Again
Sadly, for all us, but especially T2, she cycles through periods of behavior crisis. We’ve lived through countless difficult times and 5 or so remarkably bad periods, including a particularly prolonged cycle last summer. I wish I knew her triggers. Every time I think I figure it out, but then the next one happens with no resemblance to the last.
Because her behavior is never perfect, it’s never clear if she’s just being herself or if we are descending into something more troubling. Only once she’s fully ‘gone’, can we look back at the last few weeks and see her downward spiral.
And here we sit again. In the middle of a period of maladaptive behaviors. (Apparently this is the new buzzword. It’s supposed to be a better choice than ‘negative’. Maladaptive, negative, no matter what term you use, these behaviors suck.) The advice I can give myself matters little. Because each cycle can be worse, as she gets older and bigger. Her kicks and slaps have some real force behind them. Basic hygiene needs would be better undertaken with full-body armor.
As I’m sitting here, we haven’t been able to get her out of the house in over a week. I can only hope and pray she will make it back to school next week. Sometimes she won’t eat. She’s going days without getting into the shower. She hits, she kicks, she screams. And the screaming is the worst, because you can hear it from the other room, from behind closed doors, everywhere.
On a good day, she’s up and walking around the house, even if she won’t do anything. On a bad day, she’s laying down, under blankets, taking a swing at whoever comes near her.
And yes, it is hard to write things like that about my own child, whom I love dearly. So many who know her would be shocked to see her like she is right now.
Each cycle is hard; this one has drained me. She fell apart so quickly and with such force, I had to look at options I never thought I would need for a 10-year-old child. Only, as it turns out, we don’t have any options. There is nowhere for her to go, for respite, for care, for anything. To access one small option for even a short period of time, would take every single dollar she has in her limited funding, leaving us with no breaks or staff at all for a year. And that’s if we could even gain access.
This time (and I shudder to write this, but I have to get it out), one night, I had to put T1 in his room and lock the door to keep T2 away from him. I think the sight of him sitting on the floor as I shut the door, telling him it would be okay, will haunt me forever.
I’ve given up a lot of dreams, raising T2, which goes with the territory. But now, I feel like I am losing more, and the blessings we get from raising a special child seem overshadowed by feelings of loss. I think we will always have to deal with T2’s behavior cycles. Medication may not ever stop them. How will we ever be able to take a family vacation? What happens if she cycles while we are out of town – in a small hotel room? We couldn’t go without her – not only does that just seem inherently wrong – what happens if she cycles while we are gone? We couldn’t leave her with anyone knowing she may get aggressive. And now I know the truth that we have no real options for alternate care for her, not even for respite.
I cannot even begin to imagine what T1 thinks about all this. Yes, I talk to him and try to explain. Yes, I take him out of the house to distract him. But in the end, he alternates between hating the way things are, being scared, and, in a totally opposite, most endearing way, trying to help his sister. Look, T2, Bear is going to wash his hands. Don’t you want to, too? he’ll say, as he carefully walks Bear across the floor to the bathroom. It doesn’t work.
I’m just sad. Sad for my husband, who is often the only one T2 will tolerate. Sad for me. Sad for T1; very sad for T1. Sad for what now looks like the loss of many of our plans.
But mostly I’m sad for T2, who can’t help herself and can’t even talk to tell us what is going on inside. She has it worst of all.
New Clothes
Over the last year, I cannot believe how much T2 has grown. Her heard comes up past my chin and I can no longer really lift her to move her, even when absolutely necessary – which is, unfortunately, causing some problems here and there.
It also means that she has outgrown almost every single piece of clothing she owns. Over the past week, I have been buying new things and have assembled her a decent enough new wardrobe. All she needs is some more play shorts for summer camp and a pair or two of shoes. The bad thing about losing all of her clothes is that we are losing all of her junky t-shirts that she usually wears to camp. Oh well – we’ll survive.
Today, I cleaned out her closet draws and closet and replaced the old with the new. It’s a bit sad to see some of this stuff go. Like the dress she was wearing when I gave her a new pair of boots – I can so clearly remember her jumping up and down with glee, signing shoes and thank you after she opened the box.
See – look how happy
Here is are the piles from my sorting
Yes, that is Bear in the corning of this picture, and no, we are not getting rid of Bear!
