Thursday, July 29, 2010


Akila saw a Psychiatrist today for the first time. I really liked this lady, what a relief!! Learned some really good stuff, and that we are way under medicating. Have lots of wiggle room and she mentioned the option of a Ritalin type of a patch that works for 21 hours. So you don't have that 3 or 4 pm crash where she turns explosive. Bummer, is that we have to prove to our insurance company first that all the other options don't work first.

So we are starting Concerta, a slow release form of Ritalin (I think). Also learned that one of Akila's meds for her Cyclical Vomiting Syndrome might be confusing the enzymes in her liver as it is the same one that metabolizes the Risperidone. The Pediatrician and I were thinking of stopping the stomach med as we have not had the vomiting issue for over 2 years now. We will stop it as we can always go back on if we start with the vomiting episodes again.

This Dr. was great. The best part, was that I got a really good sense that she gets FASD, and you FASD parents know what I'm talking about. She asked me how much I know from an intellectual stand point about FASD (her way of saying she knows I am living it, but have I read up and learned all the junk that I have been learning by books, workshops, conferences, blogs, etc). I said I was fairly well versed in it. She said good and that she gets concerned that kids like Akila will come out of it with 88 different mental health diagnoses when it really comes down to the alcohol. She then explained how it is the primary disability and all the rest secondary ones, and that basically ALL the behaviors we are struggling with, are due to the prenatal exposure. I know that for sure!

It was kind of nice that she shared this with me even though I knew it. She also told me to feel free to make an appt with just her and I (no Akila), if I ever wanted to talk without Akila around and that was great! I always find it awkward to talk about the child so much in front of them. Especially because during an appt like this, you mainly are focusing on the problem behaviors and I would think it would sound intimidating to a little kid. She was playing, and did turn to give me an evil eye and silently mouth to me that she hates me. Lovely.

As many of you know, I love Children's Hospitals and Clinics. I have never been very impressed with their psychological services though. So I heard of this Dr., Dr. Elizabeth Reeve through a woman who use to be her neighbor and said she was suppose to be a Pediatric Psychiatrist expert and she had been featured on shows like 20/20. I looked her up and she looked great on paper- she is with Health Partners. I called to make an appt, they said she likes potential patients to email their bio including meds and a few key points. I did this, and she emailed me back within an hour and said to call and make an appt. I called, and got an appt for 2 1/2 weeks later. It would have taken me months to get an appt at Children's. I was impressed immediately.

So, we have one more specialist. But she likes to email and I really appreciate that. I tend to work most after 10 at night. We will start the Concerta tomorrow. Hoping it lasts longer, it should! It was $57 compared to the $5 for Ritalin. Ugh. Still waiting on TEFRA to see if she will be getting on MA. Ridiculous process. The SMRT (State Medical Review Team), had sent the junk back in the spring and wanted a more recent neuro-psych exam. This is why I had to bring her back in for that testing (which costs over $2,000, we pay 20%-do the math!). I would like to say to these Dr.'s, does FASD and Turner Syndrome go away? Could she have been cured in the 3 years since the last report? For real, give me a break. We are running out of money!!!

Tuesday, July 27, 2010

Catching up

I had my weekend getaway this past weekend- it was totally amazing. I got to see lots of old friends, and I got to water ski and tube. The weather was beautiful and I had a really relaxing time.

Akila's weekend with Wendy went really well and the other 3 kids had an uneventful weekend (which means good), with dad at home. I had planned Imani's birthday party for tonight (Tuesday) as Angie was set to take Akila out and this is a good thing. Akila and parties don't always mix. I gave Imani the choice to have Akila attend the party, with Angie kind of helping as Akila's PCA. Kids were being dropped off her, and I was going to drive them to the beach to swim.

If Akila was losing it, the deal was that Angie would leave with her. This afternoon, before party (which was from 5-8), we were driving around running errands and Akila was getting mean. Imani leaned forward and told me quietly while I was driving that she had changed her mind and did not want Akila to come. Her morning meds had worn off and she was getting mean. We got home and took her 2nd dose and she was a bit better. So we tried it.

Akila did pretty well, Imani is so patient and forgiving with her. When we were driving in the beach, I couldn't help but be sad as I watched Akila desperately to fit in with girls that are one year younger than her. She was laughing with them, and most often, not at the right time. She was trying to interject things into their stories, and it did not make sense. She did not get mad, and no one made fun of her, but it was one of those times when you can see how much she does not fit in with her peers.

