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How to Support a Family During a Pediatric Mental Health Crisis

March 20, 2013 in Featured, From Julia by Julia Roberts

In light of the recent Ricki Lake Show putting focus on pediatric mental illness and community member and contributor Chris Hickey and her son Tim, we’re re-running this post about helping a family during a mental health crisis. This originally ran Auguest 29, 2012. Thank you Chrisa and Tim for sharing your family’s story. We’re so grateful.

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When a friend contacted me about a child in her daughter’s class who was admitted into a psychiatric hospital for attempted suicide I was grateful. She’d wanted to know how to support the family, deal with the rumors swirling and how to communicate with her child about her classmate.

Like I said, I was grateful. I was grateful for the chance to share what we’ve learned. I was thinking “wouldn’t it have been great if all parents had done that in my son’s class when he was admitted.” Instead, I was asked not to blog about the situation, because the school was, apparently, getting push back (about my son attending the school or being in that class) from some parents in my son’s class. I took a few days off of the blog and came back with more resolve to tell our story - our way - as my friend Lori so lovingly (forcefully) told me to do in an email that horrendous week.

It is not complicated, this thing we call support. It’s the same support we need through medical crisis but because of the stigma surrounding mental health, families are often left feeling alone and isolated.

  • Talk to Us. One thing that mental health crisis is, is isolating. We need for people to not be afraid to talk to us about mental health issues. Even if you don’t know what to say, call. It’s okay to say, “I don’t know what to say, but I’m thinking about you.” 
  • Talk Sensitively with Your Kids. We need you to be sensitive about what you say to your kids about our kids. Kids don’t start off hateful towards  kids with differences, a lot of times, they have help. It’d be great if you could just tell your kids everyone is different and we all have issues, and our families are doing the best we can to help our kids.
  • Have Your Kids Show Support. It’d be great if your kid could write a note to my kid. When my son was out he got two notes and they were from his best friend Laura.
  • Offer Help. We need playdates and/or babysitting for our other kids. They need rides to and from school and activities. If our kids share an activity, it’s easy.
  • Food. Not much because we barely want to eat anyway, but you’d be surprised the amount of comfort that comes from a basket of homemade muffins left at the door.
  • Surprise us with Notes. We need notes and cards and emails of support.
  • Good Wishes or Prayers. Some of us need prayers, all of us need good thoughts and wishes. Then tell us by email, text or phone calls.
  • Stop the Gossip. We need for you not to gossip about our kids. If you have a question, call us. Most parents I know who have dealt with trauma like this will answer your questions and welcome the chance to talk about it with someone offering compassion and understanding.
  • Reach Out Through Channels. If you want to do something and are unsure how to support the family because you are not close, go through the school. Ask the teacher, administrator. Legally, they can’t tell you anything, but you can request they send a message to the family from you.

It’s really about common sense. How would you treat a family who has a child out for a kidney transplant? Or out for a extended time for a chronic illness? If you’d send emails and bring food and set up a schedule to babysit, then do it for this crisis as well.

You’d be surprised at the lack of compassion for a family who simply has a child who suffers from a mental illness resulting in an emotional breakdown. In our case, you’d be surprised about the lack of compassion for our family when our son wanted to kill himself.

Questions about how to support a family with a mental health crisis? Ask me. There is no stupid question if you are coming to it from a loving, compassionate place.

Gah! No, Seriously – Gah!

September 5, 2012 in Featured by Chrisa Hickey

As I drove in the car with Tim yesterday, my mind wandered to contemplating what crazy-fueled car behavior of his irritates me more – the times he chatters incessantly, or the times  he sits catatonic, mouth agape, staring into nothingness for the entire drive.  Yesterday I was treated to four solid hours of fly catching and breathing that sounded either like Darth Vader with a sinus problem or the snores of someone suffering from sleep apnea.  I’ve asked doctors before if that hideous sound is the result of dystonia and I’ve been assured it’s not.  I started to wonder, as it grated on my last nerve, if I need to have the psychiatrist drive him around for an hour and then give me his opinion again.