Here is the mess of her closet with all the old clothes
And here is everything new, hanging up, waiting for her to come home and squeal with delight.
Okay, so technically she knows she has new clothes since I have been having her try most of them on, but she will be happy to see it all washed and hanging and waiting for her. She loves clothes. And I love me a happy T2!
Mexican Fiesta!
T1 and I recently finished up our unit on Mexico and naturally had a Mexican Fiesta to celebrate.
Well, we planned on having a Fiesta – but I forgot I had a meeting for T1 scheduled that same afternoon and somehow time got away from me before I was able to make our favorite quesadillas for dinner. But the day was still great!
To start the day, I made this delicious and totally not healthy Sopapilla Cheesecake for breakfast. Yes, it used canned crescent rolls, sugar and cream cheese. And butter. What completely unhealthy breakfast would not include butter? I got the recipe from T2′s CAP worker, but it turns out it is right there on the Pillsbury website.
All baked up and ready to eat
My kids ate this with abandon. I mean, who wouldn’t? It was a great start to our day. Well, except for the fact that T2 ended up having a few, umm, behavior problems at school and T1 was tired and cranky as soon as the sugar wore off. Ahem.
After dinner, we (well, really just T1 but T2 had a great time watching) bashed up the piñata we had made. This project was messy and took several days, but since I got my first ever I LOVE homeschool!! out of T1 after he had broken it apart, I will score it a win!
Here are our paper mache supplies, waiting….
I did a quick internet search and found a super easy recipe for the glue – 2 parts water to 1 part flour. Based on some comments, I added in a bit of salt to keep it from molding. You can also add in some cinnamon to cut down on the glue-y smell. You may notice both newspaper and printer paper in the photo above. That’s because I also read that using a top layer of plain white paper will make it easier to paint. I don’t know if it was easier, since I had no experience with paper mache at all but it was easy to paint.
Working, working, working. Dipping pieces of newspaper into this glue mixture is messy work!
I quickly realized that keeping it on the kitchen table wasn’t going to cut it, so I called D to hold it up while T1 and I paper mache-d it.
You can see T1 looks thrilled with his work! I didn’t realize it at the time, but that balloon was heavy. D really came through for us holding it up over the table. It took 3 days to dry and I think it only finally dried out because we hung it outside. So, mental note for piñata making – just hang the darn thing outside. It’ll dry much faster.
Next up – painting!
We just used leftover house paint that we had laying around. After the paint dried, I stuffed it full of treats and then duct-taped the hole on top closed. Yes, you read that right. I just used duct tape. Totally lazy, but there was no way I was going to paper mache again.
After dinner, we hung it from the basketball goal and T1 had at it.
It fell off almost right away. So, T1 finished it off on the ground. And was thrilled with the collection of candy and small toy frogs I had put in it.
I am working on my fun-mom side and, although I usually fail miserably, this time I succeeded and just pretended not to notice all of the candy he ate. I think this is when I got the I Love Homeschool! Of course.
All Kids are Special
A couple of weeks ago, T1 went to his monthly SibShop.
He’s missed a couple so we were adamant about getting him to this one, even though he almost didn’t go. They are kind of far away and he was also invited to a birthday party that night and his behavior had been horrific all day long. But in the end, he went.
And I was glad he did, because speaking at the SibShop was Dr. S., who is well known around these parts for his work with special needs children and their families. I told T1 that he was in for a treat, having Dr. S speak to him.
He made quite the impression on T1. Throughout breakfast the next morning, which we were finally eating after T2 finished going crazy and everyone else was all yelled out, he was downright chatty with his Mr. S said this and Mr. S said that.
T1 told me story after story that Dr. S had told them. Including one particular event involving a teenager with special needs and her response to not getting her way. After this story, all T1 had to say was I hope T2 won’t be a teenager for a long, long time….
Later that day, while we were out and about, he said the most poignant thing of all, just in passing. Mom, Mr. S says that all kids are special, not just the ones with special needs.
Indeed they are, T1, indeed they are.
And I am sorry you had to hear that from someone other than me. I’ll just add this to the Mommy-guilt I carry around because I can’t give you a normal childhood. But I do think your special. And I love you very much.