Driving home, Akila was in Angie's car, Imani was with me. Imani said that next year she doesn't want Akila to come with- Akila had been calling names and being mean, which I did not notice. I said that was fine. Haleigh, my niece, is sleeping over (my boys went to her house for the night). After the rest of the girls were picked up, I said our friend from next door, M, could sleep over also. Akila lost it. Big time.

I had to drag her out of the family room in a rage. Eventually, I was able to calm her down. A new distraction that I started using last night, and used twice today, worked. During the rage, I tell her that I can hear her baby, Jazmine, crying. I have tried this before with no success. This time I threw in the twist that she sounded sick. I felt her forehead and said she had a fever. We had to go into medical mode and get some meds for the baby. Even gave her a shot after Akila got her evening shot.

This worked last night, earlier today, and again tonight. Also, tonight, I threw in the added bonus that Jazmine was scared of the sky as it looked like it was about to storm, which it did shortly. She stayed in our bedroom with Michael and I and nursed the baby. We fed her, burped her, cleaned throw up, etc. Akila watched some chef show with us, and I told her that she and Jazmine probably should sleep in our room as Jazmine seemed scared. Thankfully, this worked. I knew there was no way she could make it in the sleepover in the family room.

We hate to have her sleep in our room. She then tries to do this every night. But it was the best option tonight. I will tackle the problem the next night, when it is not Imani's special night. I am now planning Akila's birthday party for next week and if you remember, last year's was a weird one. I had some awesome teenagers from the dance studio come to help, and Akila had 4 friends. Akila just wanted to hang with the teens, her peers did not. The dynamics were weird.

This year, I am just inviting the teens. They really like Akila and are great with her. She does not really have any friends, and I didn't like how the girls we invited last year, just ignored Akila. Akila thinks that she is going to invite both age groups. I will tackle this issue later with her.

Next week, Akila's summer school class, Quilting and Sewing, starts and runs for three weeks all morning. I am ready. I pray that she wants to go the whole session and does not get resistant. We could really use some peaceful mornings around here.

Monday, July 19, 2010

Satan's side

The kids are outside playing. Akila is under control, but being a little mean once in awhile. Zeke just asked her why she likes to be on satan's side. They are engaged in a conversation right now about why Akila likes to be mean, Imani is also in the conversation. Imani and Zeke are calmly trying to explain how mean she is, and asking why she likes to be mean.

Zeke is telling her that something in her brain doesn't seem to be connected right. They are also explaining all the nice things that our neighbor girl (who Akila was being mean to), does to Akila that is nice. Akila is actually handling the conversation fairly well- she is not getting more mad. Two weeks ago, this conversation would have enraged her and she would have been on the attack. We increased her Risperidone about a week ago, and it has helped. I just hope it continues to help. When she started on it, it only helped for 4 weeks.

Saturday, July 17, 2010

Super fun day

Thursday was Michael's birthday so he took Thursday and Friday off. On Thursday, we went and bought the girls each a new bike, Zeke a skate board, and Hezekiah a flying helicopter thingie. I got new shoes. Michael got nothing. This is how he likes it. I actually did order him something, 3 weeks ago, and it has not arrived yet. After shopping on Thursday, we went to the health club and swam.

Yesterday (Friday), we went to Bun.ker Beach in Coon Rapids. I love that place. When I was in college, I use to go there, over 20 years ago. At that time, it just had a wave pool, but I love the wave pool. Before kids, I was a water park junkie. Kids ruined that. Sounds weird, but they just haven't been old enough to make it very worthwhile. Plus, we can never afford to travel. We have been to the Dells with the kids, that was fun. Bunker added a few waterslides and a zero depth pool with a climbing thingie on it several years ago. Within the last year or two, they added a lazy river thingie with two more slides and an adventure pool that has one of those aqua rock climbing things it it. Very fun.

We arrived at 11:30 and left at 7:00 when it closed. It was awesome. Akila was very well behaved. The only bummer was that she was kind of glued to my hip and wanted me to swim with her the entire time. If I would go down a slide with another kid or something like that, she would find me shortly after and chew me out for leaving her. Imani and Hezekiah were swimming buddies, and Zeke was either with Michael or I, so I get it. Akila also wanted a swimming partner.

Michael's brother, Dan, and his youngest son Isaiah came also but didn't arrive until about 3, I think. Zeke then partnered with Isaiah. It was a long day, and it went well. We decided to push our luck and eat out when we left at 7 with Dan and Isaiah, and it also went well.

