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!