On The Road Again

Evidentally I've gotten across to the preschool speech therapist that I'm serious about Alex's therapies. She wrote me a note today and put it in Alex's backpack to take home. You have to understand that for six weeks into this program, he's not had any one-on-one therapy and no progress reports of any kind. She said she worked with him today on his oral motor skills one-on-one and also in a group setting. She described everything she did with him so that I could continue with him at home. Who knew a lollipop was such a wonderful tool for oral motor therapy!? She is trying to get him to have more of an awareness of his oral structures. This will aid in his speech and language development. I'm glad that's he's finally getting this type of therapy, but he's suppose to be getting SPEECH (articulation) therapy as well, which he is not getting. So, at this point it looks like we need to continue pursuing private therapy. I would love for Alex to continue going to the developmental preschool and have one-on-one private speech therapy a couple of times a week as well. The developmental behavorial pediatric's office that I visited the other day (the one that's closing) called me and recommended a developmental clinic for us to go for Alex's diagnosis and treatment. They actually do therapies there at the center. If they could get us insurance coverage with a diagnosis, we could get private therapies there and Alex could stay in his preschool as well. Only thing is it's almost an hour away, but we'll do what we have to do. I called to schedule an appointment and had to leave my personal information about Alex so they could mail us an information packet to fill out that we bring with us to our first appointment. I feel like we're back "on the road again" in the right direction! Beware brick walls! I'm encouraged today, and I'm feeling a little more confident about what I'm already doing at home with Alex. We'll get there...

Mama's Boy

I love this picture!

ESY for Summer

I cannot believe it was as easy as talking to the right person. I shared my concerns with Alex's new speech therapist about the extended school year (ESY) during the summer yesterday as we talked on the phone. As I have mentioned before, I have gotten a "no way" all the way about getting Alex ESY services this summer, but I hadn't talked to the speech therapist about it until yesterday. When I picked Alex up from school just now his speech therapist was there and she said she checked on ESY for Alex and there should be no problem with him getting therapy during the summer since she now gave him a referral. She said he may even be able to go to their preschool program in addition to getting therapy. WOW! I asked her what I needed to do at this point, and she said she would take care of everything. I was so exhausted over this whole thing, but I'm so glad I kept pursuing it. I mean, if I don't fight for Alex, who will? Maybe we've just gotten off to a rough start. Hopefully this will be a turning point for us to get going in the right direction for Alex's therapies. There's still so many decisions to make and this journey isn't easy. I wasn't prepared for this as a parent. Nonetheless, I feel so blessed to be mom to such a precious child as Alex.

Those Darned Brick Walls

I seem to keep running into them. I continue to ride this roller coaster of emotions as apraxia becomes a part of every day life for us. I was encouraged to be on my way today to the Developmental and Behavioral Pediatrics office to set up our first appointment and get the paperwork going for Alex. I am convinced if we can get an "official" diagnosis from a specialist then we can pursue getting insurance coverage and summer therapy. I hit today's brick wall when I got there an asked to set up an appointment and I was told that the doctor was not only closing his practice but he was moving to a full-time office on the military base and wasn't taking any new patients. We are not military. This doctor is the ONLY doctor of his kind in our whole city, the fifth largest city in our state I might add. What's wrong with this picture? The girl at the front desk didn't have any idea what apraxia was, much less knew of any other doctors of this kind to recommend to us. I asked where he was sending all of his patients and she said that most of them were just going to be cared for under their regular pediatrician. Well, lucky us... this doctor IS our regular pediatrician. So, we're going to lose him as a primary care physician too. I felt like I was at another dead end. Ok, God, so this is not the doctor you want us to see. So, where do we go from here? I left our phone number with the receptionist in hopes that the doctor might call us with a referral. We shall see.