Akila wants to know what we are doing today. NOTHING!! I told her we need to rest up and take a break. Sunday we are going to meet Dan and Tara and their kids for a summer birthday celebration at Minnehaha Falls (I think). Need to spend this lovely day cleaning, resting and recovering.

Thursday, July 15, 2010

Brief break

I dropped Akila and Katie, a high school student who is staying with our neighbor for six weeks, off at the local pool tonight. Katie has been hanging out with Akila about once a week, and it has been a great help. It is like a little taste of what it would be like to have some PCA support (still waiting to hear on MA through TEFRA).

Katie has been doing a nice job with Akila and has shown great patience (the poor young woman sat last week and played Barbies with her for well over one hour, which I think is torture). I will pick them up at 8 when the pool closes. What a fantastic way to have two hours of peace after a busy day. I could get use to this.

Wednesday, July 14, 2010

Meeting up

I am averaging meeting one blog friend a week, pretty good. Sounds like I get out all the time, doesn't it. Doesn't feel like it!!

I got to meet my blog friend, Megan, last night. It was wonderful. We met at Rosedale at 6:00, went to a Pizza restaurant there and sat outdoors. We shared a pizza, but more importantly, we shared our struggles and triumphs. Before we knew it, we were the only ones left and they were closing. It was after 10:30 and we were just getting going.

Megan and her husband have adopted older children, and have been facing many struggles on this wonderful journey. I myself have not experienced the same journey, but our journeys intersect in many different areas. So many behaviors are similar between RAD and FASD, but are being exhibited for different yet similar reasons. What is very similar, is our own struggles with how to respond to these behaviors. How to deal with the emotions of feeling like a complete failure some days (most days), the anger that can sometimes arise toward a child exhibiting out of control behavior, and so on and so on.

It was great to meet with you Megan, it was very refreshing.

Speaking of refreshing, have I mentioned that I get a weekend away from everything in two weeks? My friend Wendy, is taking Akila for the weekend of July 23-35 (God bless you Wendy!), and I am heading to Willmar by myself to spend the weekend with friends on the lake. I can't tell you how excited I am for this weekend. I grew up on a lake in Willmar, and it is one of my most favorite and relaxing things in the world to do, especially without kids.

I was there on the 4th with the kids, and it was not relaxing. It was fun, and went well, but it was not relaxing. I am looking forward to relaxing. Three summers ago, my friend Juli came with me for this weekend get away (one night, it has always just been one night, this year it is 2 thanks to Wendy- can you hear how giddy I am?), and it I have a memory from that trip that is something I will never forget.

My girlfriends and I golf on the Saturday morning, and I am not a golfer. We did 9 holes, and I thought I was going to die. It was a 90 degree day, and golfing 9 holes takes forever, in my ADHD kind of brain. They wanted to do 18. I said no way, and Juli and I hightailed it out of there and went to the lake home where we were staying. We got into the "Posse", a 4 person inner tube, put a cooler with some pop and water in one hole, snacks in another, and ourselves in the two remaining holes. We asked Peter and Snooky if they would come out in a few hours and find us, as we just planned on drifting across the lake.

We floated for hours, got off the tube, swam, laid, talked, napped probably, and right when we were about to hit the docks on the other side of the lake, Peter and Snooky came and tied us up to the pontoon and hauled us back. I remember laughing the whole way back, as we were getting sprayed with water and our remaining snacks were getting drenched. We didn't care. It was just a carefree day, and so peaceful.

Juli can't come with me this year, and that is a bummer. I will be staying at Matt and Joanna's house, and they have a boat that we will put in one of the area lakes. I am really looking forward to it. I am just giddy with excitement. Are you jealous?

Tuesday, July 13, 2010

Calm weekend

We had a pretty calm weekend, it was really nice. Raquel babysat on Saturday night and Michael and I went out, it was the first time in a long time!!!

Akila's Risperdone medicine has been increased and I think we are feeling the good side of the increase. When she first started on this med, we had 4 really good weeks. Really good. I'm hoping it helps for more than 4 weeks this time, if not, we won't stay on it. The Dr. is having us try this, and if it is being helpful, we will probably switch to a different but similar med. Akila has been putting on weight too quickly on it which is a side effect.

She is also scheduled to see a Psychiatrist for the first time in two weeks. Hopefully this will help us with medicine management and behavioral challenges.

We are almost half-way through summer, and it really has been going well all things considered. Akila has been refusing to go to any programs, which is making it more difficult. The only things we have going on a scheduled basis is swimming lessons on Monday afternoons for 40 minutes, the other 3 kids have an hour long ceramics class on Wednesdays (Akila, rages, and ceramics are not a good fit), and Angie taking Akila (and sometimes the other kids) out on Tuesday evenings. Not much if you ask me.

