Speech issues:

I am reading a book called THE LATE TALKER, I have not gotten too far into the book yet... but I have learned a lot about Speech Disorders. Unfortunately, I am beginning to believe that Jilly was dealing with a Speech Disorder, long before her Stroke...
Jilly was born with a cleft palate, so she qualified for speech therapy through Early Intervention... immediately. She started therapy at a very young age, but did not progress very well, in her first 14mo. prior to her stroke.
Jilly was born with severe hypotonia, BUT, due to her multiple birth defects... mainly her heart defect HLHS, and her Cleft Palate, ALONG with the fact that Jilly was born in, an out-of-state hospital to biological parents who did not participate, neglected her, did not forward her medical records to their home town doctors, and basically abandoned her... the diagnosis of severe hypotonia did not follow her to our local town, where I first met Jilliann at 5wks. old.
When I met Jilly, the only diagnosis's that we had, were the HLHS and CLEFT PALATE... I also noticed that she had a recessed jaw, and inquired... I was told, that she obviously has an issue with the jaw called Micrognathia, meaning shortened jaw bones. I was told that this is something that some are born with, and that the jaw bones are the last bones in the face to fully grow... therefore, it is not until the age of about 18yrs. old, that a plastic surgeon would consider fixing and extending the jaw bones, if desired. Although Jilliann's micrognathia was quite noticable, I was told that there were more severe cases, that cause difficulty with breathing... and those cases sometimes require surgery or traching to deal with the breathing issues... but that it was not suspected that Jilliann's was this severe. Jilliann did have rather low oxygen levels, even for a HLHS baby... it was discussed that possibly, the low oxygen levels were somewhat effected by the Micrognathia, but not likely. Jilliann has also, always struggled with lower oxygen levels while laying down or sleeping, some babies with Micrognathia have issues with their tongue being positioned too far back in their throat, and, as they fall asleep and the tongue relaxes, it can fall back in the throat and partially block the airway, but that too... was questioned, but not suspected to be the cause, of her low oxygen levels... it was thought more so, to be a heart issue. I was told that she was just one of those babies, that was effected positionally... when it came to her heart function and blood flow to the pulmonary artery on the left side (which is highly compressed by a severely bulging Aorta... due to the stretching of the Aorta and Gortex patch, that was used to enlarge her severally underdeveloped Aorta). I also questioned a syndrome that I was aware of, Pierre Robin Syndrome... which consists of the Cleft Palate AND the Micrognathia, but I never got a definitive answer on whether Jilliann was considered to have this syndrome.
I spent the rest of her first year, on a quest to get more information, on what exactly was noticed/diagnosed, at birth... after much searching, along with the fact that a neurologist was called in, during her 6mo. heart surgery recovery... due to the fact that Jilly was not recovering well, not responding to pain meds. or sedation, and we were not able to calm her for several weeks after the surgery... much beyond the normal recovery period. It was then, that I was asked if Jilliann was diagnosed at birth with Hypotonia. Not being her birth parent, and not knowing if there was any diagnosis of this, at birth... we started searching for her birth records and sure enough... her very first exam after birth, stated: FLOPPY BABY. This term, is used for babies lacking the normal muscle tone. While talking with the neurologist, and discussing what we had noticed since the time that we had known Jilliann... it became a definite diagnosis that Jilliann was in fact, born with severe Hypotonia... these children are very floppy, as if you are carrying a wet noodle/a rag doll/ a sleeping child who does not resist the pull of gravity on their body. I had no idea, what this diagnosis meant... the Neurologist also did an ultrasound of Jilly's muscles... it was confirmed that Jilly had abnormal muscle mass. It was explained to me, to imagine the muscle as many many little strings all tightly tied together... leaving very little gaping... hypotonia is caused by muscles that do not have this tight weave of strings.... there are gaps, and therefore the muscles are not as dense and not as effective at their job. One thing I was not told, is that this does not mean that the muscle, necessarily is weak. Tone and Strength are two different things... I did not know this though.
So, due to the hypotonia (low tone)... I was told that babies do not recover as well after surgeries... it was recommended, to put Jilly on something to calm her brain, and that would help her recover better. Jilliann was put on Phenobarbitol, for this purpose... and it did seem to do the trick. Eventually, Jilly was able to calm down, relax, and sleep... and that was when her body was able to heal and recover. Once things improved, she was slowly weaned off of the Phenobarb., and once finished... she was able to go home. It was a very long month of hospitalization, recovering from her second open heart surgery. I also, found in her hospital records, that she experienced the same type of delayed recovery in the first 4wks. of life... now explained by this "HYPOTONIA".