If it was just the outer space sound effects that might be one thing, but they were accompanied by the worst of the ‘clinical modifier’ to describe Tim’s particular type of schizophrenia,  namely, catatonia.  Sure, it looks like he’s staring off into the distance, but poking him in the arm didn’t break his gaze for a second.  Even my code phrase to alert him to times he is performing his nasal / glottal symphony, “what’s up, Darth Vader,” did nothing to change his demeanor.  Tim does this, nearly every day, sometimes for minutes, sometimes for hours.  He’s gone as long as two days completely locked up in his head, limp as a noodle, oblivious to the outside world.  When he was younger I often thought he was faking it to get out of having to listen to me / his father / teachers / peers / doctors / whomever until I saw it over an extended period of time that ended in a hospitalization.  Sometimes I still wonder if he turns it on when he’s tired or doesn’t want to have to try and interact. In any event, yesterday’s drive was a full-on spaced out encounter, however you want to slice it.  And I decided, it annoys me the most.

I want to be a perfect parent and be content with the fact that these are just symptoms of his illness and move on, but let’s face it, I’m far from perfect. After 90 minutes of space invaders I wanted to yank the car over to the side of the road and run screaming down the shoulder.  Sorry, Harry and Lloyd, you’re wrong about what is the most annoying sound in the world. Tim’s snarfle is the proverbial fingers on the chalkboard to me.  I swear one of these days I’m going to record it so the CIA can use it to terrorize foreign dictators into surrendering.  Until then, I’ll have to continue turning up the radio and pretending I can deal.  Let me know when David Patraeus calls.

Turn And Face The Strain

May 3, 2012 in Featured, Featured Member by Chrisa Hickey

Changes

There are plenty of quizzes on the interwebs that illustrate the stress that change can cause. Even the most well-adjusted person can be jarred by enough upheaval. Even happy events cause stress. I changed jobs recently. And while I’m thrilled to be with a company where I have more opportunity and a better culture, I’ve spent the last week coming home exhausted from the stress of learning a new company and a new set of teammates. Since I often deal with stress though sleep (my husband calls me a stress narcoleptic), it’s made for some early bed times.

In the middle of my job change, we’re also dealing with having to throw Tim’s world into a tizzy. The residential treatment facility he’s called home for the past two plus years doesn’t have room for him in their 18 and over group home, and he turns 18 this July. He’s in a good place in his life right now. He’s more stable than he’s ever been. He has a part time job, school, sports, and staff that he’s bonded with. It irritates me that an arbitrary date will make what is a great placement for him unavailable. As good as he’s doing, this change will, very possibly, derail the hard work he’s done to learn to cope with his symptoms.
When Tim was home for a 10-day visit over Spring Break, we sat as a family and discussed what to do when July comes around. We have a few options. We can find another RTC that has a program comparable to the one he’s in now, but accepts residents over 18. Or, Tim could come home to stay, and we could find services for him in our community, and rely on the school district for vocational services. Both are plausible options, but have different implications for our family.  I was surprised to hear Tim’s thoughts. He isn’t sure he is ready to come home. He spoke, very rationally, about how far he’s come in the past 6-8 months, and enjoying learning to be independent. So we are looking for both – researching community based services, and touring residential programs.  Next week we decide. Either way, even though we will make a decision we are all happy about, it’s going to be a rough summer.
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Special Needs & Isolating in a Crowded Place

May 2, 2012 in Featured, From Julia by Julia Roberts

Sunday my daughter had the chance to participate — as part of a signing choir — in performing the National Anthem at an Atlanta Braves game on Sunday. She did terrific and it was a joy to see her do well.

