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: