Keepin' Busy...

I am going to post multiple pictures and happenings in this one post because I am pretty far behind on blogging. The kids have all been going in opposite directions for different things and all I can do is smile and get them where they need to go...HA!

They have been skiing a lot. It has been a great ski season for everyone. It is still going strong too, but we know that it will also be ending before too long. Spring has arrived and that's always a sign that the resorts will be closing as the snow melts away. 

Lilly has been doing dance now since January and goes to every single class so that she can be in the up-coming spring recital . She is very, very excited...just ask her (0:

I am very proud of her for sticking with ballet. It has had a few challenges with her CAPD issues, but she has worked really hard and figured out how to make it work for herself. I can't wait to see her dance! We don't get to watch them during class time, so I haven't been able to see what she does in class...other than all the dancing/practicing she does around here and in the middle of the store while I am shopping!

Mac has been working hard on his school studies and is getting ready for track season. It starts on April 2nd. We have been contemplating on letting him participate this year because, as most of you know, both he and Lilly attend OTPA (charter school) and they do not have any sports teams and also get out of school an hour later than the other schools in our district. We were told from the very beginning of this school opening/starting that our kids would have the same access to all after school extra-curricular activities that other students in the district have. It wasn't going to be an issue for us personally until Mac reached the middle school years...Mac started at OTPA in the 4th grade. I asked every year how the school was going to accommodate him and other students that wanted to join the other students. I was told not to worry about it and things were in the works, it wasn't going to be any problem...etc. There were discussions of a possible time change for the middle year students or moving PE to the last period of the day, so kids that were on sports teams could leave an hour early to get to practices on time and it would count as their PE credit...and a few other ideas. Well, I should have pushed harder I guess for more exact answers and a better time-line, because I was shocked (as well as many other parents) by what choice was given to us as the time clicked on and on and was running out for Mac and his 6th grade class-mates. We went to a middle years info night a few weeks ago and felt like we had gotten a HUGE slap in the face!!! I was so shocked and so furious...by the time we left. The first big shocker was that they told us the school was no longer going to be a K-8th grade IB program, where students learn the IB curriculum through middle school years and then go to Sandy High School, where they could continue their IB classes and graduate with an IB certificate or an IB diploma. The school was NOW going to be a  K-12 IB school/program and our kids would not be able to go to Sandy High School to continue their IB focus. If they want to graduate with an IB certificate or diploma, they would have to stay at OTPA all the way through. (I could go on and on about why a lot of us disgaree with this, but I won't right now) We were also told that start times for the next school year would not be changing for any of the grades and that PE would not be the last class of the day for the MYP. If we (as parents) felt that it was important enough for our kids to participate in extracurricular sports, or other activities, we would need to check them out of school an hour early each day that was needed and they would be missing their advisory period and would have to make it up. WHAT??? REALLY??? Why in the hell should there be a consequence for students that are choosing to be part of a team, or better themselves, or make friends that go to other schools in the same district, to be a bigger part of the community they live in?? I was FURIOUS...for a number of reasons. I was blatantly lied too about a lot of the things I inquired about and that is beyond wrong. I was also furious that they seemed to only care about IB curriculum and nothing else, but yet when asked how changing the hours of the school would affect or change the mission of the school or interfere with any IB rules/regulations, they admitted that it would not. I think the IB curriculum is a great way to go if your child can do it...but curriculum alone does not make a well-rounded student or individual. There are many life long lessons that are taught outside of a classroom and not in a book. Kids need a balance of both and anyone in education should acknowledge this no matter what their personal opinion is about certain extra-curricular activities! Well, those of you that know me...can guess what happen next. I went on an info seeking, interviewing and somewhat fighting stampede. I called OSAA, I called the High School principal, the other middle school principals, teachers, coaches in our school district and yes, of course board members. I called every single parent that I knew and didn't know. I posted things on FB, went to a gazillion different meetings and spoke up and fought for a time change for next year and also voiced my concerns about why our kids should have access to all these great programs our district has for ALL Oregon Trail District students and how NO student should be denied access to them or have to miss class time in order to do so...how could that be the only choice, especially if academics and attendance are SO very important!! Believe me, I could go on and on...and our board got an ear-full from me. I did feel a bit bad about how "gruff" I may have come across, but they needed to have a very clear picture of where I was coming from. I had been asking about this issue for years and had been told by our director (principal) that it wasn't going to be a problem...I had been pushed in a corner and felt that approaching the board with everything was the only choice I had left to advocate for my son and daughter. Many other parents felt the same way and some voiced it as well and others chose to sit and watch...which is fine too. We all have our ways- anyhow, it paid off. Last week the board voted that the hours for ALL GRADES for the next school year and forward would change to match the other schools so that our kids could make it to practices, etc on time! I was sooooo happy! I was soooo happy that they just listened to us and gave it some real thought and consideration. Yes, I most definitely stepped on some toes and ticked a few people off, but I don't think their hearts are in the right place on some of these issues and in my opinion...they needed to know that just because they say "this is how it's going to be" doesn't make it so. Especially without really discussing the issue or even letting parents know what's going on. Our school is small in size and most of the parents really, really care about what's happening and that needs to be honored with discussions and feedback on any issues that effect our kids. I hope that in the future, better communication is practiced. I think everyone involved in this latest "dilemma" learned something. I have no idea what's going to happen with the IB curriculum and being able to have IB classes at Sandy High, but I do know that now more parents are aware of it and our director, board members and district are going to have to listen and take parents input to heart when big decisions are made. It's very clear that most parents have a very clear opinion about it. I am just glad that everyone is at-least in the "know" and discussing it now! 

