Hope is Handy

Sometimes all you need is to get started. Often, that is the hardest part. And of course, hindsight is 20/20. We all know that. We are in the middle of our IEPs (individualized educational plan) and though I was super stressed about all the therapy we have had to schedule, the recent transition to preschool and potty training. The IEP was what I feared most. I studied our local education web sites, parenting web sites and anything I could get my hands on about two years ago. Then I decided I was not going to overeducate myself. I stopped reading everything. A bunch of time passed, during which my daughter developed her sensory and OCD issues more fully (yay), we fought with the regional center for speech and other necessary services. Now the IEP.

 

It was recommended that we create notebooks of info, medical summaries, etc., that would be helpful to the school district team in determining what our kids need. I ditched that idea. After I filled out the forms, surveys and questionnaires for two kids that felt like I was re-taking the SAT, I was wiped out. It took me three days to get through it all. Somehow, I didn’t feel like making a nice, handy little notebook next. What was supposed to be three meetings turned into nine meetings in two months. That’s a lot of calendar-ing, and I got more stressed about that with the therapy/school schedule we have. So what did I do? I joined a fitness boot camp for the month of November. I willingly got up before the kids were awake a few days a week and went to punish my body into health. When all was said and done, I had lost eight pounds and cared less about the meetings. Who knew a little self-focus could go so far?

 

To date we have three meetings remaining, and the school district folks have been amazing, kind, attentive and interested in all facets of our children. Perhaps we have a great school district. Perhaps distracting myself was the key. Perhaps it’s that I don’t have the time to dwell on my children’s issues as I might if I had one instead of three. I see that as a huge benefit to my kids. What I also see is that I MUST have balance. The same way the dinner dishes need to be cleared from the sink to prevent mold from growing. You can't just let it sit there. I need to clear my head and my heart in order to be mentally prepared for what my kids need. That is my first job. That means exercise, health, and most of all hope. I find that hope is more accessible when my head is clear. That’s a pretty handy tool. And I don’t need a notebook for it.

Read more about life with triplets here.

New school, New year, New hope, New fear

In three days, on September 13th, my son Jacob starts something like 3rd grade at a new special ed school.  This is his first school-age transition, and I have been ignoring what a big change it is going to be in our lives until now, when I am scrambling to wrap my brain around it and figure out how we are going to work out all the logistics of the to-ing and fro-ing and getting his twin brother to and from another school all at the same time.  When Jake was young, his pre-school changed annually, as he and his needs evolved so rapidly, including a huge bulk of home based learning and therapy, with me supervising and co-ordinating, learning to be what I called a “pre-school director for student body of one.” But for the past three years he has stayed put, so I have grown a bit complacent, a bit lazy, and that’s all about to go out the window.

Frankly, we should have made this transition sooner, his last school being adequate, but not really good enough for him for this last year. I had tried, but only half-heartedly because I was so caught up in the care of my dying 92-year-old father that it was impossible to throw myself fully behind anything as all encompassing as the search for a new school for Jacob. I am trying to set my guilt about this un-brilliant past year aside and move forward, but it’s a slog.

As it was, we nearly didn’t have a school for him for the coming year. This caused me a lot of “Momsomnia.”  And we just squeaked in under the wire with a late June admission to this school, which is somehow, improbably and through the goodness and grace of the universe, we think (we hope) just the right place for Jake at this time. There is so much wonderful about this school that I can’t even begin to scratch the surface in singing its praises. You know how when you walk into a special needs school, you instantly get “the vibe” and it is either “this place is right” or “this place is so wrong”?  Well, this was all the way right.  And it doesn’t have anything to do with how high tech or fancy it is, with the bells and whistles, it’s this ineffable quality that the school is about the kids, and the kids are a good mix with yours.

And all my hunches were confirmed when we got accepted.  The admissions director told me that after Jake’s school  visit the teachers wanted him to transfer right away to their classroom, they so loved having him there, and wished there wasn’t only one week left to the school year.  And then we got the loveliest acceptance letter in the history of acceptance letters. Because it was addressed to my son, not to us, his parents. Because he is the one going to that school and he is a person. (You can read the letter and what I wrote about it in my blog, here.)

And of course, it’s not perfect. There are uniforms involved, which will be a challenge for my son who has sensory issues, hates collars and buttons, and also has strong opinions about what he wants to wear on any given day. I am picturing it:

“I want a yellow shirt, mom” 
“No, honey, white again today for school, yellow at home and on weekends.”

After months of t-shirts and shorts, I was so grateful for a cool  day to start the transition. Today Jake wore pants. And hated every minute of it.

“I don’t LIKE pants, Mommy take them off!”
“No, Jake, it’s cool, you need pants.“

“Change my pants. I want RED pants.”
“No, Jake, you have to wear blue pants to school, we’re getting ready for school.”

“I don’t LIKE pants!”