The Not-So-Speech Therapist

In Alex's Daily Communication Log for today, I asked if it would be possible for them to let me know when Alex had his one-on-one speech therapy sessions and for how long, as I was under the impression that he would be getting therapy twice a week. Remember, it's now been six + weeks since he has had any one-on-one therapy. The speech therapist (ST) was not in today, but the special education teacher talked with her on the phone and mentioned my note to her. I appreciated that the ST called me this evening. This was the first time I had actually gotten to talk a bit one-on-one with Alex's new ST about his disorder and my concerns for him, since he started the developmental preschool. I was relieved to know that she was familiar with apraxia and had worked with other apraxic children. She said that at this point she's working at two schools and has too many students to handle to give Alex the true appropriate articulation drills he needs, but she plans to work on oral/motor skills with him as she can and some signs. He's only been getting group therapy at this point. She told me that she felt he shouldn't have been in the preschool program in the first place, but only getting one-on-one speech therapy for articulation, since that's really his only significant "disability". During an initial meeting with the school psychologist, I was told Alex would only be offered 15 minutes of speech therapy twice a week, OR we could look into the preschool program where he would receive therapy in the classroom and he could go up to four days per week. He was receiving two hours of therapy a WEEK at that point through Early Intervention. I didn't want to go backward. It seemed to me that he would benefit from a variety of group therapy, one-on-one therapy, and oral/motor exercises in the classroom setting, more so than the two hours of therapy he would get in a whole MONTH in the other situation. When I told the ST about this on the phone, she said it was not the school psychologist's place to tell me how much therapy he would receive. She said that the speech therapist would be determined herself and that it would be based on his individual needs, but more than likely it would be the standard 30 minutes twice a week. She told me that she would really like to see Alex involved in BOTH programs, and she would check to see if this was possible. That sounds ideal. But, it may come down to me having to choose between the two programs. I don't know which one would be better. I think one major thing that will help me make my decision is if this speech therapist is familiar with how to treat apraxia appropriately. I will definitely want to interview her before making my decision. She told me she would get back to me about the ESY (extended school year - summer) and whether he can participate in both programs during the regular school year. She said she has no problem with Alex having therapy during the summer. This just HAS to happen, even though the school psychologist says "NO WAY". I'm doing everything I know to do at this point at home with his therapies, but I'm not a speech therapist and I can't give Alex the appropriate therapy he needs. I have to be the best MOTHER I can be right now, and I have another child to think about too.

Bubblin' Glitter Bug

I just got home with a bag full of goodies to help with Alex's therapies at home. I got things to help stimulate the muscles in his face/lips/jaw... bubbles, party blowers, "trick" candles, whistles, and pinwheels. I have to share about the cutest little bubble blower I found at Wal-Mart called the "bubblin' glitter bug". Check it out at Bubblin' Glitter Bugs by Little Kids, Inc. Bubbles come out when you blow into it, and the wings spin around and around. I thought this one was an especially neat little toy for therapies, and so much fun! I just had to share. The kids are having a blast... who knew this was therapy!? Here's a pic of it from the webpage.

The Boy Who Ate Words

There's actually a book out there with this title. I'll have to get my hands on it since it sounds so much like Alex. He's always struggled with "losing" his words. It's hard to tell what words Alex can say since it could change daily. A word he could say today, might be a struggle for him tomorrow. If someone asked me how many words he had in his vocabulary, I wouldn't even know what to tell them! But, writing some of them down from time to time is encouraging to me that he is "talking". I've been trying to make a list in the last day or so of the things that Alex has been saying, either repeated or spontaneous. I'm noticing more spontaneous speech, and some two-word phrases. I'm very pleased with what I'm hearing. He still has a very "apraxic" approach to his words, such as saying the first consonant and vowel and leaving off the ending sounds, or starting with the last consonant and going backwards, but he's trying so hard to communicate. Take a look at this list from just over a day...