As far as this year goes for Mac, I feel that he has been let down. The time change didn't happen fast enough for him, but because he is such a great student and his teacher has kindly offered to meet with all the track students an hour early once a week before school starts to teach them what they will miss in class- we have decided to let him be on the track team at Cedar Ridge. This means I have to pick him up an hour early Mon-Fri in order to have him at the field on time for practices and he may have to leave earlier on some days for the track meets. It is an UN-necessary consequence for him. He has great grades and is a great student, he should not have to miss any class time just to make it to practice on time. I am glad that we have this remedied for the future.

UGH...enough about school...between all this school stuff and all the things going on with Griff, (see earlier post) I can honestly say that my brain is tired. LOL!!

We have been having fun during all of this and actually we never let the kids know what all was happening at school until it was over. I want them to be happy and proud of where they go to school and they are just that. I don't want them to ever be worried about where they go to learn and grow, so we were very careful about what we discussed if they were in ear-shot.

Here are just a few of the things we have been up too-

Lilly has been wearing and modeling all her cute hairbands, hats and scarfs from Crochet Craziness! Our friend, Lisa makes them. You can check out her great stuff on FB under the name Crochet Craziness (0:

 Griff only has interest in Mac's favorite hat...

 Lilly made an awesome Leprechaun Trap to take to school...

 The trap needed to some how trap the leprechaun, but make sure to not harm him in anyway. This was Lilly's idea for it- She would "entice" him to enter the house with some of his favorite things...gold, candy, a huge flat screen TV with Barbie playing (we all know he has a crush on Barbie) and a nice comfy chair for him to sit in. She put clear/invisible tape on the chair so that he would get stuck to it as he sat down to eat all his yummy candy and watch some TV. It was a very clever idea and he did indeed stay awhile and ate all the candy...but he somehow freed himself from the tape. He did leave Lilly a note and wished her better luck next year! I can't wait to see what she comes up with next go around...

 Last week was buzzing with all kinds of excitement for spring break and other events going on. One was Catie Lynn's Birthday! 

 Happy 5th Birthday!

I love the picture below because both girls are SOO excited about the gift Catie Lynn opened, and all the boys are completely oblivious to it...

 Griff and Brewer enjoyed playing together and eating lots of cake-

It was great to see everyone, it has been awhile since we have all gotten together. We even got to do "face-time" with Sydney! We miss her!

The first few days of spring are always a bit wild when it comes to the weather around here. We have rain, snow, sun and hail. This looks like snow, but it's hail and of course Mac had to go out and jump in it until the pelting hurt. 

We are now officially on Spring Break and have plans to go and do different things, but now some of the plans may get changed...but no matter what we end up doing, we will have a great time! I can't believe how early Easter is this year! We are having a hard time deciding to go away and miss the holiday with family...but, I am sure whatever we decide will work out. April is coming all too fast...for me it means Lilly's birthday is right around the corner. Yikes, she is going to be 8 already. Wow...

well, gonna log off now. Thanks for reading and make sure to catch up on the latest update for Griff. It's long and has a lot of info, but it's there for those of you that are interested.

Ta-Ta for now...