We had to get there unusually early – 12noon for a 1:35 game – so imagine my concern knowing my son wanted to go but then I immediately wondered how he would do for the day knowing we had leave the house 11:00 that morning. I immediately tried to figure out an exit strategy for when I was there at the stadium. She should be able to stay, I thought to myself but as is true with a lot of families with special needs, a sibling often has to give a little (and a lot) into what is best for their sibling, and that is especially true in public places and doubly true in croweded public places for her brother.

By the time she was done performing and getting to the general admission seats changed in clothing appropriate for hot weather (the signing choir uniform is long sleeve black shirt, black pants) he was ready to go. This did not surprise me. Luckily a friend came to the game and was willing to leave around the 3rd inning to take him with her (what can I say, I have great friends) so my daughter could stay and enjoy more of the game.

Until then my son couldn’t be persuaded into watching the game. So it was, as many times before, my duty to keep him from wandering (his phone wasn’t working) and keep him safe from climbing and exploring crevices (which is his thing). While I was doing this on Sunday, it dawned on me that I spend a fair amount of time doing this exact thing:

This is how I "watched" the baseball game on Sunday

We found a spot in the walkway to the seats, tucked away under a beam. He played on my phone after he was done climbing on the beam above my head and I snapped this picture. A hundred (or more) people passed by us and gave us that puzzled look. You know the one; the one that has them wondering what he did to get in trouble to be sitting out of the game. Or it’s the one that looks at me, back at him, then back at me and tries to figure out exactly what is the problem. We leave them confused most days and that’s okay by me.

It didn’t bother me, really. In the past he has done so much worse there wasn’t even an option for us to stay or even go out like this, if I’m honest. We used to spend a lot of time not doing things as a family that him isolating in the middle of doing something seems like a small price to pay for him to actually attend an event with family.

It’s one of those things You Never Think You’d Do but then you have a kid (or more) that just don’t do things like other people and you adjust. Tomorrow’s adjustment will probably change to Another Thing I Never Thought I’d Do.

We just make it up as we go along and Do Things We Never Thought We’d Do. Because that’s what I do. That’s true for you too, right?

 

Empathy, Special Needs and @whymommy

February 8, 2012 in Featured, From Julia by Julia Roberts

Just over two years ago my son had a mental breakdown and we had to commit him to a psychiatric hospital for inpatient treatment. He had debilitating depression and he wanted to kill himself. He was a mess. In the years before that he was fighting for his life through kidney failure, dialysis, and finally recovery from that and a kidney transplant.

During that time there wasn’t much space in his head for thinking about anyone else. His head was down and he was either expending his energy on surviving or trying to shut out the pain. There was absolutely no energy for compassion or empathy.

He is leap years ahead of his peers in life experience but he has been working on all of the other areas so over the last two years he’s made remarkable progress in catching up with his peers, socially and emotionally.

A couple of days ago, a woman name Susan died. She was a popular blogger, wicked smart, incredibly giving, and unusually sunny. She was particularly supportive of us sharing our family’s story of pediatric mental illness and she reached out to me many times over the last couple of years. When I read about her passing my son was in the room and I gasped and started to cry. He asked why I was crying and I told him and he asked more questions about her and her family. He was quiet.

When I picked him up from (his religious) school yesterday he told me that he asked the school to pray for her and her family and especially her sons, because he was “sure they were sad.” He told me he said she was a friend of mine from blogging. He was doing it for her boys, for sure but he also knew I would find comfort in his gesture.

It was such a tangible show of empathy from him that it nearly took my breath away.

It is possible that he has healed enough in his own journey to think about others in a way that we’ve not seen in a very long time, if ever, really. Susan’s reach was far; you need only google her name/s or look on any social media channel and you will see her life represented from the thousands of people she touched.

I know personally her reach was far because somehow she reached my son and she never met him.