Afternoon Fun
I’ve had T1 in an art class for the past few weeks. It’s at an art center at one of the parks in town. Right behind the building is a playground. Usually we don’t stay after I pick him up, for various reasons.
But yesterday, when we leaving class, he tried again Can I play on the playground Mom? Much to his surprise and delight, I said sure. And he was off!
He had a great time, perfecting his swinging
And his climbing
After an afternoon of art and playground, he was filthy. Just like a boy should be. And given his tendency to be hesitant and shy, as much as I hate messiness, I am thrilled to see him that way.
I Got My “I Love” Back
Late last October, I decided to pull T1 out of public school and to homeschool him. The reasons were many but one came out on top – I just needed more time with him. Time to teach life skills, time to figure out just what he did and did not know, time away from the daily homework grind, time with him without his sister around constantly. His stutter had progressed so much that he hardly spoke at all.
Getting going has been rough – like an extended homework session. It seems that every bit of curriculum I chose for him was a bomb. Right there, that tells me I made the right choice. I didn’t even have a good handle on what would click with him.
And it has been a huge adjustment for him: he no longer has other students to hide behind. Everything that is presented, he has to learn and do himself. The daily release on the playground with his friends is gone. He has to follow the house rules constantly. And I require him to speak in full sentences with correct grammar *the horror!*
The speech was the biggest issue. It just broke my heart to see and hear him struggle so much to read aloud and talk to me. We chose to continue with school provided speech services in order to help him learn fluency strategies.
Our new speech therapist was not experienced with fluency issues. At all. She was trying to work with him and get to know him, but we were getting nowhere. One day, after his session, she talked to me about seeing a stuttering specialist. Her hope was that she would get specific goals and strategies to use with T1. Great idea.
Off we went. During the first evaluation visit, I mentioned in passing about a medication he takes. Really? Yes. Well, that medication is known to make stutters worse – please try something else if your pediatrician is willing. And then she gave me several recommendations.
After a consult with the doctor, we did switch him. The change came about a week later. Almost totally fluent speech. Just bumps and stutters on words that have always plagued him. No more grimacing. No more frustration. Just incredibly almost-smooth, almost-fluent speech. Even he noticed it, asking why his speech was suddenly so much easier.
Here’s the best part (and yes, I know it has taken me forever to get here!).
Now that he is home all day, no matter what, I give him plenty of hugs and I love you’s. For a very very long time, all I ever received in return was a mumbled me too. Until last week.
We were joking around, I was tickling him and hugging him, telling him I loved him, and telling him how great it was that he was homeschooled especially since his old school had a fire drill in the pouring rain that day. After one of the I love you’s to T1, I love you mom! Then he looked at me and said I used to say me too, but now I have my I love back!
That puddle on the floor is from my heart melting. No matter how difficult the transition to homeschooling has been, this has made it all worthwhile.
Bear, Meet Perry
It’s been a while, so I thought I would post an update on Bear. I can hardly believe it, but he is still around. Here’s what’s been happening.
About a month after I wrote about Bear, Grandma bought T1 a stuffed Perry the Platypus. Perry is great. He even makes his ‘gggggggggg’ sound when you press his foot.
Only there was one problem: T2 liked Perry too. No amount of saying “No, T2, Perry is T1’s” would dissuade her. If Perry was around, she had to have him. To keep them from fighting, Perry started spending time in the garage, constantly being placed in time out. It was unfair to T1, of course. Here he had this new toy and he could never have it.
Normally, I would have just kept trying to teach the lesson to T2 – she had to share. But she really, really, really wanted one. And beside Bear, she had never shown an interest in any type of cuddly toy. Or any type of toy for that matter. Not to mention, it was unfair to T1, who was very much trying to be brave about the whole thing.
We caved. Off to the Disney store for a second Perry, exactly the same. Then we wrote each child’s name on the tag. Problem solved! Plus a bit of a reward for T1, who had his patience recognized.
Only poor Bear. He was immediately tossed under a chair in the living room and left alone. Perry went everywhere. Once T2 learned how to make him talk, she was pushing his leg constantly.
T1 found Bear one day and gave him to T2. Look T2! It’s Bear! She picked him up and from that moment on, has had two constant companions. Bear and Perry go everywhere with T2. Except to bed. At night, they are unceremoniously thrown to the floor of her room and forgotten. The next morning, they are picked back up and loved anew.