More Griff Info-

Hey All,

I have been MIA on here for a while just because we have been going and going. I have been to all kinds of appointments, evaluations and meetings about what the best solution for Griff is going to be. He had speech and occupational evaluations at Neurotherapeutic Pediatric Therapies in February that were very helpful in determining maybe what was happening with his communication, etc. In early March, he had more evals done by Clackamas ESD and in early April he will have another, more in depth OT eval, at Play2Grow by a highly trained, well reputable OT in the state. She will also start seeing him once a week to help with all of the sensory issues he is having. I feel blessed that we have been able to connect with so many different people with such specialty backgrounds in speech apraxia and in OT therapy. Griff has a form of limb apraxia, which is all motor planning. He has all the knowledge of speech in his brain, but can't do the motor planning to get it all out. So, to help him with this learning process, he is seeing a speech pathologist twice a week and will also be starting a therapy pre-school group on April 8th. He will go there two days a week and get to learn and work on all sorts of things with other kids that have some of the same issues that he has. I feel like we are making process on the apraxia. I know we have a long road ahead of us, but Pat and I can both already see some very positive and encouraging changes in Griff. He even seems "relieved" that we understand what's going on and that we are helping him. We are learning about all different forms of communication and are figuring out what works best for him. We are using picture communication systems all over our house. The picture boards help in getting his needs met, when he can't get the words out. It definitely helps ease some of his frustration. Kids with apraxia cannot speak words on command or under pressure or stress...because their brains cannot get the message through all the necessary channels in time. Again, apraxia is a speech disorder that interferes with a child's ability to correctly pronounce sounds, syllables and words. It is the loss of ability to consistently position the articulators (face, tongue, lips, jaw) for the production of speech sounds and for sequencing those sounds into syllables or words. Generally, there is nothing wrong with the muscles themselves. The child does not have difficulty with non-speech activities performed with the muscles such as coughing, chewing or swallowing. (this is Griff exactly)

However, the area of the brain that tells the muscles how to move and what to do to make a particular sound or series of sounds is damaged or not fully developed. This makes retrieving the "motor plan" for saying a word difficult.

As a result, even though Griff knows what he wants to say, he cannot say it correctly at that particular time. Sometimes he cannot even begin. Either the wrong sound comes out, or many sounds are left out all together. At this moment/time, the motor plan is not accessible. These errors are not under his voluntary control so he often cannot correct them, even when trying his hardest. Frequently, he will be able to produce a sound or word at one time and not be able to say it again when he wants to. I hear words when he is playing alone or having a lot of fun and even when he is angry, but when asked to say the same word, he can't. It is very frustrating for him and for us. He resorts to things/behaviors that we really wish would "go away"...screaming, being aggressive and all out tantrums just out of pure frustration. The challenge for us during this time is to not come down on him so hard about being "bad", but instead try to turn his frustrations around. In other words, he is not a bad kid and he is not throwing a fit, just to throw a fit. He is actually very sweet and plays with others pretty well...but he has some challenging days. I am BEYOND tired of people staring at us in public when he is having a meltdown because he can't figure out how to tell me what he wants/needs or that his is just flat out over-stimulated...which brings me to our next issue. From the very beginning of all of this "seeking out help/answers" for Griff, we have been told that he is a sensory kid and/or a sensory seeking kid. Wow...talk about a foreign language to me. Sensory issues can mean literally 100's of different things and just as many complex diagnosis. It makes sense that kids who have apraxia would have some sensory issues, but they are all very different and require very different and individualized treatments/therapies. Because this is so complex, we have decided it best to NOT LOOK for a diagnosis, but rather to treat what's going on now in order to help Griff get from point A to point B and then to Point C. He needs a lot of support, a lot of encouragement and a dedicated team. We got all of this covered, so we are going to just move forward with him as best we can and cross whatever bridges need crossed together. We are not sure if he has more of a sensory integration type disorder or a sensory disintegration type disorder, or even a central nervous system disorder- but it is clear that he is struggling with symptoms of both. What causes it? I don't think there is a clear answer to this, but studies show that apraxia and sensory issues are a neurologically based disorder. It is caused by subtle brain impairment or malfunctioning. No one currently knows exactly what this brain impairment is or what causes it. Theories range from supposing the impairment is a very specific small injury or difference in the speech area of the brain to saying that is a very diffuse change that is not possible to isolate.

Although some children have had specific birth or prenatal injuries or periods without oxygen, most children have nothing in their birth or prenatal histories that would suggest a possible cause. It is interesting that there are a great deal of similarities in the histories of children with apraxia and sensory issues, but at this time, they simply do not know what the exact cause is. I do not think or believe that it's a coincidence that I have two kids that have speech problems. Lilly has improved dramatically and no longer needs speech in school, but she does have auditory processing issues, which are totally different from sensory issues...but I still think there has to be a connection somewhere.

