Schools almost here!

Less than one week until school starts and panic has set in here. Kristin is totally freaked out about Middle School. As the time approaches to go back to school, she gets more and more upset, crying and looks of terror on her face when I suggest we go down to the school. I know going to middle school can be challenging, but it shouldn't be that big of an impact for her. The reason I say this is that she goes to a K-8 school. So she has been attending this school for the last two years, knows the school, has meet most of the teachers already and has tons of friends. It doesn't matter what I say though, she is freaked out.

I called the principle yesterday to talk to her about it and she was able to give me a general idea about who her teachers were going to be. The only teacher we weren't sure about was the core teacher and that was narrowed down to two. These are teachers who have been there for the past one to two years already and I believe she has already met them. The principle said she would also be willing to talk to Kristin too. I don't know if I should follow up on this or not.

I did get Kristin to read a couple of books put out by American Girl about feelings and about going to middle school. We talked about what she was afraid of and what she could do if those things were true. That seemed to help her to strategize different options. She was perkier after that.

As for Ian, we are still in a little bit of a quandary. He is supposed to go to a counseling enriched program run by the county as a student of his current school. However the county program is in a different school district. I've explained to the new school that he is not a student of theirs but is on their campus as part of the county program, and that he goes to a different school and is enrolled there. It's complicated. The staff looks at me like they don't understand, but the principle seems to. At least I hope so. The staff at his regular school keep asking if he is attending or not. I've told them in the meantime that he is still a student of theirs. Does this sound confusing?

So, why am I doing this? Well, Ian's school has a waiting list. If things don't work out at the new program, I want him to still have his original place. The teacher knows he may be there and even if he isn't, he has said we could bring him by to still participate in special activities and events. We also have to wait for the doctors to finish their assessments and tests. Their results may change everything. We don't know! I was hoping all this would be settled before school starts, but oh well. Just more waiting. You'd think I'd be used to this by now.

As for me, I'm taking classes at the local community college. Our classes started yesterday. I'm quite pleased and have been looking forward to them. I've had one class already and I think I'll enjoy it. It's called "Drugs and the brain". My other class is "Mental illness and the Movies" which starts today. I'm taking it from one of my favorite teachers. I know I'll enjoy that.

I'm actually off to attend a parent meeting about home schooling. We tossed the idea around for a few years now, but always end up deciding against it. It wouldn't hurt to attend the meeting, I might change my mind. That is Kristin's other option, to be home schooled, I just haven't decided if that would be best for her or not.


We are still trying to decide about Ian and his schooling. He is signed up for a counseling enriched program through the county, but it takes

In Honor of Mothers and Fathers of Bipolar Children

I received this newsletter from the Papolos' yesterday and I wanted to share it with you. It is in celebration of the mothers and fathers who deal with the bipolar illness that affects our children, but it is also a celebration of those mothers and fathers who deal with any children with a mental disorder. Mental illness is still taboo in our society and it shouldn't be. We need to throw off the covers of secrecy. Parents and their children need to know that they are not alone.

Here is a glimpse into our daily lives. Thank you Janice and Demitri Papolos!

The Bipolar Child Newsletter
May 2007, Vol. 24
Janice Papolos and Demitri F. Papolos, M.D.

In Honor of Mothers and Fathers of Bipolar Children

In our book, and in almost every newsletter we write, we talk constantly about the burdens that parents of children with bipolar disorder must shoulder and overcome, all the while attempting to make decisions with the clinicians who work in an area of medicine that is still in its infancy.

But we've never composed a stand-alone list that lets others look at what the parents must grapple with and withstand--in all its stark and disturbing reality.

This list, sadly, cannot even be described as "exhaustive or complete," but as Mother's Day approaches, and Father's Day is just a calendar turn away, the parents coping with a child (or children) with bipolar disorder deserve special recognition and honor for their enormous valor as they:

• Look at a very young and much-loved child with a nagging fear that something is seriously wrong.

• Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.

• Accept that they need help from a professional, but feel a stranglehold of fear.
• Come to learn that there are only 4,101 child psychiatrists in the entire United States--many wary of making this diagnosis.

• Watch their child and other siblings besieged by an illness for which there is little diagnostic or treatment consensus in the field of psychiatry.

• Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.

• Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).

• Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.

• Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.

• Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn't work and tell him or her: "We're going to try something else," knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.

• Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one's hair grey.)

• Watch children's weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.

• Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.

• Have to suffer the ignorance of people in the media, who--in a cavalier manner--discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: "This is an easy way for parents to let themselves off the hook;" or "This is simply the diagnosis du jour."

• Have to listen to the word "No!" from a child one hundred times each morning, but be unable to assert the parental "No" as it will predictably trigger a meltdown.

• Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can't manage their own child. (Thankfully, Ian does not have such rages.)

• Are set adrift in a house that has become a war zone.

• Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.

• Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that "Something must be going on in that household, and with that woman;" or "She seems so nice, but you never really know people;" or "He can keep it together at school, so he must be a very manipulative kid."

• Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.

• Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an "incident" at school.

• Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what's working and where yet another accommodation may help.

• Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors' and therapists' and tutors' offices.

• Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.

• Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.

• Want the world to understand, but fear that the stigma will further isolate the child and their family.

• Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.

• Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.

• See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.

• Listen with horror as their child screams, "I don't want to live anymore;" or "I'd be better off dead."

____________________________________________________
It is hard to fathom how these parents get through a day. Their reality is simply unimaginable to the outside world, and their lives--until their children are stable--are a virtual stew of guilt and powerlessness, anxiety, fear, uncertainty, confusion, blame, and shame. These are feelings that most of us would do anything to avoid, but all are feelings that a family who lives with bipolar disorder must endure for months and years at a time.

And yet, we see family after family find the help, learn to cope, steady their footing, and move on with their lives. And then we see them turn around and offer a lifeline of information and support to others who must walk the same path, only now no longer alone.

Some people think of Mother's and Father's Day as Hallmark holidays; but we see them as an opportunity to celebrate these parents: their grit and their commitment, their love and their humanity....Parents who have never stopped trying to help their children--against seemingly overwhelming odds.

Please take good care of yourselves.

We send you our best,
Janice Papolos and Demitri F. Papolos, M.D.

A blog on Special Education

I was poking around the web when I came across Charlie Fox's blog about special education law. Mr. Fox is an attorney in Chicago, Illinois and also the parent of a child with special needs.

This blog is a definite read. He discusses special education news, IDEA 2004, The No Child Left Behind Act, parent advocacy and so much more. He also has an extensive "related sites" on his side bar.

For shocking school district behavior check out his schools behaving badly category. I was especially amused/shocked at his post about
school districts say the darnedest things. I'm sure all of us have some comment said to us by the school personnel that could be added to that list.

Go and peruse Charlie Fox's special education law blog. It is truly a great resource.

Thirteen Thursday - 13 Things about IEP's

1. Always and I mean always, bring someone to support you. If your spouse or significant other can’t come with you, bring a friend or anyone you trust. Having a second pair of ears is invaluable as well as the comfort of having someone with you that’s “on your side”.

2. Expect and prepare for the worst, but hope for the best. It is better to be pleasantly surprised than to be shocked or in dismay.

3. Don’t let your emotions get the better of you. Your child needs you to advocate for them. By getting emotional and upset you can set the stage for defensive attitudes on both sides. Once people become defensive, it is difficult to get much if anything done.

4. Always bring goodies and a picture of your child. An 8x10 is preferable if you have it and set it up in a prominent place. It reminds everyone why you are there. The goodies make everyone’s tummy happy.

5. Don’t sign the IEP at the meeting. Say that you want to take it home and look it over to make sure you understand everything and don’t have any more questions. It is your right.

6. There is no such thing as a draft IEP.

7. If you do not agree to the IEP, but the administration insists that you need to sign for them to do anything. You can sign it, BUT make sure you write underneath or next to your signature that you do not agree with the IEP.

8. Document everything. Write down what was agreed upon at the IEP. At home, type up a list of what you understood to be agreed upon and then send it to the parties involved verifying the information.

9. Don’t assume everything agreed upon at the meeting verbally will be written into the IEP.

10. If your triennial IEP is coming up, request any testing you want done well in advance of the IEP. This is when the school determines whether the child should continue in special ed. or be exited out. This is the time to do any extensive testing.

11. Remember, the school districts don’t work during the summer. If your child’s annual IEP is in September or October (assuming a start of school at the end of August as it is here), request testing now. The school is way to busy in the fall trying to get everything running smoothly. Any new staff in special ed. will be busy trying to catch up and be familiar with the existing kids as well as incoming special ed. kids. Having the testing begin when school starts can push the annual IEP back and/or have the staff rushed when testing.

12. Shane over at ADHD and LD Resource bloghas a wonderful article called Preparing for your first IEP. She has some great information as well as links to some wonderful resources.

13. One of the best sites for information and help on IEP’s is Wrights Law. They are a great resource for parents and have many articles that you can download about a variety of issues. They also have a free newsletter that you can subscribe to. I have their book “From Emotions to Advocacy” and it has been of great help to me.

There are many, many more resources out there. My goal is to try to blog about a new resource each week. Check back often as I’m continually updating my lists.