Posts Tagged ‘ADHD

05
May
12

when it works

One of Ryan’s biggest problems lately are transitions between activities.  He tends to get his most belligerant, hostile, and defiant. Sometimes it is just hard to make a smooth transition for him. Sometimes you find a new technique to help make it easier.

This morning we had to go pick up my husbands motorcycle. We came home and I fed the kids lunch. My husband arrived and I said ok, Ryan it is time to start the homework before you go out to play. He got really mad that we pulled him from his game. Instead of trying to get him to work, or cajole him we let him sit alone as we cleaned up the kitchen. After about five to seven minutes of having his head on his folded arms his mood was 100% different. He happily got his work done without any strife or stress. I started with him and midway my husband took over so I could go to sleep for a while before my night shift. We praised him up and down because he made a positive transition. He worked hard on the homework and never a negative word was uttered.

The small wins are the most powerful.

02
May
12

I kinda can’t wait

Today were the final report card conferences for the boys.  At the end of the year they just send home the grades.  It was a mixed bag.

Aaron is doing phenomenally.  He is getting a special award for reading so many books this year, 520 at last count.  He is so driven when it comes to school and he loves it.  I am overjoyed he had the same teacher Ryan did.  She is the rare special teacher who puts everything she is into her job. I told her what teacher I’d like to see Aaron with next year and she agreed.

Ryan is also doing well.  His lowest grade was a C but that was in all the major academic subjects.  He fights very hard for his C’s and he did get some A’s and B’s as well.  We discussed his placement for next year.  The school is doing away with the idea of all the IEP/behavior issue kids in the same class.  For that I am overjoyed.  Ryan did not do well behaviorally surrounded by kids acting out like he does.  He tends to rise to an occasion and is usually better behaved when surrounded by more typical kids.  They are going to stop labeling him learning disabled next year and he will no longer be pulled out for reading.  I am actually happy about it for reasons I can’t discuss here.  (Feel free to email me for details.)  Second grade was the worst.  I was walking with a friend this morning and she really had me hopeful for next year.  She had lovely things to say about the third grade.

I kinda can’t wait for these last six weeks of school to pass quickly.  Even though having them home is going to be hard I welcome washing away the bad taste of second grade. Although I have to work from home and work at the bar I have done it before.  They will have a ton of activities and I really look forward to home school summer school and working in fun and interesting places.  We have plans to do activities and see things.  It will be full on Mom camp far from the issues we have been fighting with all year.  Right??

23
Apr
12

On being all thrown off

This week is already thrown off and it is Monday. I’m bracing for the behavior that results from being so thrown off schedule.

I am working on a Monday. The kids are off tomorrow, which means a a day of parenting with little sleep, which required extra ammounts of patience. We skipped homework this evening so we also have that to do tomorrow. Ryan has his PDD diagnosis Wednesday, which means he will be out of school most, if not all of the day. Ryan then has a field trip Thursday which is his first this year.

This is too much like spring break. That took three weeks of super consistent parenting to get back on track. This is the first week they are giving us more homework at night, and less on the weekend. Next week they will give us even more homework at night and even less on the weekend.

It kills me. Last week for the first time Ryan did not totally fail a test. He has four tests a week. He usually does well on two or three of the test and gets anywhere from a zero to a fifty on the other. Last week for the first time Ryan recieved two A’s and two B’s on the tests. For him this was huge, he and I jumped up and down with excitement. Our study methods have been adjusted refined and we found what is working for him. Yes, my boy who takes a but longer to learn stuff was starting to really succeed and they had to change the rules arbitrarily. I am just becomming so bitter about it.

02
Apr
12

World Autism Awareness Day

I see alerts of World Autism Day screaming at me from my social media and my blog reader.  Am I a part of this community?  Well, kinda.  Many professionals have completed countless questionnaires with me, my husband, and the school that point we are part of this community.  Our official diagnosis at CHOP is not till April 26th.  We are in limbo.  I know we are living with ADHD, Autism’s loud, obnoxious, wild, cousin.  Does Ryan have Autism, maybe.