The Journey to Residential Treatment: Part 2

January 18, 2012 in Community Wisdom, Featured, Featured Member by Lena Herrington

In a previous post, I wrote about our decision to place our son in residential treatment (RTC). The decision was one of the most difficult I can imagine having to make. Making the choice to send my little boy to a place with other children who have psychiatric and behavioral needs, a place where there are adults who may or may not treat him the way he deserves to be treated, a place where he is not their child and therefore, they will not be as invested in his well-being as we, his parents, are. What would he learn? What would he be exposed to? What behaviors would he pick up and bring home? I was, quite honestly, terrified.

When looking for a Residential Treatment Center, we had a lot to consider. First and foremost, we had to determine the funding. Since D had always been completely successful in the regular classroom, he did not have an IEP (individualized education plan for students with special needs). Without an IEP, the school system would not be willing to help us financially with this placement. We did not have open mental health or children’s protective services files, so both of those options were also eliminated. We certainly did not have the money to fund this type of treatment ourselves, nor were we in a position to take out a loan. We had private insurance, but due to D’s high level of needs we had to remove him from private insurance to place him on our state insurance for children. We were completely dependent on what the state health insurance for children would pay for.

With the state insurance paying, we were required to stay in state or in a facility within a limited number of miles from the state line. The facilities that we could consider had to accept the insurance and had to be approved by the insurance.

We also had to have the insurance approve D’s medical need for this level of care. In our state, there are several levels of care in the continuum. The other levels of care include therapeutic foster care and group homes at two separate levels of care. We chose to bypass those levels of care, against the wishes of the insurance company. Due to his need for more intense structure and therapy, medical management, and frankly, because he is adopted, we were adamant that he go directly to a locked RTC. We did not want him to misunderstand and think we were placing him with another family because we did not want him. We are his family and we wanted him to be secure in that.

We started with at least a dozen options, but narrowed down to only a few that could meet his needs. There are many different models of RTCs. These includes medical models that deal mainly with diagnosis and medication stabilization. There are also behavioral modification models, facilities that treat individuals with dual diagnosis (substance abuse and mental health or drug and alcohol abuse), relationship model that uses relationships between the patient and peers or staff members to modify behaviors, family models, religious based models, and others.

We immediately eliminated a facility that had a strong religious foundation. While we are Christians, we felt they used God  more as a punishment than teaching that He is a loving, compassionate God. We did not think it was fair to allow D to be subjected to yet another punishment from God. We felt he needed to know God in the way that our family does.

We were left with three facilities. One of those facilities we visited. The grounds were beautiful, the buildings were well maintained, and the program itself was remarkable. We could really see D doing well there. They helped students to learn to accept responsibility through their equestrian program, they had a psychiatrist on staff, they also had their own step down programs. Those programs provide a placement for students who no longer need the locked RTC, but still need the intense structure. Unfortunately, they denied D. They felt they were unable to meet his needs due to his sensory processing disorder (SPD) and autism spectrum disorder (ASD).

Another facility we visited looked great on their website and on paper, but was quite different when we toured. There was broken furniture on the recess patio and in the bedroom that I was shown. There were expletives written on the walls,  and overall, the facilities were dirty and not well kept. These raised red flags quickly. When I visited the classrooms, they had the students divided by states. The state that the facility was in had their students in one classroom participating in academics. The students from the state we lived in, on the other hand, were packed into a classroom with one adult and watching tv. They were very open about the fact that the students from our state were segregated for the purpose of academics because they did not know how to teach them. I walked away from the visit in tears, picked up my phone, and called our team leader to let her know we could not accept this facility.

Last but not least, we were told in the same phone call that a facility in the state north of where we lived had accepted D and we were welcome to come visit. Based on the website, we were not convinced, but we set the appointment and headed that direction. From the minute we walked in, I had a completely different feel. The staff was very well educated, the person we talked with was knowledgeable of the program and they were willing to answer any questions. From there, we went on our tour. The facilities were clean, the students were all working in the classroom. The staff member working with a student who was having a difficult time was soft spoken and working to help the student de-escalate.

This was the program for D! 

After reviewing many programs and visiting a few, I was relieved to know that D would be going to this facility. I was still terrified of the care he would truly get, the things he would learn, and the things he would be exposed to, but I was still relieved. We were moving forward with a plan.

I am including some resources that might be helpful when researching RTCs for your child.

Resources:

Federal Trade Commission: Questions to Ask - http://www.ftc.gov/bcp/edu/pubs/consumer/products/pro27.shtm

National Alliance on Mental Illness - http://www.nami.org/ (find your local NAMI office for resources available in your area)

National Association of Private Special Education Centers - http://www.napsec.org/

The Balanced Mind Foundation - http://www.thebalancedmind.org/ (offers online support groups for a variety of interests, including RTCs)

Additional resources can be found through your local mental health center, your child’s mental health team, and if your child receives special education services, you might also find assistance from the school district. There are many other resources available through internet searches.

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Editor’s note: I encourage you to get to know Lena through the site in the groups and through her blog and Twitter. She is an amazing advocate and a good friend…even to those she met on the Internet. Lena’s blog is http://luvmycrzylife.blogspot.com and twitter is @luvmycrzylife" href="http://www.twitter.com/luvmycrzylife" target="_blank">@luvmycrzylife

 

Just A Belly Rub

January 9, 2012 in Featured by Chrisa Hickey

If you’ve ever read my personal blog, you may know that, along with three children, I have four dogs.  We didn’t plan on having four. It sort of happened by accident.  They are all dogs that someone else had mistreated or didn’t want, collected over the past decade from three different states and at separate times.  They are all different sizes, different breeds, different ages, and different temperaments.  Rosie, our oldest, was easy to train. Lola was difficult, but once she got it, she has been very obedient. Chloe is 70 pounds of big goofball, and Sydney, the youngest and the smallest, is stubborn as nails.  She reminds me a lot of Tim.  She likes affection, but only on her terms, when she is ready for it.  If you discipline her in a manner she feels is unfair, even if it’s not, she gets sneaky and destructive. She can spend days wanting to be near you, then just as many treating you as if you don’t exist.  Strange people and places give her amazing levels of anxiety. But above all of this, she is the cutest little bundle of hair you’ve ever seen, and, what’s worse, she knows it.

 

Sydney. Cute and she knows it.

Common wisdom says when you are choosing a puppy you should put it on its back.  If the puppy stays on its back and doesn’t fight to turn itself over onto its feet, it is more likely to be friendly and easy to train.  Sydney hated being on her back, even for a second.  She hates it to this day.  Every once in a while I try to cradle her in my arms on her back while rubbing her belly, and she fights and struggles relentlessly until I set her free.  She will allow no one to put her into this submissive position.  No one  – except Tim.

Tim has been in residential treatment for over two years.  But even so, Sydney can go weeks, sometimes months at a time without seeing him, and the minute he walks in to the house she runs to him.  She begs him to pick her up, and she flips right on to her back so he can rub her belly, lulling her to sleep.  And it’s not just her initial greeting.  Any time he wants, on demand, he can summon Sydney to his lap, flip her, and cradle her face up like an infant.  Over Christmas weekend he got her to voluntarily climb into his lap and she slept, on her back, in his arms, four times.  For a teenager that has a difficult time communicating with anyone, and a dog that chooses to rarely interact with anyone, they are amazingly attuned to each other.  Friends and family have commented on how amazing it is Tim can train her,  and what a kind and gentle soul he must have to have her trust.