"go" -- "bee" -- "cah" (cat) -- "goh" (dog) -- "eeee" (eat) -- "peas" (please)
"ank ewe" (thank you) -- "yay" -- "uh oh" -- "baby" -- "pee-pee" (potty)
"tickey" (sticky) -- "baba" (mama) -- "bow-bow" (rainbow)
"eye woo-woo" (hi train) -- "uh-huh" and "yeah" (yes) --
"uh-uh" and "wo" (no) -- "bow bidge" (broke bridge)
"bye bubb" (bye bubbles) -- "bye wa-wa" (bye water)
"boo eeh" (blue egg) -- "reh" (red) "boo" (blue) "gee" (green)

The Late Talker

I picked up a book at the library last week called "The Late Talker - What to Do If Your Child Isn't Talking Yet" (by Marilyn C. Agin, M.D., Lisa F. Geng, and Malcolm J. Nicholl).


I cannot express in words how wonderful this book is. You can read more about it at The Late Talker. I highly recommend it to any parent with MORE THAN just a "late talker". I also recommend that you purchase this book as it should be a part of your resources through your entire journey with apraxia. This book has a wealth of information that you will want to reference through each step of the way, from getting a diagnosis, early intervention services, setting up an IFSP (Individualized Family Service Plan) or IEP (Individualized Education Plan), starting developmental preschool, and getting appropriate therapy and insurance coverage. I will be returning this book to the library and purchasing a copy for myself. I think the title grabs the attention of a larger audience of parents seeking help for their late-talking child, but this book helps to determine whether or not your child has a real DELAY or a DISORDER. This book focuses on children with speech disorders, particularly APRAXIA. It provides a list of speech signs that will help you identify if your child may have apraxia.

Some of the things discussed in this book will include 1) ways to identify the warning signs of a speech disorder 2) information on how to get the right kind of evaluations and therapy 3) ways to obtain appropriate services through the school system and health insurance 4) fun at-home activities that parents can do with their children to stimulate speech 5) groundbreaking evidence of the promising and dramatic benefits of nutritional supplement 6) advice from experienced parents who've been there on what to expect and what you can do to be your child's best advocate.

I will begin to share some things that if I had owned this book I would have highlighted because of their importance to me.

DELAY OR DISORDER?

From the book:
A delay is a maturational lag in development, for example, a 4 year old who exhibits the language capabilities of an average 3 year old. Often, with time, the child "catches up" to his or her peers without specific interventions. Unfortunately, it's not always evident at an early age if your child has a delay or disorder."

A disorder is a significant (severe) delay with a disruption in the normal sequence of development that's in stark contrast to his or her typically developing peers. The child does not "catch up" if you adopt a "wait and see" attitude. Neurologic "soft signs" like coordination difficulties, low muscle tone, a history of seizures, or the physical signs of a syndrome may be present.

For so long I have "blamed" Alex's early childhood ear infections for his "delay of speech" and it may or may not have some correlation, but I'm not certain it caused his speech problems. As time went on with little progress through therapy and as I learned more about speech delays and disorders, I found that Alex was exhibiting patterns of apraxia. I was surprised that this wasn't discovered sooner and that no one approached me about this disorder until I went looking for answers. I'm so thankful that I've done my research, and that we have started getting services as early as we have. Now my main focus is getting him the APPROPRIATE intensive therapy he needs to overcome this disorder, or at least learn to live with it reaching his full potential, since we have identified this disorder. Several statements from mothers of apraxic children in this book stand out to me. One states, "as a parent of a non-speaking child, it is up to you to be his advocate." This book is a great tool to equip you to be knowledgable about how to do just that. I know I will be referencing information from this book for months and months, possibly years to come.

GETTING THE RIGHT THERAPY

From the book:
Getting the right kind of early therapy is of paramount importance, especially for children who are diagnosed with apraxia, because they do not respond to the traditional speech therapy methods. They do not benefit from group therapy. They need more intensive and more frequent therapy than children with other speech problems. They need intensive one-on-one sessions at least three times a week. If they take a break, they are likely to regress. Children with apraxia do not "grow out of it."

