It’s the Small Things in Life: Living With Special Needs Siblings
We hear it all the time. It’s the small things in life that are important. And it’s true. I feel this even more as the mom to special needs children. Yes, I feel it for them, but more often lately, I feel it for my typical children.
When Even Small Things are Impossible
We recently had a situation where Apollo was excited for days about a friend riding the bus home with him and playing at our house. It is early release all week and he was looking forward to an afternoon of play. This is a normal enough scenario. Something like this is so exciting to a third grader and his friend.
Unfortunately, the night before his brother had a huge escalation, destroying (by hand) our piano, attempting to break a window, trashing the house. Apollo was scared by the escalation (as any 8-year-old would be). After things had calmed down, we watched a movie together (Chuck, myself, and the kids) and had ice cream. We try (in vain, I’m sure) to “overwrite” the memories of the bad times with good times. In this case, with a movie and ice cream.
The next morning I awoke to the aftermath of my son’s rage. It’s difficult enough for our other children to live through these scenarios without robbing them of the small things like a friend coming home to play. So once Apollo was off to school, I rushed around the house. I obviously couldn’t move a broken piano out of my house by myself, but I picked up the thrown books and papers, hauled the broken pieces outdoors, vacuumed and cleaned the playroom so Apollo could have a fun afternoon with his friend.
The Small Things In Life My Typical Kids Miss Out On
My typical kids miss out on so many of the small things in life. And those many small things add up to big things. Add up, in fact, to the whole of their childhood experience.
My kids will only invite a small number of trusted friends over to the house.
They hate answering questions about the extreme damage to our house. And even more the follow-up question, “why don’t your parents just get it fixed ?”
They hate explaining to their friends why they have no doors on their bedrooms (because they have been broken, repeatedly).
Jubilee, in particular, hates answering curious questions about why her brother doesn’t attend school (I’ve told her just to say he’s homeschooling).
Other kids have had to ask to stay at a friend’s house, last minute when Chuck was working and I couldn’t leave in the middle of an escalation.
Yesterday I had to cancel Apollo’s student-led conference at, literally, the last minute because I couldn’t leave the house.
Most times Chuck and I have to take turns attending the kids’ events (band, games, etc) because of our son’s behaviors.
We no longer attend church as a family because we can’t.
Every evening, Monday-Friday is filled with ABA therapy either Chuck or myself needs to be present for.
Maintaining a Marriage with Special Needs Kids
If I’m honest, it’s hard not to resent Chuck sometimes, which really isn’t fair at all. He not only has to work so we can pay our bills, but he also has to work to afford the fancy health insurance that covers our son’s needs. (Don’t get me started on how the state has let us down.) But the reality is, Chuck isn’t always here when my son escalates. I am left making split-second decisions, on how to proceed, alone.
And then I feel guilty for feeling resentful, because imagine if I needed a job to financially support our children as well?
All I Ever Wanted Was the Small Things
All I ever wanted was to give my children a safe, secure, happy home. I want each one of my children to know they are valued and loved just for being them. I want them to know that they are an invaluable piece to this puzzle we call family.
We try out best to give the time and attention to our typical kids that they need and deserve, but the reality is, escalation trumps everything.
It’s no secret that some of my children struggle with anxiety and several are diagnosed with OCD. I have no doubt that the frequent escalations at home contribute to that. People tell me to be sure and take care of myself but I cannot.
I still have not met up with a friend I had plans with in April, and then again this summer, due to escalations both days. I planned to go to a knitting afternoon one mile from my house on Sunday, but couldn’t, due to an escalation in progress. Knitting with friends on a Sunday afternoon is a small thing, but nothing in our house is too big or small to be disrupted by an escalation. I have no doubt that I need a therapist, but my schedule literally does not allow for it.
So there you have it. The small things in life all add up to the big things and often we are simply left to pick up the pieces.
Will your insurance cover residential treatment? If it escalates beyond destruction of property into injuring one of you, it becomes a police matter and things would be out of your hands. If H had not gone into intensive treatment (for 3 years) he would not be living at home, and he very well may have ended up in the criminal justice system.
That’s so heartbreaking…I’m really sorry for you and your children, all of them. It’s very difficult situation and I’m going ot pray for you to have wisdom in your decisions (as it seems to be you have some difficult decisions to take)…. please keep us posted and stay strong in the meantime.
My heart just aches reading this. YOU ARE NOT ALONE!!! I lived through this for countless years with two of my sons (different degrees, but the same results) and what you are writing/experiencing is spot on EXACTLY what we went through – minus the ABA therapy (since my one son wasn’t given an official dx of autism until he was 17 and he literally went to jail for violent behavior less than a week after that). The other son had a behavior aid, a home based therapist who threw in the towel after 7 mos (after we were told he was the best of the best and if anyone could help our son it would be him), and tried countless times to have cps take our other children away because we were so mean to him. He ended up going to work with my husband from the age of 16-18 and would just sit in a chair all day, reading books and making little paper figures to entertain himself with. He refused to do any school work, and threatened to run away if we made him go to the high school that had a special needs classroom (which we fought to get him into – using a special needs advocate – and then they kept trying to write into the IEP that he was too high functioning for it). Fortunately, my husband had a job where that was possible (but certainly a HUGE strain on his nerves) AND my son was extremely small (but strong!) for his age and was afraid of what my husband would do if he raged or ran away from there. He saved most of his rages for when he was with me. You simply cannot explain to people why your family isn’t attending events all together or church. As important as raising my children in church was, I still cannot commit to regular church attendance with my children left at home. The lack of understanding by those good, faithful Christians that we attended with was just too painful to overcome. My faith is strong, my belief is complete, but I just can’t put myself out there anymore to be judged and ridiculed by those who haven’t got a clue. I know people say to get help for yourself, but exactly when do you do that? Do you have a line of people waiting to babysit the rager if only you’d ask? I sure didn’t.
Your kids may remember the rages and the disappointments, but they will also remember how much you loved them and kept them safe from him. Keep making the memories with your kids!
Praying for you and yours….
My heart goes out to your whole family. A thought struck me as I read your post – I’m not sure it’ll be any good to you, but here goes just in case: would it be helpful to build some kind of raging shed on your property? A place that might be filled with thrift store dishes that can be broken, furniture that can be smashed, etc? (My husband would love to let off steam in a place like that!). A place you could take your son, and he could rage, without posing a risk to your family? May God make your ways straight, and provide for all of your needs.
Kids are wonderful. They are tough and prefer good things over bad things. As long as they feel their parents love they will always be ready to forget the bad memories and keep the good ones.
Thank you for sharing!!!! For those in similar situations, it is good for them to know they are not alone. For others, you have educated them. You have done well, and you will be blessed, good and faithful servant. God be with you and may he grant you sweet relief from your burdens.
Oh but surely, all would be well if you simply used the correct form of sticker chart, right?? /snark
My heart aches for you, and for your kids, and my kids, as I am reading this. The others do miss out on SO much. Our oldest has cerebral palsy, and he is supposed to be doing a home PT program, and to be starting vision integration therapy soon, but it never happens as I am always dealing with his sister’s behavior. And I feel terrible because he already spent 4+ years in the orphanage getting next to no therapy, so surely now I can and should do better? Our child with dangerous behavior is only seven, and she’s chilling enough (she again threatened matter-of-factly to kill her baby sister last week, and because of this sort of thing and her self-harm, can never ever be out of sight of an adult) but we still can with difficulty physically restrain her for her safety when need be. I can only imagine the toll a nearly-grown person smashing up the house takes on all of you. I second the suggestion of residential treatment. I know it’s the last thing we mamas want to consider, and there are tons of hoops to jump through to make it happen, but sometimes it is the most healing thing for everyone. You and your other kids need to be able to breathe sometimes. Praying for peace for you all tonight. <3 <3
That is terribly hard. There are no appropriate words for how difficult that reality is.
I don’t know if you have heard of Gyro-stim or not but I saw it on another blog I read and their son has some of the same difficulties Mordecia does. The Gyro-stim seem to help him. Gyrostim – hope or more heartache. Day 1
So Cav received an autism diagnosis just over a year ago. He doesn’t really have typical autism but persistent institutional autism. He met every marker for the diagnosis and quite frankly if it helps us get resources for him then I am fine with the label.
About 4 months after, we went to an autism fair, and looked around, ended up with a huge stack of pamphlets and truly left more confused then when we started. It’s a new language, that quite frankly I don’t speak. Also because it is institutional and not organic (is that right?) he doesn’t fit what people think of autism. Throw a little RAD in the mix and well, we don’t have a typical child or a typical “cure.”
Here goes – Gyro-stim affects the vestibular area of the brain. Ultimately it works along the principles of working the brain until fatigue so that the brain will regenerate itself the same as if we were lifting weights. Ultimately it is hoped that as the brain muscle repairs itself from the workout, it will rewire, or change the wiring. BUT and here is why I am hopeful this will work.
I found this information on nspt4kids.com (I found other sites with similar info but this one was the ~lightbulb where I could check off parts.
http://nspt4kids.com/healthtopics-and-conditions-database/vestibular-processing/