All day. He doesn’t give up, he’s a scrapper. But better now with me, than at school with them. I figure in a week he’ll be resigned. I hope. 

Also, there will be work to make sure the academics are challenging enough, since he is closer to grade level than the other kids in his class. His reading is fairly fluent, his math skills only a bit delayed, while his classmates will be mostly struggling with all that.

So why is this school a good fit? Because he learns academics fairly easily, when they are broken down the right way for him and repeated enough, something I’m sure the school can do. Especially with a little help from the wonderful, private, 1 on 1 ABA teacher who works with Jake at home a few hours a week. We can’t really afford her, but we can’t afford to lose her either. She makes all the difference in our world, in his, so we will do without, to keep her.  She will spend time at the school with him, helping his new teachers to quickly learn about how my son learns and making sure they set the bar high enough for him, who can be sneaky and appear to be capable of less, if he thinks he can get away with it.

So the reason he is in this school: to make friends. Two years ago, my goals for Jacob were simple: to learn to read, and to have a friend. The first one has been met brilliantly, he is a reader.  The other one: woefully unmet, and this tortures my son every day. He wants friends, he needs friends, he is ready for friends, but first he needs to learn how to be a friend. He has bucket-loads of social desire coupled with a thimbleful of social skills. He is too loud, too close, too repetitive, too demanding, too much for most kids to take on.

His old school was an all autism classroom, and while that was what he needed when he was 5, it is no longer anything that he needs at 8.  When he goes up to classmates to talk to them, he needs those kids to turn towards him, to engage with him, not to turn away and ignore him.  He needs kids who can model social interactions for him, not just the teachers. 

At his new school, the students have a wide mix of special needs, and very few are on the autism spectrum.  The kids are sweet, the kids are kind, and most importantly they are socially interested in each other.  Their strengths and weaknesses will (hopefully) complement each other. He will help teach his classmates to read and do math, they will help him learn to be a friend (at least that's the plan.) It looks to be a win-win and I can’t wait. 

If I can just get him to school on time, and in uniform. In the heavy black shoes (“I don’t LIKE shoes!”) Miracles can happen, can’t they?


Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She is proud to be a Hopeful Parent.

One More School Year Down

My elementary school-aged kids finish the school year up tomorrow, which gives me reason to reflect on how this school year has gone for Jack, my autistic son. He will have just completed first grade, something that I wasn't sure he could do at this time last year.

I remember how hard kindergarten was for him. The transition to elementary school took the entire year. We started kindergarten with a phone call from the principal and an early pick up on the first day. We ended kindergarten with trepidation as to what laid ahead.

See, my oldest son is just one year ahead of Jack in school, so I was all too aware of what Jack was going to face in first grade. Weekly homework packets, long spelling words, and subtraction with borrowing awaited.

I hate to say it, but I didn't think he was going to make it. I think I may have uttered the words "sink like a rock" to my husband.

To my surprise, Jack stepped up. Yes, there were behavior issues and calls from the administrators, and don't even get me started on the homework hell we went through this year. But he hung in there. It turns out that even though he didn't like to do his homework, he loved practicing his spelling words. Even if he hated subtraction, he loved addition and counting coins. He might not have had appropriate behavior every day, but he did okay and he even made a new friend.

To see where Jack is today and where Jack was a year ago is to see a child who has made incredible strides. Age, time, and learning has helped him so much. He is growing into a very cool kid.

The really great thing about his success this year is that I can see his potential for success in the future. I see what my older child has done in second grade this year and I worry that Jack won't be able to handle it. But then I think to myself that I had these very same fears last year, and he did okay.

Now my challenge is to take that knowledge that Jack will continue to grow and rise to the occasion and turn it into heartfelt belief. Because have you seen what second graders have to do these days?

Jean writes about her life and family at Stimeyland. She runs an autism events website for Montgomery County, Maryland, at AutMont. In addition, she writes a column called Autism Unexpected for the Washington Times Communiities. You can follow her on Twitter as @Stimey.

Things are not always as they appear

Calvin is sitting across the table from me as I write today. He is having a Mom imposed day off from school because I felt as though he would not be able to keep it together and have a successful day if he went to school. Staying home means doing work in workbooks, it is not a free day but it is a day when he does not have to deal with bullying, frustrations, disappointments  and having his buttons pushed because others think that watching him explode is so much fun.

I have been warning his school all year that this would happen, that one day he would blow up and hurt another child. He needs structure, he needs adults to step in a help him when he is overwhelmed, he needs adults to see that it is going to happen and do something before it does. The staff at his school heard me but they were not listening. They did not believe me, they did not think that this little boy was capable of such things and because they refused to listen to me a child got hit with a chair on Friday.

They are listening now.

Sadly it is too little to late. Now that Calvin has raged at school he has nothing to lose, he has no reason to try to keep it together.  All  the other kids in the school will have a great time watching that kid with the short fuse blow his top when they tease him on the yard.  Kids can be mean, few kids understand what it is like to be different and even fewer know what it is like to be  in the situation my children are in.