My husband and I have decided that in order to get Alex the appropriate intensive therapy he needs, we must have him officially diagnosed through a developmental specialist. So far we only have an unofficial diagnosis from his last speech therapist, and from mom too, of course. We are fortunate that the specialist he will see also happens to be his primary care physician in pediatrics. I will go this week and schedule Alex's first appointment and start the paperwork. I have no idea how long the process will take to get a diagnosis, but I plan to use it to get services through the school system (ESY - extended school year) through the summer, and have our insurance company cover private one-on-one therapy sessions with a speech language pathologist in addition to school system services. Alex has only received group therapy so far through the school system and as I've read repeatedly in my research, children with apraxia do not benefit from group therapy. I think the program is good for him that he's around other children and in a structured educational setting, but he needs additional more appropriate one-on-one speech therapy as well. I will post about our experiences as we go.

ESSENTIAL FATTY ACIDS

Through my research and information found in this book, I have found that there has been a great report of progress from apraxic children who have had essential fatty acid supplements on a daily basis. Apraxic children have primarily shown most improvement through the supplementation of ProEFA, found at Nordic Naturals. I ordered a three month's supply from their site last night and we will give supplementation a try. Do your research, ask your child's pediatrician, and see if this is something you would like to try with your apraxic child.

COPING WITH FEAR AND FRUSTRATION

This book explains how to cope with your own fears and frustrations as a parent of an apraxic child. It goes on to list the stages that parents typically go through, and in order... Denial, Anger, Fear, Guilt, Depression, Acceptance. Personally, I identified with all of these and I think I experience all of them simultaneously to some degree or another. I think I'm largely in the "Fear" stage. I am intimidated by the people I'm fighting to get Alex the services he needs. I fear the unknown about Alex's future and how this disorder will affect him long-term. I fear that I am uncapable of being the mother I need to be for him. I fear uncertainty, confusion, helplessness, coping. I know these things are natural feelings of the flesh. I also know I need to turn over these feelings of fear to the Lord and ask for His strength and guidance, and overall that His Will be done in Alex's life.

Forgive Me

I've found some comfort from the other moms of speech delayed children I've met on internet message boards. I've found a wealth of information and advice, and I'm truly grateful for these women and their knowledge and experience. It's always a wonderful thing to hear a success story about these little ones who have struggled so much with their speech. Even just the little things, you want to share in the joy with these women. These type of posts use to give me hope, but lately, I've been feeling differently about them... a little overwhelmed with the many success stories from everyone else, and too little of my own. It reminds me, again, of how slow Alex is progressing and I feel jealousy like I've never felt it before. God forgive me. I am so proud for them, but my heart aches to see my baby making noticeable progress too.

Roller Coaster Ride

The research is simply exhausting. Yet, I have something inside of me that won't let me stop. Some days I feel pushed to do everything within my power to get him help to improve his life. The more educated and knowledgeable I am about apraxia, the more I can help him, right? Other days I feel I'm strong enough to just "accept" this for Alex's life and make the best of it. I feel guilty about both. How is that? If I'm willing to just sit back and accept "apraxia", then I feel guilty for not helping my son to reach his full potential. I'll always wonder where I might have failed him, or "what if" I had done this or that. If I'm pushing and pursuing, I feel as if I'm not accepting my child for what God gave me, and I want him to be something he can't be. I then feel I'm overreacting and I feel guilty that there are so many others out there with more severe issues with their special needs children and I should be thankful that Alex is such a bright loving healthy little boy. This journey is such a roller coaster ride of emotions...

STEP and ESY

I learned today a little bit about what STEP training is. It stands for Support and Training for Exceptional Parents. Classes start next month. The purpose of STEP is to support families by providing free information, advocacy training, and support services to parents of children eligible to receive special education services under the Individuals with Disabilities Education Act (IDEA). We can ask questions, and have discussions as well. I will definitely plan to attend. My main interest will be ESY, extended school year services... getting Alex therapy during the summer. I have a folder full of links in my favorite places to research about ESY. Surely, someone can help me get through to these people how important it is that Alex have therapy this summer. I feel like pursuing this is useless. This is so frustrating.