So, we are "front-loading" Griff with anything and everything to help him get through this tough time of communication and sensory stuff. If it seems like we are over-loading him, we will back off a bit. My intuition is that we are doing and giving him what he needs...yes, it is at a cost on many different levels, but we are his parents and it's our job to help him. I am really, really hoping and have been encouraged that by doing all of this early intervention and therapy we may just fight off a diagnosis of ADHD or Autism. I will hope and pray that we don't have that to deal with down the road, but know that whatever happens, we will do everything possible to help him. He is very smart...he surprises every doctor and therapist that he sees. So, all we need to do is channel it all in a positive direction for him. 

Pat and I have times that we are just exhausted by all the information, appt's, etc...but we know there is a light at the end of the tunnel and that every storm cloud runs out of rain. Thank goodness we have each other to lean on, as well as, many friends, family and faith to help us out. Please keep Griff and his "team" in your thoughts and prayers as we navigate our way through all of this.

Thanks!

Oh My Goodness...

Oh my...is it really March? Wow...we have been slammed here in The Potter Home and I am definitely behind with my blogging.

I guess I will start with Griff. Our fun, crazy, high energy, stubborn...but very loving lil' guy that keeps all of us on the run all of the time. I know a lot of you love our Griff stories and we love them too. They make for great laughs and great memories!! 

We have been concerned about how "wild" he is and the fact that he is now 3 and just basically stopped talking...he never talked in full sentences, but at a year old, and even two years old, he was saying basic words that showed he was meeting the correct "milestones" that the pediatricians want to see a child meeting. I can't really pinpoint the exact time that he stopped saying words and turned to all-out screaming out of frustration to try to communicate, but it happened and before we knew it, he was so mad, so frustrated and so upset that he could not tell us what he wanted/needed. I was thinking (maybe more hoping) that he just had a speech delay and that in time he would start talking again...but it became apparent that something more was happening. It has been a long journey. The screaming and fits have been very trying for all of us and have made for some very long days, weeks, months. His temperament was changing and even his diet was taking a bad turn. He barely eats at all right now. Pat and I tried all kinds of things and I read and researched a million different ideas and just felt lost as to how to help him, so it was time to turn it over to the pediatrician and see if she could help us. We also had a dear friend (thanks Elyse) refer us to a speech pathologist, whom has become an angel and blessing to us!

We took Griff to Neurotherapeutic Pediatric Therapies for a speech evaluation and a full OT evaluation. I could tell right away that this facility was equipped to help Griff. It was pretty amazing. He has been diagnosed with a form of Apraxia, also called CAS. It is a motor speech disorder that first becomes apparent as a young child is learning speech. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.  Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia.  No matter what name is used, the most important concept is the root word “praxis.” Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements.  Apraxia of speech is a specific speech disorder.  This difficulty in planning speech movements is the hallmark or “signature” of childhood apraxia of speech.

The challenge and difficulty that children with apraxia have in creating speech can seem very perplexing to parents, especially when they observe the skill of learning to speak developing seemingly without effort in other children. 

The act of speech begins with an intention to communicate.  Next, an idea forms, outlining what the speaker wants to say.  The words for the desired message are put in the correct order, using the correct grammar.

The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly pronounced. Finally, the muscles themselves must work properly with enough strength and muscle tone to perform the movements needed for speech.  Amazingly, all of this happens in the blink of an eye.

When speech is developing in a normal way, children make word attempts and get feedback from people around them and from their own internal sensory systems regarding how “well” the words they produced matched the ones that they wanted to produce.  Children use this information the next time they attempt the words and essentially are able to “learn from experience.”  Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic and less effortful.  The child doesn’t have to think about how to say the word or phrase they want to say. At this point, speech motor plans and programs are stored in the brain and can be quickly accessed and put together effortlessly when they are needed.  Children with apraxia of speech have the most difficulty in this aspect of speech.  It is believed that children with CAS may not be able to form or reliably access speech motor plans and programs or that these plans and programs are faulty for some reason.  Unlike children developing typical speech, speech motor plans and programs for children with CAS fail to become automatic and easily accessed when they wish to speak.

Recent research also suggests that, to some degree or another, the sensory feedback loops needed for learning and acquiring accurate speech may not work well in children with apraxia of speech.  There are several forms of feedback children use to learn speech and the complex series of movements underlying it.  First, children use auditory information (through their hearing system) to judge whether their word attempt was correct.   Researchers believe that the child’s speech processing system “couples” (or ties together) an auditory event – what they hear themselves say – with the movements of the oral structures needed to produce an utterance.  Secondly, sensory feedback called proprioception is used so that the child knows where speech structures like lips, jaw, tongue, palate are physically located and how they relate spatially to one another during speech movement.  So, for example, during speech attempts the child may not be aware of where their tongue is within the oral cavity or how its position relates to other structures like the lips.  Sensory feedback is especially important during the learning of motor plans such as in early speech learning or speech acquisition.  If these two feedback mechanisms are not working properly, speech intelligibility is affected.