The other 3 kids don't usually want to go anywhere. They are home bodies and just want to stay home and play with neighborhood kids. And this makes Akila want to stay home. She does have a summer enrichment class, quilting and sewing, at our school for three weeks starting the first week of August. That will be really nice!!!!! She is excited for that and so am I.

Thursday, July 8, 2010

Lotion, round 2

I just had a mini smackdown with Akila and the lotion bottle. Actually, I was using some medicated goop as some spots are bad. I was just aiming for the bad spots.

She raged, we wrestled, I got a little on. Then I left her alone to settle down and get dressed. She just came to show me that she has lotioned up most of her body. Score one for mommy and Akila. She did it herself. This is rare, but it does happen sometimes. She also wanted to alert me and show me that her breasts are growing. This is nothing new, she does this about 5 times a day. TMI, I know.

Last night, I got to braid her hair. I saved it for the evening as she is usually pretty good when getting her hair done, which takes a couple of hours. We watched a Nativity movie that our neighbor gave us last week. It is pretty well done. She had already watched it once. During the part where Joseph and pregnant Mary are walking from Nazareth to Bethlehem, there is a scene where they have stopped to spend the night in the dessert, and Joseph's feet are bloody from all the walking.

It hit Akila all of a sudden that they did not have band-aids. She was quite sad for them. She is obsessed with band-aids. Obsessed. She then went through a list of all the things they did not have back then: air conditioning, movies, TV, cars, etc. It was a long list.

Before the end of the movie, when baby Jesus was born, Akila asked me to leave the room. She did not want me in there for the birth of Jesus. They obviously don't show the actual birth, and don't make too big of a deal out of that part. I couldn't figure out what she had planned. Usually, when she has a request like this, she has something up her sleeve. She had a blanket wrapped around her as we were doing her hair, so I wondered if she had stuffed her tummy and was going to try and pretend to give birth at the same time. This is something she would do.

So, I stepped out before the birth of our Lord. I kind of spied on her through the curtain on the french door, and all she did was watch very intently. It was very interesting. I returned after the baby was born, and she thanked me. She was not able to verbally express why she wanted to be alone, but I thought it was kind of cool. Not sure why.

Today we are going to meet my sister-in-law and her two youngest kids at Lake Nokomis and I think I am more excited than the kids. I love beaches, and I love Tara (sis-in-law). We have grown closer in the last year or so and this has been a great support for me. I also need to get these kids out of the house!!!!!! They are driving me nuts, in all the usual ways kids do that. And one is doing it in the not-so-usual ways kids do that.

Wednesday, July 7, 2010

Zeke the organized one

Zeke is an organizer and a good cleaner. Here is an adorable picture I had to talk him into letting me take. Many times in the evening, when he is brushing his teeth and getting ready for bed, he will line everything up on the counter.

Notice what is on there: deodorant, tooth brush, tooth paste, mouth wash, dental floss, soap, chapstick, floral lotion, two inhalers he takes each month, and a floral body spray. He is hilarious!!! What a cutie.


Immature is the word of the day around here. Imani asked me today why Akila likes to watch Sesame Street and Caillou. I reminded her that Akila is more like a 4 year old than an almost 11 year old. Oh yeah, Imani said.

She also loves shows like High School Musical, but most often, she chooses shows that preschoolers like. It is helpful to remind me that she is a preschooler basically. Although there are many of her behaviors she had when she was in preschool, that I long for now. Like she did not call names, hit, kick or get so incredibly mean.

Mean. That is a word I have been using a lot lately. She is so mean. Mean to the other kids, the neighbors, Michael and I. She just seems so mean and angry all the time. It is hard to be calm and patient when you see her being so mean.

Another constant battle we have had for years, is putting on lotion. I have tried many creative ways of doing it (glitter lotion, letting her choose lotion at girly stores-although this stuff is not good for dry skin, but better than no lotion-, massaging her with the lotion, tried it every time of the day, etc.), but have not had much success. She has incredibly dry skin naturally, and now with summer, and swimming, it is out of control. She has had a cold or allergies for over 3 weeks, and her nose has been raw all the way down to her lip.