I know when I was told of the possibility that Ryan was one of the 1 in 88 boys with Autism I was pretty sad.  I can say I hid and raged for a while and lost a close friendship because of it.  I have done a ton to help my mental state but I was deep down so sad.  I can say on the eve of the diagnosis I feel pretty grounded.  Ryan is Ryan in all his amazing redheaded, smart as a whip, quirkiness.  If he is part of this group so be it.  I will love him no less than I do today and I will continue to fight for him with every ounce of my being so that he can succeed and be understood.

I read so many Autism blogs.  The Domestic Goddess, one of my favorites summed it up so well on her post.  I am also a real grass roots advocacy type and I agree that there are endless opinions flying around the internet.  Her post just made me want to stand up and cheer loudly.

I may or may not be living with a person with Autism.  He is the same kid today as he was yesterday.  He is challenging but endlessly charming and he is mine and I try to celebrate him each and every day.

26
Feb
12

Rubbed Raw

Friday was a really emotional day.  Ryan had the worst morning.  I had been waiting for Ryan’s behavioral consultant to call me for twelve long days, twelve days to submit an evaluation with my signature.  I finally had to call his boss.  I told the boss that I would be at Senator Hughes meeting at the school and the consultant could meet me there.  I then had a long teary talk with Ryan’s counselor.  I was dumbfounded how a kid who had perfect behavior the week before was now in trouble again daily.  I was so frustrated with how alone I feel in getting help for Ryan.  She suggested a ADHD support group.  Right, the largest ADHD support group in the US is 100% funded by the pharmaceutical companies. In my opinion, to have a support group funded solely by those who profit from a disorder is a conflict of interest. I know most people think that stimulant meds are the miracle for ADHD, but I am skeptical. They are a miracle for some but I can’t imagine them a cure all for everyone.  After all of the negative effects we have had with epilepsy drugs, I am fearful.

I sat and listened intently to what Senator Hughes had to say.  His main message was what we could do as parents for our school was to make noise.  He suggested we write letters, call, and attend rally’s, let our voices be heard that we don’t want the city schools to be under funded.  The governor eventually wants to be reelected so if we make enough noise he can’t ignore us.  I sat in this meeting and quietly cried most of the time.  Finally, Ryan’s behavioral consultant showed up and pushed the long awaited paperwork at me.  He asked why I was upset and I replied, I am having a bad day.  As we left the meeting a reporter approached me and I told him how I thought the budget cuts effected our school.  Hello, can we start with the fact we have NO PAPER and work from there.  I gave the reporter a piece of my mind and a ton of information while simultaneously having a conversation with Ryan’s behavioral consultant.

The next day I had a play date with my friend C and his son D.  He lives in the township where we are thinking about  moving.  He moved to his neighborhood for the special education the district is known for.  He cautioned me. He said he has lived in his house for four years and he didn’t like his neighbors.  He knew two neighbors and didn’t know them well.  He has his parents as support but he feels like they are a family without a tribe.

Today we went to a birthday party for Ryan’s friend’s little sister.  We were invited to be playmates for the brother, and the Mom and I are friends.  Here we were a bunch of urban folks in a bouncy house place in the suburbs.  We had fun, the kids had a blast.  I had a fascinating discussion about culture with an African American woman who is 50 years old.  She spent most of her childhood in Paris as an Army brat and she discussed moving to the USA in 1966 and the culture shock she experienced.  Along with this woman we were talking to a neighbor who is German and Spanish.  He grew up in both countries.  He met his Malaysian wife at MIT. It was a fascinating conversation about traditions and culture.

We have no family support.  Our community has become our support.  I can think of five people off the top of my head I could call for emergency childcare – school pickup.  I can think of five people who have called me for the same thing.  I think about the women I exercise with, hiking a couple days a week. I started exercising last year and lately I have picked up a gang of women who accompany me when they can.  We are all completely different and on paper we probably should not be friends, but we are friends, and we laugh so hard at times it makes my sides hurt. They encourage me and inspire me in a way that I can’t put on paper. I love my diverse urban neighborhood tucked along the woods and the creek.

