minim doesn’t scream “No it isn’t!!” in response to 50% of what I say. He knows Minim doesn’t have to have his fingers pried off of dangerous things, or be physically stopped from hurting himself or others. He knows that Minim doesn’t need to hide under tables when the room gets noisy. He knows that Minim doesn’t have to fight himself not to run away at the slightest stress. He KNOWS. He is different.

It is hard to see correction and instruction bear fruit in Minimus after two or three events… and see it continue to have only partial success with Max. It is hard to continue to see him as he is. I find myself thinking, ‘He OUGHT to…’ and ‘He shouldn’t do that…’ and I feel very, very angry. Nothing like a little wasted effort to make me feel like a bomb about to go off. My praying has mostly been crying out to God, saying, ‘I don’t know how to do this!!’

Maximus had an evaluation with a pediatric psychiatrist a few weeks ago. At the end of the eval, they told me, “We feel it is Autism. We’ll send you the full report in the mail. In the meantime, please have him evaluated for Sensory Processing Disorder, and here’s a prescription for a One-on-one support person. We recommend he NOT go to kindergarten this year.”

I am still waiting for that evaluation report to arrive.

gg

 

part 2

 

Advertisements

About greenegem

Wielder of the Pen of Deep Wit.
This entry was posted in Figuring it out, Grace-Based Discipline, Greenegem's Story and tagged , , , , , , , , . Bookmark the permalink.

21 Responses to Life: Where the Rubber Meets the Road.

  1. TealRose says:

    Oh Greengem !!! God does work in mysterious ways indeed! I am in another group – and a young man there is admin and talking about himself, with Auditory Processing Disorder. Just a few moments ago before I read your note above, I was checking out APD as it fits with what my now 31 yr old daughter was diagnosed with. [Some time back, so wasn’t totally sure about her .. it was given a slightly different name]. It mentioned exactly the child that has problems in noisy situations etc … And then .. I came here! I know he helps his students .. and may be able to help you understand/help your son. Would you like me to ask him? Can I email / msg you privately perhaps ??

    God bless!

  2. Kristal says:

    prayers for you and your family.

  3. Raqual says:

    Stay strong my friend! Remember that the Lord will not let us go through more than we can handle – so he’s already equiped you to be the best mom Max could need. He’s already given you the skills needed to help him best. How lucky is Max that you are a gentle, connected mom and not one who would have spanked or screamed at him with every setback.
    I’m don’t know too much but it sounds like it might be sensory processing disorder. But at least once you know you can do your best with the knowledge you have and make his life more comfortable.
    Much love!

    • greenegem says:

      Thank you, Raqual. 🙂 I need God’s Grace every single minute to get through those times. God also knows how often I fail. 😦 We see sensory issues too, and we’re working on getting those specific things tested. Once we have the tests done, hopefully we can find ways to teach him to cope.

      gg

  4. Rebecca says:

    i’m a relatively new reader and am encouraged in my parenting journey as i read yours. this advice comes from this place: if this helps you, wonderful. if it doesn’t resound with you when examined, then ignore it completely. i suggest that along with all the other testing, you would also investigate nutrition and allergies/sensitivities, especially good info in Gut & Psychology Syndrome by Dr. Natasha Campbell-McBride. my daughter exhibits those same kinds of behaviors, since birth even, but when we avoid trigger foods, she can communicate her feelings of frustration and being overwhelmed by sounds etc. instead of exploding in reaction to them. she’s 4 years old and this self-awareness/self-control difference is like the difference between a 2 year old and a 5 year old. that’s my only advice, as if you need any more opinions 🙂 i just felt i had to share this, in case you hadn’t heard it before. keep on living and writing, it’s an encouragement to me in my walk!

    • greenegem says:

      I appreciate your advice! We noticed Maximus’ sensitivities to food dyes when he was about 18 months old. dead of summer- popsicle time, yk? :\ We already avoid all food dyes, all refined sugars and all frankenfoodish ingredients. I am looking at doing the GAPS diet for me and Maximus. Thank goodness I love to cook! 😀 His behaviors deteriorate rapidly with exposure to any corn syrup products, or even brown sugar. AN aquaintance of mine has had some amazing results with her son, on a gut healing diet, so I have high hopes for Max. I am so glad you are finding value here! I will definitekly keep writing. 😀

      gg

  5. Michelle says:

    Wow, Greenegem. What an intense week you’ve had. My heart has been heavy for you all day after reading this post this morning. Since coming to learn about and beginning to walk down the road of gentle discipline I have thought about how many of the “one size fits all” punitive parenting systems could never work for children with special needs. I have wondered: do those parents who have repeatedly, daily spanked their children only to later find out the child had a cognitive problem beyond their controlling just feel awful for hitting their child over it? I then think how apt gentle discipline is for the parent of a special needs/autistic child. While driving today I was thinking over this same thing. Can parents call an action a “sin” that the child has literally *no* control over? I was even thinking of someone with turrets syndrome: sure, yelling unkind things to people would be a sin, but for someone with turrets, is it actually a sin? So how could we say the same about children with special behavioral needs? (Of course, I don’t think parents should be calling anything their children do as “sins” because it is not our place to say of anyone where/how they are sinning; that is the place of God as judge.)