She refuses lotion. It is to the point, where she and I just had a lovely wrestling match to get her lotioned up. She raged, hit, ran, and I just stuck with her. There is lotion all over my room (where the struggle began), on my bed, tables. But I got a lot on her, she was wiping it off with a towel when I left to go compose myself, but some good stuff should have soaked in first. If I was a stronger woman, I would gather up the courage to go into this battle each day. But I'm not. I pick and choose my fights. But we are close to the point of bloody skin from dryness. Time to fight I guess.


The kids and I made our annual pilgrimage to Willmar for the 4th of July weekend and it went pretty well, just a few bumps in the road. Akila was in quite a mood the final day, and the above picture was taken then. She was intentionally trying to look mad.

We were there Saturday to Monday, 2 nights. The second day, in the afternoon, Akila migrated over a few yards and ended up hanging out with a different family on their boats for a few hours. It was a nice break. But it backfired. I had warned everyone, Peter and Snooky (who my kids call Grandma and Grandpa), and my friends, Joanna, Matt and their kids, not to mention that there were fireworks that night. What my kids don't know won't hurt them, right?

Well, I forgot to tell the family 3 houses down. I should take out an add next year. Someone in the family invited Akila to return at 10 to watch fireworks. Oh no. It did not go over well. I was getting the kids to bed later than usual, but Akila would have nothing to do with it, as she had to go watch the fireworks with the neighbors. She got very mean about it.

I then realized that the family wasn't just watching fireworks in their yard, they were all getting on their pontoon to go out in the middle of the lake. It was packed, thank goodness. We had a reason why she could not go. She still insisted and we ended up going over their so they could confirm for her that it would not work (I was going to whisper for them to tell her no, but they did without my help). She had probably exhibited a tiny bit of rudeness during the day that they probably talked about at supper. Lovely.

So, Akila of course did not take no very well. She nearly pushed me off the dock. I got her off the dock, and during the 3 yard walk back to where we were staying, she called this lovely family the N word, the B word, and a few other words. I don't think they heard any of it, as they were getting on their pontoon and it was loud. But they probably saw her hitting me the whole way home. By the time we walked through the yards, she was in full sobbing mode. I tried to get her to sit down with me to watch the fireworks, but thankfully, the mosquitoes were out of control.

We moved inside, and watched them for a little while. These are fireworks that various people around the lake are setting off themselves. In the middle of the lake, you would be able to see the fancy ones in Spicer, but not from our house. She kept on thinking that we were seeing the finale, and I had to explain that there would be no grand finale, and she could watch for 5 more minutes. This didn't work well, but I finally got her to bed.

All in all, it was a super weekend. Peter and Snooky are awesome grandparents!!! Peter has the kids help him do things and is always teaching them how something works. Hezekiah eats it up. Hezekiah is the type of kid who will explain something for 30 minutes to the point where I can't listen anymore. So he hears everything and absorbs information. He loves Peter! Peter is patient, and brings all 4 kids fishing on the pontoon.

I hate fishing. I think it is boring, and I can't stand it with kids and hooks flying everywhere. When we were out on the pontoon, we were trolling, and Akila was convinced that we needed to stop to be able to catch fish. Peter explained that we needed to be trolling (plus, it was crazy windy and we were blowing on to shore), but she was mad. She kept swearing and calling him names, and the best thing, is that he could hardly hear any of it. He wears hearing aides and has a hard time hearing. I was telling Snooky about how Akila was acting, and asked Peter about it. He said he thought she was saying some mean things but he couldn't hear her and he just laughed. The patience of a saint.

Within the first 30 minutes, Snooky told me she had read some of my blog and since I didn't have a mother anymore, she felt that she needed to get on my case about taking care of myself. Isn't that the best? It is really nice to be cared for by a family like this. It does make me really miss my parents and reminds me how blessed I am to have people in our lives who love us and our kids. Thanks Peter and Snooky, you are a blessing to my family.

(This last picture is from Imani's birthday dinner at a mexican restaurant. I thought it was cute so I included it.)

Tuesday, July 6, 2010

Too funny

I got the following several months ago in an email and I just came across it again. It made me laugh so hard, I had to share.

A first grade girl handed in the drawing below for a homework assignment...

After it was graded and the child brought it home, she returned to school the next day with the following note:

Dear Ms. Davis,

I want to be very clear on my child's illustration. It is NOT of me on a dance pole on a stage in a strip joint. I work at Home*depot and had commented to my daughter how much money we made in the recent snowstorm. This drawing is of me selling a snow shovel.

Mrs. Harrington

I just got the biggest laugh out of this.

Friday, July 2, 2010

New friend

You just can't ever have enough friends. And I have learned something new about that over the last 5 years. You just can't have enough friends who parent challenging kids. I haven't really lost any friendships like many people have due to parenting a very challenging child, but some friendships have grown much more distant and surfacey as most parents of typical kids do not understand what it is like.