The staff believe that he is in control when he blows, that he choosing to lose his temper. They do not realise that he reacting from a place of fear, a place that is deep within his memory that he not thinking about it but instead just trying to protect himself from the perceived threat. We all know that the other child who is teasing him is just doing it to see the show but Calvin doesn’t know that. It triggers a fight or flight reaction in him that is so deeply ingrained within his being that it is automatic.

He has this deeply ingrained reaction because at a very young age he learned that the only person he could depend on was himself, no one else could be trusted. Sometimes the big people in his world took care of him and sometimes they did not, sometimes the fed him, sometimes they comforted him and other times they just left him to cry. Left him to wonder why no one was meeting his needs, why his cries were unheard or ignored when he clearly needed something. His brain was affected by this neglect, his brain did not develop in the same way of that a child who is cared for and has their needs met lovingly.

Then other adults came into his world and moved him away, separated him from his sister and placed him a foster home and told him that he would be safe and taken care of here. He visited with his Mom sometimes and sometimes he went to visit and she did not show up reinforcing his belief that adults could not be trusted. He started to misbehave at school and in his foster home, he was punished and made to feel as though he was a bad boy. None of the adults in his world realised that his behaviour was speaking volumes about what had happened to him, he was telling them but they could not hear him because they did not really understand his language

This went on for 3 years before Calvin was told that he was going to be adopted and that there would be no more moving around. Calvin did not believe us when we told him we would love him forever, that we would always be there for him. Why should he believe us, adults are not to be trusted

Everyone told us he was a handful, he had a lot of behaviour issues, had been suspended numerous times, refused to use the bathroom, was overly affectionate and could not be trusted to be alone. We were not suprised by his behaviour, no wonder he acted like that, his life had been one traumatic event after another. By 8 years old this child had more trauma than many people have in a life time.  

We have worked really hard to teach Calvin that we will take care of him and meet his needs, that we will never leave him no matter what he does, that he can be angry and tell us that he hates us and that we will still love him.  He is starting to realise that we mean it, that as his parents we can be trusted. He does not trust us all the time, he is still working on that but he has come far in the last 18 months.

Even though he is starting to be able to stay regulated and in control at home it is hard for him to maintain that control when he is not with me. He uses me as his anchor, he knows that I will see when he is becoming disregulated and help him gain control by talking to him about what is going on. That is why school is so hard for him, there is no one to help keep him regulated because all the staff wait until the behaviour occurs rather than watching for the signs that the behaviour is coming.  Once he is disregulated he goes to that fear place in his memory and reacts from there, he does not stop to think, he just reacts because he is scared that no one will keep him safe and so he must keep himself safe at all costs.

This is attachment disorder, this is what happens when children are neglected and experience trauma. Calvin is not alone, there are many children who are just like Calvin.

I wish that the world understood attachment disorder. I wish that the world understood the profound effect that neglect that has on a child’s developing brain. I wish people would listen to those of us who have taken the time to learn about attachment disorder and choose to parent children who are affected by this preventable damage when we try to explain our children to them.

J. blogs at Stellar Parenting 101 where she talks about raising two wonderful boys and all the challenges that go along with being their mom.

Separation Anxiety

Today was my son E-Niner's second day of school. He had been removed from his former school, a therapeutic school, last year in June and it has taken us this long to find a placement for him.

(Long story including hospitalizations, adjusting meds, and testing. He has ADHD, SPD, anxiety, PDD-NOS, psychosis.)

Yesterday was great. Today was heartbreaking.

He woke up raging this morning after a fitful night's sleep. Around 10:30 last night, I took him into bed with me. This "bed" is an air mattress that I have set-up in the playroom so that we don't disturb my husband in the middle of the night.

After getting kicked and slapped around last night by the little boy who was sound asleep but somehow still very hyperactive, I decided to go back to my own bed. When E-Niner woke up this morning and I wasn't there, he had a conniption.

It continued the entire morning -- with a 20 minute break after I had given him a sedative -- until we got to school (which is 45 minutes away). So this was happening from the moment he woke up at 6:30AM until we arrived at school at 8:30AM. Two hours of screaming, kicking, throwing, biting, hitting. But like I said, at least there was a 20 minute reprieve in the car.

Once we got to school, I had to drop him off. Here I was giving my son to two people (his teacher and aid) who I have only met three times. I of course trusted them, but nevertheless broke down in tears once I drove away. When did my life come to this? When did it start to be okay to drop off my violent, aggressive son to almost strangers (granted, highly-qualified and trustworthy strangers)?

I knew he would be okay, but something about that very painful separation felt awful to me.

I stuck around the neighborhood, in case they wanted me to bring him home. About 10 minutes later, I got the call that once he walked into the classroom, everything was a-ok. He was settled and working on an activity.

Thank Goodness It's Friday!