Bear is getting that very-loved look. And Perry? Well, his sound maker broke only to suddenly come back with a vengeance. Now, if you so much as look at Perry, ‘gggggggggg’ – no foot pressing required. But that’s okay. They make her happy.
The Wagon
Scattered throughout our yard are vestiges of our life with two little children.
A worn-out turtle sprinkler
A now unused picnic bench
and The Wagon.
Only I don’t really have little children anymore. T1 and T2 are nine. T2 will likely forever be like a little child until she is made whole and complete in Heaven. But T1, well, he is in this strange, wonderful and often perplexing place. Caught between life as a little boy and life as a full-blown tween-type person.
If you would have asked me last month, I would have said The Wagon had given it’s all. The door doesn’t quite shut. The wheels don’t always face in the right direction and at least one of them is cracked in two. It has sat in our yard, dirty, used and forgotten for a long long time.
Until last week. Outside playing with D, both children have taken a renewed interested in The Wagon.
T2 will run circles around the house, pulling The Wagon. Sometimes it is empty, sometimes it is giving a thrill-a-minute ride to the turtle sprinkler.
T2 stops to have her picture taken.
T1 has pulled T2 around and around in it and she has returned the favor.
They have both even taken D for a ride around the house.
And yes, I have gotten involved in the fun as well.
But I have also taken these pictures because I know it won’t be too long before The Wagon is tossed aside for good. Pictures of a boy before he grows up too much. Pictures of a brother finding ways to play with his sister even if he doesn’t quite understand her.
Old Wagon, you days are numbered. But thank you for your last days, spent giving my children days of pure joy and fun.
Be Involved at School
Although they are the same age and in the same grade, T1 and T2 attend different schools. T1 goes to our base school; T2 goes to a school with a separate classroom suited to her needs. It takes me exactly 12 minutes door-to-door to get from one school to the other. I know this because I frequently drive between the two as an active volunteer at both schools.
Last year, there was an interesting discussion on an e-mail list I subscribe to. Someone had forwarded an article on why “parents like us” don’t volunteer at school. Basically it was a list of reasons why “we” are too busy, too frazzled, too occupied with our other children to make the time to get involved. Reading all of the enthusiastic replies of whole-hearted agreement, I felt like the only parent who thought differently.
I won’t argue that parenting a child with disabilities takes a lot of time; balancing their extra therapies, everyone’s homework, the rest of the families needs, all eat away on the limited hours in the day. All of the extra effort takes a physical and mental toll on the parents. However, is well documented that it makes a positive difference to be involved with your child’s school. To me, this applies just as much, if not more, to the child with special needs. Here’s why.
The Whole School Benefits:
The more you work to make the school a better place for all students and staff, the more you improve the school for your child. Supporting the school can be as much as a regular shift in the Media Center or Copy Center, volunteering at Carnival and other events or as little as simply taking the time to call the district offices when there is, say, a leaking ceiling or broken air conditioner.
You Can See The School Up Close and Personal:
At T1’s school, I am widely known as “Mrs. C”. At T2’s school, I am widely known as “T2’s mom”. Yes, I can walk down the hall and hear the choruses of Hi, T2’s Mom. If I am walking with T2, children will call out to her and wave.
I had always known that T2’s school is very inclusive but nothing compares to seeing it firsthand. Her classmates have had standing appearances on the morning news program, have been in the school plays and routinely go on field trips with the regular education classes. Each spring, on Special Olympics day, every single person in the school lines the hallways and cheers them on as they leave. It’s impossible to not get teary-eyed when you see that.
If you think your school could improve how they include your child, knowing what they do well or not so well will help you plan your approach. There is no better way to see what is going on than to be in the school.
Build Relationships:
Because I am T2’s school so much, I know most of the staff and they know who my daughter is. If I see someone new, I introduce myself and tell them who T2’s teacher is. I volunteer in regular education classrooms, working with students who need extra help and support. If it is possible for me to help, I do.
I do this because of my personal belief in volunteering at the schools. But the time has spent has had unexpectedly nice rewards – like the time I had to bring T2 to an IEP meeting before school, only to have a fourth grade teacher stop me and ask if she could watch T2 for me, rather than have to take her to the meeting.