I have many friends now who parent challenging children. If you're reading this, you might be one of them. And I may have never met you. But I consider you my friend. One of my good friends calls you my fake friends. But the truth is, you know more about my family, my thoughts than she does. I know more about your family and thoughts than I do of hers. It is a strange thing, but it has been an answer to prayers.

Yesterday, I got to meet one of my "fake friends" (I don't think you guys are fake, but I do think it sounds funny!). Linda and I met, and she blogged about it here. I can't tell you how much I enjoyed it. Now, she is my "real friend". I hope I don't scare her off, she has already been a great resource to me and I know she will be in the future. Her daughter, DQ, who just turned 18, is so much like Akila I can't even explain it. We are in for a bumpy ride, and I am glad I have some new friends to ride with.


A few years ago, I was on a family panel for a MOFAS event and I met a mom who was far along on the FASD journey. She spoke about a profile she had put together for her son with FASD and I asked her to email it to me and she did. I filled it out and use it at IEP meetings, at the beginning of the school year with new teachers, at recreation programs, etc.

I was thinking about it this morning and I thought it would be something good to share so I have copied and pasted it here in case any of you would like to use the template. If you would like the word document, just send me an email requesting it and I will email it to you. I have found it to be very useful. In Akila's profile, I took out a few of the sections that won't apply to her until she is a teenager, so pick and choose the sections you need.

Profile of Name

Name is age years old and in grade at school. Name has been diagnosed with Fetal Alcohol Spectrum Disorder (ARND), list other disorders if any. Add short background statement, adopted, age, significant trauma, etc. Name has an #### IQ. Example: However, his disabilities affect how he is able to effectively utilize his intelligence. (May 2006 – Verbal IQ – 96; Performance IQ – 117; Full Sale IQ 104).

His disabilities are demonstrated through:

  1. Lack of cause and effect thinking – difficulty seeing the consequence or predicting outcomes
  2. Impulsive behavior
  3. Inconsistent performance
  4. Remembers some things – not others
  5. Anxiety – struggles with transitions and new situations – needs step by step explanations before changes occur to lessen anxiety
  6. Generalization of information – difficulty in applying rules in new setting - repeats the same mistakes over and over
  7. Boundary issues – often does not recognize other’s space or belongings
  8. Social Cues – can’t recognize when someone is getting upset and will continue on with the same behavior
  9. Acts young for his age
  10. Difficulty with abstract concepts like Namee and money - struggles in managing these concepts
  11. Easily influenced by peers – mimics behaviors. At risk for engaging in negative behaviors
  12. Quick to anger and show aggression – especially if provoked
  13. Difficulty in complying with rules or focusing on instruction

Name classifies his strengths as smart, funny and good looking. He is also very athletic, mechanically inclined – especially with electronic and computer devices He is determined, helpful, generous, good with younger kids and animals

Things that he would like to change about himself include: “quit telling people that they are wrong because it always gets me into trouble because I argue with them;” “my impulsive tendencies especially with money;” and “control my anger.” He is easily influenced by peers and be easily taken advantage of. This most often occurs when he is trying to be generous by giving up his belongings or money to friends in order to receive friendship.

The following is an example of what may be written. State in terms of current status and as the needs of the student for each category:


Currently employed at NAME

Enjoys working with others and earning money


§ To practice skills for getting job on his own in other environments especially jobs that would offer more challenge in areas of interest.(i.e. expressed an interest in working in computer stores or Game Stop)

o Complete application

o Write resume or secure references

o Interview for the job

o Follow-up phone calls and thank you notes

§ To develop a plan for taking drivers ed for his permit and driver’s test for his license in order to expand employment opportunities

On the job:

§ Needs to develop assertiveness so he can ask for training or help (becomes easily frustrated or defeated if doesn’t know how – has difficulty asking for help)

§ Needs to practice listening carefully to instructions and rules

§ Needs to identify the types of appropriate questions he can ask an employer in order to support his needs; i.e. What type of training is provided for the job? How would this job be part of a career track for promotion? Etc.


Name desires to go to vocational school or college in order to pursue a career in computer engineering


§ Understand the high school requirements to graduate

§ Develop course schedule from now until graduation that will support career desire

§ Explore attending post secondary classes while in high school that support career desire

§ Research post secondary schools with computer engineering certificates or degrees

§ Research career for salary and opportunities

§ Job shadow in the field

§ Take ACT

§ Complete a career assessment through Name College

Living Arrangements:

Lives at home in City with whom

Wants to continue living in the Name of City

Desires to live on his own or with friends


§ Understand the costs involved in living on own; food, rent, utilities, etc.