Those comments make me realize that Tim’s difficulties communicating with peers and adults has as much to do with the peer/adult as it does with him.  He can convey comfort and affection to Sydney without saying a word.  She sees through his seemingly flat emotions – a symptom of the Schizophrenia – and hears the soft inflection in his voice as he calls her. She notices his upturned hands, making himself vulnerable to her, rather than dominating by snatching her off the floor.  He moves towards her slowly and when he cradles her, he makes her a nest, rather than forcing her into position.  Sydney sees the real Tim, not the constant-hoodie-wearing, unemotional, uncommunicative teenager with a mental illness that most people see.   When Tim eventually comes home from residential – or even if he moves to a supported housing situation after he turns 18 – I think Sydney may have to accompany him as his therapy dog.  Because from Sydney, he receives no-pressure, unconditional love.  And through Sydney, the world begins to see the real Tim.

Growing Into It

December 12, 2011 in Community Wisdom, Featured by Chrisa Hickey

Tim moving in to his room in the RTC

Two years, three months, and 11 days ago, we sent our son away.

We didn’t want to, and we did.  It had been 11 years since Tim’s first diagnosis.  Over those years there were 12 hospitalizations, 27 different med combinations, seven therapeutic day schools, one suicide attempt, six broken doors, nine different doctors, and a partridge in a pear tree.  We couldn’t get Tim stable at home, and the mental health of everyone else in the house was deteriorating.  We couldn’t take anymore, but I didn’t know how I’d live without him.  The glimpses of Stable Tim were priceless treasures of goofy humor, deep affection, and boundless compassion.  But those glimpses had become so few and far between that I feared that if we didn’t take this drastic step, I might never see them again.  He had just turned 15 years old.

When we made this choice it was a family decision.  Tim wanted to get his illness under control as much as we did, but he also said  he wanted to learn how to be independent from me and Tom.  He had literally never spent one moment, outside of school, without either me or Tom since he was seven.  It started because we couldn’t trust what he would do or what mood he would be in from one moment to the next, but eventually, Tim didn’t trust himself either.  He clung to us, even when psychotic, hallucinating voices that called us evil, screaming what they preached inside his head while pounding his fists on walls, furniture, even us.  So two years, three months, and 11 days ago, we checked him in to a long-term residential treatment facility, 120 miles from our home.

By and large, it’s working.  Tim has had more periods of stability over the past 10  months than he had the eight years previous.  He is becoming a skilled self-advocate, identifying his own symptoms and discussing treatment options and medication changes with his doctor on his own.  Puberty and stubborn psychosis still rears their ugly twin heads, causing waves of hypomania and depression that ebb and flow in sync with the changes of light and season.  We visit him at least one weekend a month and he comes home for overnight visits several times a year.  He’s learning not only how to live with this condition, but how to be an adult.  He attends school, has a part time job, and is responsible for his laundry, chores around his group home, and plays competitive basketball and track.

This morning, Tim called me before school.  I could hear he was pacing and breathing heavily.  He spoke loudly and rapidly, gulping air in between sentences, making the next words louder than the ones just before.  It took me a few minutes to understand the problem.  He’d had a disagreement with one of his housemates, and he was pacing and yelling and calling me in an attempt to avoid a full-blown rage of his own.  Over the next ten minutes I coaxed him to use his breathing techniques to calm him, and got him to stop talking until he was calm and no longer pacing.  Either Tom or I get several calls like this every month.  Several weeks ago the call was so desperate in the middle of a Thursday that I left work and drove the four hours round trip to hold his hand and sit with him until the agitation and anxiety passed.  Even with the army of therapists and social workers and psychiatric aides that interact with Tim every day, the tether between him and us is still very much intact.  When he first went away, I think he thought – and we assumed – that him learning independence from us meant he had to learn to live without us.  But today, two years, three months, and 11 days after he went away, he and I both know that growing up does not mean growing apart.  I will always know my child better than any specialist, and he will always rely on me to smooth out the rough edges.

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Editor’s note: If you’re on Twitter, I encourage you to follow her to get and give support. She amazingly real. You can find Chrisa here or her blog The Mindstorm: Raising a Mentally Ill Child. Please welcome her as a monthly contributor to our site, with her focus being pediatric mental illness.