This is just a basic outline of what CAS is, if you want more info- click here  http://www.apraxia-kids.org/guides/slp-start-guide/

As with most speech disorders, every kid is different and their treatments are different. Griff is going to speech sessions twice a week now and we are already seeing a good improvement. We are still awaiting the results of his OT evaluation. We have talked with the OT specialists and he has had a few sessions with them as well. We agree that he has some sensory issues, but feel that those will improve greatly once he is able to communicate better with everyone. The speech therapy and OT therapy is very expensive...so we decided to just go with the speech therapy for now and really think the sensory stuff will fall into place. I also feel that I can give him plenty of sensory input/therapy at home and so far, it has been going OK so far. I hope that we are spot on about the sensory issues improving with his speech. I guess if we are wrong, he can begin OT sessions after he completes all the speech he needs. I also called this week and have him being evaluated by Early Childhood Services through the school district/county to see what their opinion is and what services they may have to help him. It is really a lot of work and trying at times for all of us, so please keep us in your thoughts and prayers. We will do whatever it takes to get him on track. It's baffling to me that we have two kids that have sensory and speech issues. Lilly had to have speech early on and we are awaiting the final part of her CAPD (central auditory processing disorder) testing upon her 8th birthday. If you need to re-cap or catch up on what we had to do with her, click here- http://potterluv.blogspot.com/search?q=CAPD

She turns 8 in April and will be going back to OHSU to complete her testing. I wish I knew why we have two kids with speech and sensory issues! It really bothers me. I know they will both be fine, in fact, Lilly has already far surpassed many of the obstacles that she has faced with her hearing/processing issues. Yes, it takes work, but she is scooting right a long. She is doing great in school, has lots of friends, is outgoing and healthy. You can tell that some days are harder for her to focus and that she is struggling to process certain things, but she always tries and that's all we can ask of her. Dance/Ballet has been a great benefit to her. She has to focus hard to follow the beats, rhythms and do the moves on time. I know she will not be happy about having to go back to OHSU in April, but it's the last phase of testing in this long journey...we have been doing this since she was two!

I know there are way worse things out there that can happen to kids and I am grateful that they are healthy and happy. We make the best of every day, make lots of fun memories, provide them with consistent learning experiences and stability and lots of LOVE....so in the end, it will all be OK. I just sometimes get lost in the craziness and hectic times that are avoidable on some days.

On another note- there has been a lot happening with the kids' school. It is a fairly new school and an IB charter school that we are very involved in. We had discussions and forums recently to decide if the school was going to make school uniforms a standard. We were against them and of course showed up at every meeting and every forum to voice our opinions. Mac even wrote his own speech and got up in front of everyone to voice his opinion. it was really cool to see him do this. Anyhow, in the end, the district board decided against them. The school was pretty divided. Votes were very close and I was so relieved when it went our way. We just felt that they were not needed or the right fit for our school. It's not that I totally oppose the idea of uniforms, but our school has none of the issues that other schools have had, so we felt like it was an UN-neccesary change/restriction. I did a ton of research on it and called and emailed other charter schools in Oregon, California, Arizona, Texas and even New Mexico. I think in the end, it paid of and informed others about why some schools decided to implement them. I felt like a thousand pounds had been lifted off my shoulders after the whole thing was over.....BUT little did I know, we had another issue creeping upon us and it was a biggie. It involves the MYP (middle years program). I don't even have the energy to get into details right now, but it is flat out maddening and the complete opposite of what they have been telling us was going to happen for our kids. I do not understand why we have to constantly be baby-sitting or debating or fighting for what is best educationally for our kids. It is common sense what works and what doesn't and every educator knows this and if they don't, then they need to get the hell out of the education system and go take a class in common sense...........ahhhhhhhhhhh! I am frustrated, if you can't tell! So, in my "free time", LOL, I am researching, calling, interviewing, discussing, etc how to try to make sure certain things are available to my kids and that they are getting the best education as well. It's all a bit ridiculous, there is too much red tape, politics, ego's and plain B.S. going on within school districts right now. I am tired, but not too tired to fight it. So, stay tuned for more info!

Well, I think it's time to log off. Pat and I are going away for 3 days alone later this week...very much needed! Momma B will be watching and caring for the kiddo's. It can't get here fast enough.

God Bless and thanks for reading (0: