Wednesday, November 16, 2022

An Emotional Hobbit Hole: Where I've Been

Please enjoy the shot of last winter as I totally didn't have a good image to put at the top of this post.  Sorry.

The road of a special needs parent is not an easy one.   It is kind of hard to explain what happens over time.  You get into this weird headspace over time as you watch your child not hit benchmarks that other children are hitting.  You kind of go through the grieving process over and over and over again as the years progress.  When something really not great happens, you just deal with it.  You really want to lean on someone, to share what is going on in your life, but at the same time you have this extreme sense of subconscious guilt.  There is always someone who is worse off than you are.   There is always a parent you see in the store or in passing where you realize just by looking at their situation that you have 100% nothing to complain about because your situation could be so much worse.  Then you feel worse for feeling bad that this or that happened and you just kind of clam up and just try to keep stoic and strong inside.  You watch people with kids who can do more than your child can and you want to cry some days, but there is always that voice saying, "It could be worse" and you just keep taking one day at a time, working with the limitations your child has been given and you do the best damn job you can by that child and loving them.  You celebrate THEIR successes, ignore what others do, work repeatedly to help them get past as many limitations as you can and you pray every night that maybe, by trying something new that God will help you find that you can get your child to a point they can live a somewhat independent life.  

It is the parent's way.  

Sometimes, though, things happen that just pull the rug out from under you and you feel like you are trying to keep your feet in quick sand and it just takes all of your emotional and physical energy to cope.  That's where I had to go this last month.

The new medication changes with Alvah were a mistake.  A bad one.  Alvah seemed like he was doing pretty well on lower doses of the new meds, so the doc and I talked about it and we decided to up his meds just a little bit to get him into a good spot and hopefully get his sleep patterns normalized.  What ended up happening was my son going completely off the rails when we upped his med, and I mean completely.  It is the worst he's EVER been and that was a bar I hoped to never have to surpass.  He punched holes in the walls of his room when you had to do something like drink a few sips of water or go to the bathroom and he started to eat the drywall after he had punched the hole.  His self harm went through the roof as well as him hitting other people.  I, in all honesty, was scared to death that I was losing him to his autism and I didn't know what I could do to help him.  I, as quickly as I could safely do, got his medication back down to really low levels, but it did not help.  I finally didn't give him any medication for 12 hours and then started him back on the Risperidone and Clonodine like he's been on for years.  That stopped the severe violence.  Thank God.  My husband, myself and my daughter felt worn torn after that long weekend...I can imagine how poor Alvah felt.  I still can't believe it was just a few days.  It was more than enough, though.  Since then, it has been a long month of getting his Risperidone where it needs to be, trying to get him sleeping okay (for him) and trying to come off of one heck of a adrenaline high from his erratic behaviors.  

He's getting better.  Thank God.  It is slow, though, as we need to get his bio chemistry leveled off and back on an even keel.  I started giving him a topical melatonin supplement that I just rub into his skin the morning and that has seemed to be helping, along with his roll on magnesium supplement I found.  I've been working with his swim teacher, a family friend, who has taken a bunch of different nutrition courses and things and has worked with special needs kids and adults for years and she's really been helping me to figure out more creative ways to try and get him some nutritional needs to help him as much as we can through non-medication means and help to level his mood off that way.

My husband spent a good week running around town trying to find enough wood paneling to hang in Alvah's room so we don't have to worry about him going through a bad pica phase and eating more of his walls, which was fun with the supply chain issues going on.  We finally have enough to get it done, so my husband is hoping to work on that starting this coming weekend.  

But, yeah, it hasn't been a good time.  

I'll report more on day to day things around here in the next post.  Honestly, just writing all of this out kind of exhausted me.  I'll get back to blogging here soon.  I just need to start getting caught up on everything around here so I have something to report.  So, stay tuned.  Hopefully the next post I'll have better news to report. 

24 comments:

  1. God bless you all! I am praying for y'all.
    Jo

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  2. God bless you and your family. So sorry that you have all gone through this. Glad you are getting things leveled out. Prayers for a calmer future. Sending huge hugs

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  3. My heart goes out to you. I don’t know what else to say. You’re doing the best you can and that’s enough. Treat yourself kindly when possible. Hugs to you and your family.
    Debbie

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  4. I'm so sorry! I hope you all can figure out the medicine soon.

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  5. I wondered where you'd gone. I always enjoy your posts so much.

    My grandson is autistic. It's a journey, and one that only other special needs parents and grandparents can understand. So ridiculously hard sometimes, and you don't know when things will improve. I just really hope things are going better for you and send a hug from the lower 48.