§ Learn to research locations that meet needs (close to job, transportation, safety concerns, close to shopping, etc)

§ Understand responsibility of caring for own living space ( cleaning, cooking, laundry, restrictions when renting,)

§ Pros and cons of living with friends (trust issues, legal issues with joint agreements or contracts, getting along with others and resolving problems)

Community recreation and leisure activities

Name enjoys working on his computer, weight lifting, writing lyrics for rap songs and being with friends. Even though “hanging out” with friends it is important for Name, he needs to take into account what he could do if friends are not available. Currently, leisure Namee is spent interacting with cyberspace friends. Name is not involved in any extracurricular activities at school or home.


§ Develop a new hobby that involves others to prevent isolation

§ Join activities at school or church to expand circle of friends and interests.

§ Seek a community activity such as volunteer work at an animal shelter.

Personal Management

Name struggles with social skills and assertiveness with peers and authority figures. He can easily be taken advantage of and will often loan money or other belongings to secure friendships. He often boasts about his strengths or what he owns, etc. which may offend or annoy others making him vulnerable to being bullied or taken advantage of. He tends to give up on relationships, easily, and makes assumptions that others like or dislike him. He tends to isolate himself after school.


§ Learn to interact with peers, adults, girls, (not on internet) in order to learn the skills of establishing meaningful relationships including a healthy understanding about sexuality

§ Understand the dangers of internet relationships

§ Understand how to self protect and not be taken advantage of- especially when money is at stake. At risk for becoming a vulnerable adult.

§ Develop self-advocacy skills – be able to ask for help or assistance

§ Learn about the future obligations of taking care of a family

§ Learn to plan own meals; eating healthy, establish regular mealNamees

§ Practice anger management skills; avoid posturing, inappropriate remarks, aggressive behavior

§ Learn communication skills that help him to discuss topics in a neutral way in order to maintain positive relationships and avoid conflict.

§ Learn skills that help him to approach others and make himself appear more friendly; i.e. introductions, shaking hands, eye contact, smile etc.

§ Learn to comply with rules at school and on the job on a consistent basis – be respectful of authority (Needs to have weekly contact with Probation until restitution is paid)

Financial Management

Name struggles with managing his money. He spends his earnings as fast as he receives them and often feels angry with himself for not being able to be more frugal. Name will need strong supports and training in this area in order to survive in an adult world. He also needs to develop a plan for paying his restitution.


§ Develop money management skills

§ Understand cost of living and how to prioritize financial obligations and set up a budget in order to live within his means

§ Understand how to manage checking accounts, savings accounts, debit cards and ATM cards and how to pay bills. Practice interacting with a bank by discussing with bank personnel the rules and consequences for sound banking.

§ Learn the pros / cons of credit cards; how credit history is developed and how a negative credit report can impact his life.

§ Learn about payment of taxes and annual filing

§ Research the danger of internet schemes and “get rich schemes” including gambling

§ Develop a concrete plan for paying back his restitution. (Owes Approx. $700)

Health and Medical

Name was parentally exposed to alcohol and is diagnosed with FASD / ARND. (Fetal Alcohol Spectrum Disorder / Alcohol Related Neurological Disabilities. He also has PTSD due to previous medical procedures and diagnosed with ODD.


§ Understand supports that are available to him at age 18 – i.e. MA, other medical or social services

§ Practice setting up own appointments – understand co-pays and coverage by insurance

§ Determine a friend or family member who can accompany him to the dentist or doctor for support in dealing with anxiety from the past

§ Name needs to understand and accept his disability and learn how to advocate for himself.

§ Understand how FASD and PTSD affect him and to develop day-to-day living strategies in order to cope with his disabilities.

Future Hopes

We believe that with the proper supports and help that Name has the ability to adapt to his disabilities and be a productive member of society. We hope he continues to be challenged in an academic setting and at work so that he accomplishes his career goals.

This transition plan should be developed to accommodate needs until the age of 21.

We respectfully request that this Profile of Name be included n the written record of this meeting as part of our parent input.

Parent Name


Thursday, July 1, 2010

Imani is 10

I started this post on Wednesday, and am just finishing it.

Imani is such a blessing, I can't even explain how much of a blessing she is. She turned 10 today, and I have been thinking all week of how thankful I am that the Lord brought her into our family.