As I picked a happy Alex up from school today, I spoke briefly with the speech therapist. She said at this point that Alex had received therapy in a group setting, but she had not worked with Alex one-on-one yet. WHAT? So, he's been over five weeks with no one-on-one therapy, and next week is spring break. This is just wonderful!@?#$%&*

Fun Therapy

I let Alex stay home from school today. His allergies are acting up and it's just causing him to feel yucky overall. Mornings are always the worst, but as the day went on, he was fine. I'll send him tomorrow. It's picture day. His first school picture!

Alex's former speech therapist called me recently to recommend something fun for Alex's therapies. It's a cassette/CD by Discovery Toys called Sounds Like Fun. Discovery Toys I had not heard of this before, but from what she described it is words being sounded out with a classical music background. I prayed to find this at a good price, and I did! What a blessing! I cannot wait to get the tape in the mail and see what it's all about. We still have a tape player in the car so I figured the kids would love to listen to this as we're running errands or going to school.

Another great tool for therapies that was recommended to me is the Baby Bumblebee videos. Baby Bumblebee We got the first vocabulary builder off of eBay. Alex loves it, especially since the first vocab word is TRAIN! Baby Math is a fun one too and Alex loves the counting part. He wants to stand right in front of the TV and point to each one as they are counting... and he'll say "uh, eew, eee, or, eye". LOL We were so blessed to find this one in great shape for just a buck at the Goodwill! The Lord provides, and he's going to help me take care of my little guy!

Lost

I think this developmental preschool class is good for Alex, and I feel confident now in taking him there. But, for some reason I can't get past the feeling that he probably isn't getting APPROPRIATE therapies for a child with apraxia. I'm not a speech therapist though, but I have been educating myself, and I trust my instincts. From all my research on apraxia, I've read that "Children with apraxia reportedly do not progress well in their actual speech production with therapy tailored for other articulation problems or with language stimulation approaches. What experienced therapists and families report is that children with apraxia need frequent one-on-one therapy and lots of repetition of sounds, sound sequences, and movement patterns in order to incorporate them and make them automatic." Now, I've sat in on a class before when the speech therapist was working with the children as a group, and I don't know how her particular style would have benefitted Alex's specific speech disorder. I've not seen her working with Alex one-on-one though... and again I won't get any kind of report card until Alex has been there for six weeks. We're now on our fourth week with spring break next week. Maybe I'll have something soon. I hate not knowing what's going on with his therapies. It makes me quite a bit more motivated to do more therapies on my own with him at home. Right now I'm working with Alex on a few signs for words he can already say, and signs that his first speech therapist introduced to him that he hasn't used in a while. Once he gets the hang of it well, we'll start working on signs for words he would use often, but cannot say. His former speech therapist really worked him hard. They were so good together. She always told me not to try to be his speech therapist... to just be his mom. But, she gave me some great ideas on how to incorporate his therapies into easy, fun, every-day activities. I knew that even where I may fail at home, she knew what she was doing, and she was knowledgeable on how to provide appropriate therapy for his disorder. I feel lost now.

Early Intervention Discharge Summary

I finally received a copy of Alex's discharge summary from Early Intervention. It noted that all of the social skills goals we had set for Alex had been met, and he was no longer showing a delay in this area. Wow! One of my biggest concerns in the beginning of all this was how he would separate from me as he had severe separation anxiety when we first started the Early Intervention center-based program. That is a thing of the past! It stated that he still needs 'a LOT' of help in the area of communication, with recommendations to continue speech therapy and routine medical follow up. They noted that he had begun to show some delay in adaptive skills during the time he was receiving services. He actually had enough delay in this area from the very first evaluation they did to qualify for services, but I didn't feel the need to explore therapies for this area just yet. Considering how far behind he is in his speech, being able to put on and take off a coat by himself just doesn't seem like too big of a problem. She recommended that I call her to find out information about STEP classes that I should attend. I have no idea what this is, but I guess I'll find out soon...