Can I convince the government of the city, the state of PA, and the country that urban education is worth investing in, not just for me but for all of the urban stories out there?  I will move from my house for my kids education if I have to but the perfect place for them to live is right here.

22
Jan
12

Waiting Waiting Waiting

It’s a big week this week.  Finally, we have our last TSS meeting on Friday.  I really didn’t want the meeting to be on a Friday but, of course the universe threw it’s middle finger up at me and said, too bad sleep is for the weak.  I am going into this meeting armed to the teeth with the final few pieces of paper that I thought might help.  Ryan’s teacher wrote a letter explaining how TSS services will help Ryan in the classroom.  Around Christmas his first grade teacher asked me how our quest for TSS services was going.  I told her the whole sordid tale.  She is an amazing person, and she offered to write a letter saying Ryan has been in need of TSS services for two years.  I will go armed with these two letters and Ryan’s latest behavior reports which have been less than stellar.  Before Christmas his behavior had vastly improved but since returning from Christmas break, Ryan has not had one green good behavior day.

By the end of the week we should be more sure about the date on an appointment for Ryan with the developmental pediatricians at CHOP for the suspected PDD diagnosis.  Last time I called them they reassured me that we would be hearing soon, so I went back to doing what I do so well, wait. They told me that is I did not hear from them this week, I should call.

We also were told this week by the school district of Philadelphia that there will be no summer school this year.  Summer school in July went a long way to help Ryan with his reading.  I felt so let down by the school district again and plan to meet with part of Ryan’s team who is a resource specialist about academic based camps that may spring up in the wake of summer school being canceled.   I have to find something because at this point Ryan, who started first grade with a two year reading deficit,  is only one month behind.  A long summer without help in reading will really throw him behind.  Then again, at this point I am used to the School District of Philadelphia throwing us under the bus.  Well, at least next year they can’t throw us under the bus because there is not going to be any bus service in the city.

To finish off the story of waiting.  Aaron was told in November 2010 that he may be outgrowing his egg allergy.  Yes, that was 14 months ago.  Well, as of now his appointment is a mere 84 days away.  Being able to consume egg will really change the food options in my house.

For now, I am trying to remain patient.

10
Jul
10

Peaches and Cream

I love that my best friend from high school’s father reads my blog.  Being the child of older parents he was young, hip, and liberal compared to my high school self’s almost 60 year old parents. He was the single father raising two daughters alone at a time when that was rare.   When I was 17 years old and was trying to have sex and stay childfree he would allow his daughter to hold my birth control pills.  He let me keep them at his house when my parents found mine and freaked out.  They had not been teenagers since the 1940′s and had no clue what to do with a kid in the 1980′s.  I am so glad A is back in my life via FB and he is an avid read of my blog.  I have grown up to mirror many of his beliefs and I love we are now friends.

He left the following message on FB in response to my last post:

It is so great to know someone who can spend so much time with her children, and seem to enjoy all of it. And, you are a great writer, too.

Happy Birthday Aaron, and be sure to appreciate your mom…

Love ya,

A

I laughed out loud.  I kept thinking where was he when I wrote this, this, and this.  This is a quick sampling of so many posts where I was over come with anguish of having two active boys, so close in age,  with special needs.  I have to admit six has been an amazing year for Ryan.  He has been forced by his issues to have a maturity his friends do not have. He knows there are meds that can help him but he insists he does not want them.  He knows they have possible side effects but he chooses to learn another way. I am so proud to be riding this utopian wave with the boys and their needs but I have to be ever villigent for the other shoe to drop.  This is only the first round.  ADHD and Food Allergies 0 – Us 1.

18
May
10

Different Learners

Someone on twitter posted a link about this interview today.

I listened to this interview with Dr.  Jane Healy Ph. D. I really want to get her new book called, Different Learners: Identifying, Preventing and Treating your Child’s Learning Problems.  I related to her so much.  She comes from the stance that all kids brains are wired differently. Whether a development problem becomes a disability and if medication is needed depends on its severity and expectations made of a child at a given age.  The interview talked about expecting so much from kids academically at an early age and how kindergarten girls are at a much different developmental place than the boys. Every topic she spoke about had me riveted.  It was obvious that she was not a fan of the no child left behind act.