Imani is kind, sweet, generous, and strong willed. She is fun, likes to tell jokes, loves to learn magic tricks and do them for all of us, and enjoys performing-even though she is fairly quiet and somewhat shy. Go figure.

She is the perfect sister for Akila. God knew what he was doing, that is for sure. Just now, I had to give Akila her evening meds. I also gave Imani a glass of juice, and said let's have a race. Med time is always a challenge with Akila. I watched as Imani (with no coaching from me), watched Akila's speed, kept hers slower and let Akila win and made a big deal about Akila winning.

I see Imani growing up right before my eyes every day, and I am so proud of the person she is. I love you Imani!!

Exit strategies

I feel like a general in war sometimes. I am always thinking ahead about how to avoid a war (rage), how to exit a dangerous situation quickly, what weapons (snacks, games, gum) I need to bring with to distract, preparing the troops (other 3 kids) for contingent situations (we may have to leave early if Akila loses it), preparing the troops for battle (please ignore any name calling, little nit-picking, etc), and gathering the troops for a huddle prayer before we step into the fire (prayer before we leave the house).

Yesterday was an event called Music in Plymouth. It is a fun event where 15,000 people go, sit on blankets, watch several bands followed by the Minnesota Orchestra followed by fireworks. We have been going for the past 4 or 5 years with my friend Juli's family and her parents, who are like my parents lately. It gets a little more challenging each year as Akila's behavior gets worse. But I decided it is worth the risk and we went. It was also Imani's birthday yesterday and she really wanted to go.

So I strategised. The parking and traffic are horrific at this event. We have to bring blankets, coolers, sweatshirts, etc. So hauling a bunch of stuff 6-8 blocks is not fun, especially at 10:30 at night. Michael can never come as this is at the end of the month always and it is when his work is busy and he is working late. The event is right next to a health club we are members at. This health club has an outdoor pool.

My strategy, was to go early in the afternoon, park exactly where I wanted to, walk a few blocks to the health club, and swim all afternoon. It worked great. We swam, got the kids dressed, put them in the childcare center, went in the locker room and showered in peace. Got the kids, brought our swim stuff to the van, got the picnic stuff, and went to the event. First part went well.

We got there about 6:00, fireworks start at 10:10, Long night. We could have gotten there at 5:00, so I was an hour late. Brought notebooks and crayons for something to do. Akila was not happy with the notebook she got, it was not new enough. Had a major fit about that, until Imani finally traded with her. Avoided some early fireworks. Several more situations just like that, and more fireworks avoided.

Then, Akila went up to the front stage to dance, and we were quite a ways back but I let her go by herself. We could see her on the large TV screen. Perfect. I think she danced for at least an hour. It was a lovely break. Then she came back, and vacillated between being manic and mean. At one point, she was hitting and kicking the kids for fun, and laughing. So I ended up doing a few brief pseudo restraints on her. I'm sure there were some wide eyes.

When there some fire dancers at the end of the night dancing, right before the fireworks (so it was getting late), they were hard to see. Akila yelled a few times at people who were in front of us and had stood up, "Sit down big headed dumb a**es!" It was lovely. Proud moment. We had a few more little physical tantrums, but all things considered, she did well.

Fireworks were fun, we got through the crowd, our parking spot was great and we got out of the mess quickly. I had her meds in the van waiting and she took them without a fight. Drove home in silence. Silence people. That never happens, even at nearly 11:00 at night. Got home, she went right to bed, and is still sleeping. It was a good night, very few issues, and Imani had a great birthday.

The kids and I go to Willmar this weekend for our annual vacation. I had been hoping that Natalie, my wonderful niece, was going to go along to help me (this is the one time a year we leave Michael alone to get some peace), but she has chosen to do something with her friends. What a brat. Just kidding. But I am bummed. Tried to find some other help, but no luck. So wish me luck.

We get to swim, boat, tube and do lots of fun stuff with this family. They are like another set of grandparents for my kids and we love them dearly. I grew up on this lake, they were our neighbors, and parents of one of my friends. Since my parents have died, they let us come out for visits. I love this family!!! We go to the 4th of July parade in Spicer, but we have always skipped the fireworks. I figure that the kids have already seen the fireworks each year at Music in Plymouth.

Plus, they are so tired from all the swimming and fun, that I can't imagine keeping them up that late again. It is already hard enough to keep them up late for the Plymouth event, we rarely do things that go so late.

I have one more day to plan my strategy for the Willmar trip. I better sit down in the strategy room and get to work.