I’m Only Mama

November 22, 2011 in Community Wisdom, Featured Member by Lena Herrington

As his parents, when D was experiencing extreme rage and aggression, we had to make some very difficult choices. He had been in the hospital several times in a 2 month period and nothing was changing. With D’s mental health team, we decided to place him in a Residential Treatment Center (RTC). Since he had always been well behaved in school and did not have an IEP, we chose not to involve them.

At the beginning of this school year, upon his return from RTC, we began the evaluation process for special education. Before the process began, school system representatives were predetermining that he should be in a self-contained classroom for students with emotional disabilities away from his home-based school. I stood, rallying against the forces, for him to be allowed to stay in the regular classroom. I felt it was unfair for us to pull him from his happy place. 

Once the evaluation process was complete, the IEP team agreed that the regular classroom was an appropriate placement. However, he was exhibiting extreme school anxiety and school refusal. We were only successful in getting him to school 1-2 days a week, the other days we had intense battles. Many of the mornings he would hide under his bed or under the seats of the van, crying, begging to stay home, screaming that he just can’t go. The entire situation was traumatic to us (his parents) and his siblings, but mostly it was traumatic for D. I spent hours scouring the internet for ideas to get him to school. When those ideas did not work, I began spending hours investigating online academies and options for homeschooling him. I was essentially biding my time until the evaluation was complete, the team met in order to determine his eligibility for special education, and the IEP was written. I wanted to give the school system a chance to help us meet his needs.

The principal and his teachers had several great ideas. His teachers bought Star Wars books, of his choice, for him to read in the classroom. The principal, in an attempt to make mornings appealing, reserved one of the e-readers and downloaded Star Wars books for him in the library. She also made arrangements with the PE teacher for him to shoot basketball or other physical activity if he chose not to read in the library. She even bought an awesome Darth Vader mask that he could earn by coming to school 15 days.

Unfortunately, even the best incentives can not override intense school anxiety on a long term basis. The absences continued, the anxiety intensified, and the days that we were able to coerce him he was beginning to show anxiety induced inappropriate behaviors. 

It was unnerving when our phone rang at 8pm on a Sunday night. The principal identified herself, apologized for calling so late on a Sunday night, and explained that she was calling to set up a meeting. We, as a team, needed to come back together and brainstorm some ideas to get D to school. We decided to meet later in the week, and my mind went crazy. With previous news from D’s counselor that the school system was trying to find someone to sign a medical homebound release form, my own anxiety was taking over. While I have been considering homeschool, I wanted to do it on my terms, not theirs.

When the IEP team came together, we wrote a beautiful plan for D. We took away some of the choices he had available to him. Choices, like many students with Autism Spectrum Disorders, cause him intense anxiety. We created a time early in the morning for a social story to plan his school day, and a time in the afternoon to decompress and attend to any problems that may have come up during the day. He has an early morning, school routine that should alleviate some of the anxiety that comes from sitting in the hall with other students before class. We agreed to implement a picture schedule. He is an excellent reader, but when his anxiety is high he is unable to focus on the meaning of the words in a written schedule. We also decided to implement a system to help him self monitor his anxiety. Overall, this plan should be perfect, minus one small problem…

A great plan does not create a magical transformation in a student with extreme anxiety.

Our first morning since the IEP meeting we had one of the biggest battles we have had this year. He was embarrassed because of something that happened the previous school morning. We were not successful in getting him to school, we were successful in raising his anxiety level to a point from which he could not return.

Clearly the regular classroom without support was not the proper educational placement for him. He is doing great academically, but at this point, he has not been socially successful. His social failure has intensified his anxiety, making it less likely for him to be socially successful. Hindsight being 20/20, I wish we had chosen to homeschool or use an online academy when he first returned from RTC.

What is the answer? Where is the right educational placement for him?

I’m only his Mama, I don’t know.

What I do know, is that I will continue to advocate for D until we help him reach success — academic and social.