What I am learning from this book I am reading, is that Hypotonia can play a big part in Speech Disorders... it was assumed that Jilly's "SPEECH DELAY" in her first year of life, was only due to her Cleft Palate... as no one really knew or understood the complexity of the diagnosis: Hypotonia. I am also learning from this book, that studies have proven that Speech Disorders can be hereditary. I am aware that one of Jilly's birth parents, was diagnosed with significant learning disorders in school, and received special education services, until dropping out of high school... One thing, I want to clarify is: Speech Disorders, do not mean that the person is cognitively delayed... in fact, it has been proven recently... that a large amount of people diagnosed with Speech Disorders... are advanced in their receptive abilities, meaning that they completely understand what is being said to them, and know exactly what they want to say... they just cannot verbalize, their knowledge. Unfortunately, it is common to be misdiagnosed as cognitively impaired... even to the point of being labeled as "retarded". And some, with Speech disorders have been diagnosed as Autistic... only because the child was not able to express himself verbally.
I have also noticed, that some of Jilliann's biological relatives, have very noticeable speech "issues", but I do not know their diagnosis's. What I am trying to express... is that there are many reasons, that a child does not talk... sadly, a lot of these issues are overlooked by doctors. What may be a SPEECH DISORDER, could just be diagnosed as a SPEECH DELAY; and there seems to be a major difference between the two! This book, is explaining those differences... in hopes of educating the reader... who commonly is the mother, that spends the most time with the child and may notice signs of a "DISORDER"... that possibly, no one else may notice.
I think that a big problem in getting the correct diagnosis... is that not everyone has ALL the pieces of the puzzle. It is a result of having TWO, wonderful speech therapists throughout Jilliann's life... and reading this book; that I feel as though, I have just realized how all of the pieces of Jilliann's puzzle... fit together.
The first two chapters of this book, were VERY depressing to read... they focused on the results, of how horribly the child will be effected by undiagnosed SPEECH DISORDERS. It didn't really even say "undiagnosed"... it just said many statistics, of how SPEECH DISORDERS can ruin a child's life... and that the results would be an adult that is not able to function in society or have friends. It even went on to say... that the likelihood of the child growing up and ending up in prison or worse yet... committing suicide is what to expect. I felt a bit angry, thinking that they were saying that there is no hope for a child with a true SPEECH DISORDER. But, I am willing to accept, that what the authors are trying to bring out... is the importance of a correct diagnosis.
So many parents, are not willing to accept when their child is 1,2,or 3 yrs. old... that they may have a issue, and that they may need some speech therapy. No parent, wishes to have their child diagnosed with a problem/delay/ or worse yet... a DISORDER!!! We do not want our child, to start out life... with a LABEL!!! Therefore, many parents who see signs of trouble... will not search out help. Or, they do inquire... and are told by others including doctors; that their child will catch up, and not to worry about it.
The book is trying to reach those people that may be in denial. Basically, it is trying to scare people into taking action. I personally, felt that it was a bit brutal... and for someone reading the book, who is already aware that there is a definite problem with severe speech delay... it was almost a bit hurtful, making the parent feel as there is "no hope" for a child who truly has a SPEECH DISORDER; to ever have a successful life. If, I had not already accepted, that Jilly has a serious issue with her speech... I do believe, that I would of quit reading the book after the first two chapters... and thrown the book away! BUT, because I have accepted that Jilly is going to have a difficult road, when it comes to speech.... I felt that I owed it to her, to continue reading this book... in hopes to educate myself in any way possible... if just one sentence in this book, can help Jilly... then I am willing to read it!!! Chapter two ends, by saying: "There is nothing to be lost and everything to be gained from early therapy. Perhaps your child is a late bloomer and will catch up with his peers. On the other hand, he may not have a speech delay but a speech disorder, and by obtaining therapy you will have gained a vital time advantage. You need to be prepared if this is the situation. In the next chapter, therefore, we outline the specific speech disorders. We tell you what is known about their origins and how to identify them. As a parent you are more familiar with your child than anyone and need to be armed with this information so that, if necessary, you can take appropriate action."
That being said... I did continue reading the book and have now completed chapter 3. It was this chapter... that I have learned the most from! I am glad, that I went on... I do think this book has a lot to teach me... and I hope, that it not only helps me come up with the correct diagnosis for my little girl... but will also give me great HOPE, of how early therapy/treatment WILL PREVENT the awful outcomes that chapter 2 spoke of !!!
I will have to stop here for tonight... but stay tuned, as I read through this book! I am hoping, that by educating myself on SPEECH ISSUES, I will be able to educate others... I could not be the only person looking for answers, on diagnosis and treatment. And, I will not be the last... YOU may be just starting out, maybe with your newborn baby who has yet to create their pieces of the puzzle! Knowing from the start, what I am learning 3yrs. down the road... may prevent the questions that I have struggled to answer! Nothing would make me happier, than to help someone know what to look for as it is happening... know what questions to ask... and know where to find the answers to those questions!!!