Because I have taken the time to know and support the administration and staff at her school on an ongoing basis, her IEP meetings are more cohesive and focused. Everyone personally knows the child being discussed and they understand what is important to me and to her.
Improved Communication:
If you want to know more about what your child is experiencing at school, nothing beats being there and seeing for yourself. Having lunch with T2 gives her teachers and me a chance to catch up on all of the little things going on with her and the class. What I learn goes well beyond her daily notebook. T2 is non-verbal and has no functional speech substitutes, so I literally have no idea about the details of her day unless her teachers tell me. Getting to hear these details away from the rush of afternoon carpool is priceless.
Note:
I will freely admit that as a SAHM, I have control over my schedule and have the time to volunteer as much or as little as I like. However, my philosophy is whether you have 1 hour or 100 – there is some way for you to be involved. Read the school newsletter and subscribe to their e-mail list. Easy, one-off or at-home volunteer requests often come home that way. If you still can’t find anything, e-mail the PTA president and ask what you can do to help.
You won’t be sorry that you invested the time. And your child will reap the benefits.
Living in Crisis, Part 3
This is the final installment of my series Living in Crisis. The series details some lessons I’ve learned during this summer and living with T2′s behavior crisis. You can read Part 1 here and Part 2 here.
Over the past two weeks, I introduced our “summer of crisis” and gave some tips on how the parents can support the family, each other and the affected child during a behavior crisis. Today, I am providing some tips on how to support the sibling(s) of the child in crisis.
Supporting The Other Sibling(s)
Acknowledge
We had to openly acknowledge and discuss with T1 what was happening with T2. While we do expect him to generally ignore T2’s bad behavior, what was happening went well beyond her normal issues. We also had to let him know that it was okay to have a wide variety of emotions – it was okay to be scared, frustrated, irritated and even embarrassed by the screaming.
Clear Expectations
While we did acknowledge his feelings, we also let him know that the normal expectations of his behavior were not changing. He did not need to make derogatory comments about his sister or about what was going on at any given minute. He was still expected to be kind and practice self-control. Being frustrated – okay – being mean – not okay! We are still working on this, but at least having the expectations in place has given us a reference point for him.
Let Them Have Fun
Even when it’s hard, or you are tired, or you just don’t want to, try to keep the other sibling’s life as normal and fun as possible.
T2’s breakdown this summer started while we were at a big July 4th Friday. Trying to manage her while she was screaming and hitting and refusing to do anything, in front of 100 people no less, was, I admit, more than a little embarrassing. When we finally got her to leave, it felt like every eye was on us as we walked back to the car. (Since this was her first major problem this summer, we hadn’t yet instituted the two-car policy).
Once home, T1 really, really wanted to go back. They had a giant water slide there. And hushpuppies. T1 just loves hushpuppies. I really, really wanted to stay home – I absolutely did not want to face all of those people, many of whom I knew, again. Maybe never again if it would have been possible. Instead, I took a deep breath, resolved to sit in a quiet corner by myself, and took T1 back to the party. Where he had a great time, making any discomfort of mine completely irrelevant.
Just Be There
Make the time to be there for the other sibling(s). When T2 was at her worst, I would sit with T1 and try to let him know everything was okay. If at all possible, we left the house to get away from it.
Listen
Be alert for opportunities to talk with your other child(ren). Often these will sneak up on you without warning. If your children are like T1, there are a lot of questions and confusing thoughts happening inside their minds.
I remember vividly taking T1 to the pool one day. Instead of jumping right in, he wanted to sit with me for a while. We ended up having a long talk about their adoptions and our family. The questions he asked were amazing and what I learned about how he thought about it all and T2 was priceless. Another day while cleaning the kitchen, we were able to start the conversation about what their futures will be like. Because I had made it a point to be more available to him during this summer, we were able to have these conversations. Without that focus, I may have missed important opportunities to answer his questions and reassure him about his role in his sister’s life.
Aftermath
We are far from perfect here, so I know we didn’t always follow all of the above. But I hope next time we go through a T2 Crisis, I will be better at applying some of my own advice, especially since I’ve taken the time to write it down.
I am sure there are many more ways to get through a crisis with your child. If you have any good tips, please leave a comment. I would love to know what works for you.