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  6. So sorry for the tought times. I have a 6 yer old grandson that they say isnt autistic but has all the signs. It is such a long battle for parents. You are a hero for keeping him at home and trying so hard to keep Alvah on an even path. Many kids would be in a residental program by his age. But dont feel guilty for what ever you have to do in the future . Your families safety is important too and your own mental health.

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  7. Hi Erika, it sounds like you and your family have been riding a big roller coaster that has been terrifying at times. As the mother of a grown up young man with autism, who has other life challenges as well, there is nothing I can say other than take it day by day. I go through worrying about what could happen with my son in the future, but the best thing to do is just put things in place for him now (keeping his medical benefits going, having good medical/mental health support for him, and your wills in order, along with whatever else you think is needed). This will help you relax and know things are as good as you can get them at this point. Then live day to day and take care of yourself too! Medications have been the challenge with my son also.

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  8. Just worry about your family, blogging while might be a release, needs to wait till Alvan's meds are better controlled.

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  9. So sorry for what you are going through

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  10. I am so very sorry to hear about your difficulties---not just your son's behavior but your struggles in dealing with the emotional toll it takes in terms of feeling bad because so many other families have troubles that are even worse. And just as we are heading into winter (I live in Fbks), when all the tribulations that come with extreme temps like worrying about car conking out and making sure you have survival gear all the time; the environment seems to be piling more on top of your troubles. I think you are courageous just in terms of putting one foot in front of the other every day, let alone writing it up for your readers. I hope some joy returns to your life and that this month you make time to enjoy your husband and your child. I know it seems selfish to say to try and get away from your son for an outing or two, but I think it is essential that you nurture each other. I think you are a hero, making the best out of a hard situation.

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  11. I'm so sorry you and your family are going through this. I hope that you will soon find the right combination of meds that will help your son as much as possible. I have no experience with autism but I know just dealing with kids can be exhausting so this sounds as though it is very challenging for all of you. I hope where he is at now continues to improve and the paneling sounds like a sensible solution for the walls. Ranee

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  12. Hi Erica, I really have no idea what it is like to live with an autistic child. From what I have read in your blog, challenging does not even begin to cover it. You and your husband and daughter are all things to Alvah. Not just parents and sister, but every type of caregiver under the sun. I am so impressed by all of you, keeping it as together as you can while living in a state that has a fairly harsh (but beautiful) environment. Take care of yourselves, so you stay healthy. Being a caregiver is so hard. I think it is a good thing to use your blog as a sounding board to alleviate stress. Don't bottle it up.
    Take care. Barb in PA

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  13. Erika please know that our family will be keeping your family in our thoughts and prayers! I shared your post with our daughter, who's son was just diagnosed with autism level 2. Your opening paragraph resonate right to her heart, and was comforted by your words. Stay strong and persistent, you are your sons biggest advocate, know that your not alone in this walk. Keeping you and your family in our hearts. Sincerely Dan and Jody

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  14. Prayers for your family. My cousin's child is the same and he raising the child alone. I helped when I lived near by.

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  15. Prayers for Alvah and your family.

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  16. Erika, wish I were there to give you a great big hug. I come to your site often because I love your hints, and I love your courage and "pluckiness." You are the real deal. Please remember that God gives the tough stuff to those He considers stellar souls, and you are one! Love to you,
    Anne from Montana

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  17. That sounds so very hard. Sending you lots of good thoughts & hoping you are able to find some good options for Alvah, and for your family.

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  18. I'm so sorry to hear you've had such a rough time with your son. My teenage son has SPD and when he was small he used to have epic meltdowns. It broke my heart because there was nothing I could do but hold him when it was over. He didn't want to be touched. I do pray things will get better for him very soon.

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  19. Sending you a big Hugggggg. And letting you know I just prayed for you and Alvah and the whole family.

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  20. I'm so sorry you have had such a bad time. I can relate to all your feelings. My son was diagnosed with asperger's syndrome iin his 30's. Although he is married with a child and is doing better than I ever thought, he will always need support. He is now 47. I have had lots of your feelings. Then reading your post today, I feel guilty for having those feelings as your experience has been worse than mine. I am proud of my son as he is a loving caring, honest man. He used to work when he was younger but hasn't been able to cope with the work environment for years. I've come to realize that its no good comparing our problems with others. I think you are doing an amazing job. You should all be proud of yourselves. I do love to hear about your life iin Alaska. Thank you

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  21. I've missed your posts. I'm sorry you've been going through so much with your son. You are a good mom to help him get past this medication issue and for everything else you do for your family. Have a blessed Thanksgiving.

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  22. I'm sorry for what you've been through. I don't think people know the emotional toll and stress that goes with parenting a special needs child. You can do absolutely everything you can and some days are just out of your control. I work with Special Ed students and see this often. Hugs to you.

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