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*Note: This post is an update to The Loaded Question: Least Restrictive Environment?

About Lena Herrington

With the help of a wonderful husband, I am raising 4 wonderful kids. D (9) has High Functioning Autism, SPD, & possible mood disorder (though this is being ruled out by his pdoc). He is transitioning home from a residential treatment center where he spent 4.5 months receiving intense therapy. Spike (4) has a speech articulation delay and PTSD from dealing with her brother’s reactive/aggressive behaviors. Pouty (3) has seizure disorder, possible PTSD, and will rule the world with her determination. Samoo (18m) is the cuddliest, sweetest baby with amazing ability to understand language, but severely delayed expressive language. He is quite possibly the most comical, expressive kid I have, even without his words. My M.A.Ed in Special Education may not have taken me back into the classroom, but it sure helps me to “Embrace the Crazy” at home!

Lena’s blog is http://luvmycrzylife.blogspot.com and twitter is @luvmycrzylife" href="http://www.twitter.com/luvmycrzylife" target="_blank">@luvmycrzylife

Welcome to New Members

March 11, 2011 in Around the Site, Featured by Admin Dawn

Gail Curran: Gail works at the Arizona Centers for Comprehensive Education and Life-Skills. Are you in Arizona? Look Gail up!

Achieve Beyond: Achieve Beyond specializes in nationwide pediatric therapy and autism services for children ages 5 and under including states like California, Illinois, New York, Virginia and Conencticut. Achieve Beyond uses a family focused approach in providing early intervention speech therapy, occupational therapy, physical therapy, ABA/autism therapy and psychological counseling. We strive to serve our patients and their families by providing services and evaluations support in their predominant language, at both the home and community settings. We also offer private pay / insurance services, educational workshops for parents and therapists as well as translation / interpretation services at several of our branches.

Denise Moberg: Retired from 30 years as an SLP in the public schools. Currently have a part time private practice.

Kyra: I am a stay at home mother of 4 kids. 2 are Special Needs. My 7 yr old has ADHD, Auditory Processing Disorder, Sensory Modulation Disorder, and Dyspraxia (the last 3 are very new to us). My 2 yr old has Apraxia and Sensory Modulation Disorder. My other 2 kids are just in special need of special attention. I am on a leave of absence from school right now so that I can get a better handle on my family and concentrate more on them than me.

Julie Fick: I am a full time mom to my son who has DiGeorge Syndrome. We live in Woodstock, GA.

Alisa Ricketts: I have been married for almost 20 years and I am a SAHM of two teenagers, one of whom is a special needs child.

Patricia: I have a 7 yr old with odd severe, conduct disorder, ocd tendencies, generalized anxiety disorder, separation anxiety disorder severe

Ayoca Freeman: I have two beautiful daughters; their ages are 8 and l year old. My oldest was blessed with an extra chromosome better known as Trisomy 21, one of the types of Down syndrome.

Jennifer McMahan: Mom to 2 beautiful daughters. The youngest one has Dravet Syndrome. I am actively involved as a volunteer in the IDEA League, the only organization that provides advocacy, support, education and research for Dravet Syndrome. Their website is http://www.Idea-League.org. It is my goal to help raise money for research as well as educate the public on this very rare syndrome.

Amanda L.: Mommylebron is the slightly diabolical leader of Lefam (just don’t tell LeDaddy, he thinks he’s the leader, riiight). She is a snarky & sweet mom on a mission! Once she attains her goal of world domination she will educate all its poeple on pediatric mental illness and erradicate stigma. All while wearing a really cute apron. This domestic diva, kitchen queen, laundress extraordinaire also enjoys writing, reading, movies, scrap booking, word puzzles, kiddie cuddles, wet kisses, big brown eyes……Oh, and, during her “on time” she molds the only-slightly-less-diabolical-minds of 4 year old’s (aka preschool teacher).

Stephanie LeMieux: I have a boy with HFA and Tourette’s

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