    Your journey has already been inspiring, and I firmly believe it will be even MORE inspiring as you walk down this road. God surely does armor us, giving us the strength we don’t have; For when we are weak, it is then He is strong! I know you previously had some devisions with your father over your parenting methodology. I will be curious how this diagnosis of maximus will change/affect his view.

    • greenegem says:

      THat’s an interesting question… I did not see my parent’s veiw of how they raised me change at all, even when I was diagnosed with ADD at 18. I think they believe that I did as well as I did BECAUSE of the way they raised me. I believe that it created worlds of needless anxiety, fear and self hatred in me. Its tough to say what my father will think. Then too, I know my parents think that somehow spanking in particular somehow educates a child as to the error of his ways, that we would never understand right from wrong without having been strictly punished as children.

      As always I can use your prayers. WE have ‘a long row to hoe’ as they say ’round here. 😉

      gg

  6. Rebeca says:

    I’ve been reading for a while and don’t know if I’ve commented before or not. Thanks for sharing this. He sounds in many ways like my oldest, who is 8. When it’s your first, you don’t realize just how different they are. I have four children, and he probably takes about 80% of my time and attention.
    We have had him on the GAPS diet as well.
    I don’t have any great advice, but know you aren’t alone. :>
    Thanks for your blog. I’m sad to say that it’s only recently I’ve begun to rethink “punitive parenting”, and it’s nice to find other parents further in that journey that I am learning so much from. Many blessings to you…
    Rebeca

    • greenegem says:

      Rebecca,

      I just want to offer you big warm hugs (if you’re a hugger). ALL I can say to you is KEEP THINKING…. and RE thinking… and RE thinking. I highly recommend ‘Families Where Grace Is In Place’ (its a book) if you’d like some meaty relationship stuff to chew over. The author’s models of grace versus curse really put things in perspective for me.

      ❤ ❤
      gg

  7. Sharon says:

    I’m SO glad that you’re ok! You’re such a strong Mama!

  8. Claire says:

    Wow, things have been tough. What a great mama you are! Max is so blessed to have you on his team 🙂 (So is Min ;))

    On a more positive note, Happy birthday d2d :streamersandballoons
    And congratulations on reaching 50 posts 😀

  9. Leigha says:

    This is the first time that I’ve read your blog, I got here in a round-about kind of way. Hmmm? I have 7 children, one of them being special needs. There are several things that are important to remember (at least I think so, which, honestly doesn’t mean much):
    1. You are outside the box, don’t ever feel guilty about your situation being different than other people’s -it’s ok, God knows, don’t worry about what others think.
    2. Because of the uniqueness of children, and our special needs ones especially, we MUST listen to God and to our child about what way to go. There is no formula and we are to follow the leading of the Holy Spirit intently.

    In all, God’s love and tender mercies are amazingly comforting on the journey.

  10. Kristin says:

    I hopped on your blog from another blog and read your description of Max on this post. I thought quitely to myself “I bet he is somewhere on the spectrum”. Our oldest has Autism and my husband and I joke that we have “austdar”. That big kid throwing a fit at the store we recognize him as one of ours. The kid muttering to herself not being able to make a desicison between two toys, it’s one of ours.

    Autism has defined our life in may ways, both good and bad. I try to concentrate on the good. Autism has shown us how to the love the unloveable. My oldest smacked me in the almost constantly for a few years. I loved her anyway. She heard a friend say her parents were divorced and had a stepmom. She told me for an entire year that she wished I was gone so she coudl have a stepmom. (gosh, you just got to love steoreotypical, repetitive speech) I loved her anyway. She tells me the best part of her life is her stuffed animal. I love her anyway. I have been taught sacraficial love. I know in her own way, she loves me. A kiss from her 8 is priceless in my mind.

    lauren has taught me that people have value because they are not for what they could be or should have been. She show me profound sorrow and profound joy. We’ve often lived on extremes in our house, either the mountain or the valley. There’s no in between here.

    She struggles with things that come so easy for others. She watches her sister so easily have a conversation while she still talks at people not too them.

    one thing that i’ve always clung to is that throughout all the diagnoses Lauren has had and she’s had a bunch, she’s always been the same kid that i love the day after a diagnosis that she was the day before

    • greenegem says:

      oh yes, you do get it. 🙂 Maximus just said hello to his Grandpa today, for the first time EVER. Priceless. Totally spontaneous, “Hello Grandfather!!” and we were talking on the computer, over skype, so he could see him, too. Thank you very much for your words. ❤

      gg

  11. Pingback: Discipleship and Autism | Why Not Train A Child?

  12. Pingback: Adhesive: Life part 2 | Dare to Disciple

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s