I found her words down to earth, practical, and comforting. With the ADHD diagnoses comes with the alarms of get medical help or your kid will fail, without meds your child is doomed to prison, and do something now while your child is young or it will be too late.    It was so nice to hear that for once ADHD does not have to mean broken, it could mean just different.  I can’t wait to hear her tips on helping a child after diagnosis.

27
Apr
10

Bad ADHD Days

The last few days have been bad for ADHD in our house.  Ryan has been tough to be around.  We went to the pool Sunday with Cecily and Tori and he was ignoring boundaries more than he has lately, grabbing toys, and he was generally hard to be with.   After he swam a bunch of laps he was easier to handle and he was very good at Whole Foods.

School this week has been a huge back slide. His class has a green, yellow, and red behavior chart.  Ryan has had yellows or reds everyday since Friday.  This is his worst behavior of the school year.  He has been tough to have at home and hard to have out of the house.  He has not exhibited this behavior so consistently in over a year. I have no clue what is going on.  He is eating well, running around outside, going to bed on time, all things that are usually Ryan behavior triggers.  I have been sad about it, feeling overwhelmed,  and mourning normalcy, and started to wonder what I have done wrong lately.

The universe speaks back.  I found this amazing blog.  As I read post after post and comment after comment I discovered that for the first time I am not alone in ADHD hell.  There are other parents emotionally and physically exhausted by ADHD parenting, the schedules, the social issues, the behavior, just all of it.  One post, a guest blogger, talked about “the schedule” and deviating from “the schedule” and it’s behavioral consequences. I wept. Most of the people on the blog use medication for their kids but most also did everything they could before resorting to medication.  Many went to OT and behavior modification like we have.  They all were not expecting a magic bullet with meds but were doing the best they could for their kid.

As I started thinking about meds again for Ryan an email from an old friend popped up about  this book. My friend is someone I looked to as a motherly figure for a long time although she is only a few years older than I am. Then on facebook she posted about mADD man.  Someone posted on her thread about this book, called Teaching the Restless: One School’s Remarkable No-Ritalin Approach to Helping Children Learn and Succeed. I came away with a renewed resolve and two new books to read.  Glad my friends are witchy.

Back to music tomorrow.

25
Mar
10

He Knocked the Ball Out of the Park

Off we went to the report card meeting.  I felt awful.  I got some gastrointestinal bug and I had been limping through the day. When the time came to go to the conference my husband and I dropped Ryan off at the sitters house where Aaron was already.  The sitter said Ryan arrived uneasy but after a bit started playing.  I was nervous.  The last report card meeting was shocking.  Ryan had gotten “Not Satisfactory” in almost 85% of the 37 categories. He was fighting the teacher on everything she was trying to get him to do.  He was doing some of the work and he knew the academics but things were not going well.

The conferences are held in alphabetical order and Ryan’s last name has us coming in last.  We arrived and the teacher had two people ahead of us. When she saw us waiting she wanted to hand us his report card before we went in.  She said, I think you both will be nicely surprised.  WOW! HOLY SHIT!  Now 35 of the 37 categories were now Satisfactory. As my husband and I  reviewed the report card in the hallway I had to cry. I cried relief because everything we have done for Ryan is not in vain.  The report card is proof that he can change and will change, with love and support.  It made the super human long days, all the therapies, worry, and schedules worth it.

When we spoke with the teacher she was really supportive of Ryan.  She told us she was extremely excited with his progress.  She felt that ADHD meds are a bad idea for Ryan because he can do exactly what he needs to do if you give him time to adjust. She then spoke with us about first grade, and what teacher she’d like to recommend for him.  I appreciated what she had to say and I was so glad she is looking out for his future.

I know we will have other challenges with Ryan someday but for one night I am going to stop worrying.  I am going to feel content and happy in this win. This is not just Ryan’s win it is a family win.  We all took part in helping Ryan, even Aaron who attended behavior modification therapy with us at times and calls Ryan on his behavior.  Although before I go to bed I have to go read the report card again and marvel in everything that boy is and can be.




 

May 2012
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