That's My Boy

Alex can be such a little darling. It catches me off-guard sometimes how smart he is, although I don't know why it surprises me. He is quite a character. Lately he's been doing something different. Humming! Today he stole the show. He was humming and dancing at the same time. When he finished, he started clapping and then so did we. He then proceeded to bow and say "thank you, thank you!" LOL I really needed that. It was so precious to actually see him not only do something so appropriate like that, but to be able to say the words to go with it. I could just eat him up sometimes!

Daily Communication Log

Alex has a folder he packs back and forth with him to school in his, none other than... Thomas the Train backpack, which includes his Daily Communication Log. Each day he's at school, they fill out a form letting me know what he did that day. He had speech therapy today. I was delighted to read the "Notes" section of his paper today. His teacher said Alex was much more verbal today and attempted to communicate quite a bit. She said the speech therapist was impressed with his approximations to words and his increased attempts. Wow! Maybe he's getting use to them a bit!

Here's my boy all ready for school today! Alex ran right into his classroom this morning and was smiling from ear to ear when I picked him up. I could tell, even without a word, that today was a good day for him... that makes it a good day for me too.

God Doesn't Make Mistakes

I believe this to be true. These words encouraged my heart as I stumbled upon them while skimming a message board today. God didn't make a mistake when he made my Alex. It isn't a mistake that he has Apraxia. I needed to hear those words today, and maybe you do too. Still, it isn't always easy to accept, and to deal with on a daily basis. This is when I turn to my faith. As I turned my desktop calendar to today's date, the scripture spoke loudly to me. "For You created my inmost being; You knit me together in my mother's womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well." - Psalm 139:13-14 NIV Once again, proof that my little Alex is made by the fingertips of God to be exactly who he is. Tonight, I'm going to a Christian contemporary/rock concert with artists Barlow Girl. Barlow Girl Some days this "journey" with Alex feels so lonely. Barlow Girl's top hit "Never Alone" reminds me that when I don't always FEEL God's presence, I'll hold on to what I KNOW from His scriptures... He's here, and I'm never alone. And, neither are you. Today is just a piece of Alex's puzzle. God sees the "big picture" of his life, the puzzle completed, and I know that it is beautiful. I hope that somehow as you're reading, possibly a parent of a child with special needs, that your heart will be encouraged by these words just as mine was today.

::sigh::

I'm feeling a little down after picking Alex up today from preschool. According to his teachers, he's being distant, and not involved in his therapies. The speech therapist said some days he's interested, and other days he just sits there and looks at her, and she gets nothing from him. It seems like it's going to take a while for him to "warm up" to them. This place, and all these people are new to him. It's going to take some getting use to. I guess I'm just sad that they haven't seen the precious little boy that I know and love so much... YET. I hope eventually they can see how truly bright and special he is. I really hope this preschool helps him and it's not just something to "do". Other than a progress report that Alex will bring home every six weeks, I won't be hearing anything from the speech therapist about what therapies he's receiving and when, or suggestions on how to continue helping him at home. That's a little discouraging. I guess I'm spoiled by our last ST who met with me every day that I picked up Alex or sent a note home, along with daily "homework" projects. One comment that she made to me on her last day with Alex was that all speech therapists bring something different to the "table" for each child. I've continued to have high hopes with each new teacher/therapist, and then be let down by Alex's continued slow progress. This time I feel quite differently... a little too discouraged a little too soon. Alex was doing so good with the speech therapist he had with Early Intervention... now I feel like we're back at square one again. ::sigh::

Thank you...

I have been so blessed to connect with so many amazing moms since receiving Alex's diagnosis and starting this journal. Thank you to all of you who have visited this site, and went on to email me your words of encouragement and support. I've had others stop by here and recognize that a child they love shows similar symptoms, and have lots of questions. I'm glad I can help. I've shared laughs, tears, and lots of cyber hugs with some wonderful mothers who are on a similar journey with their own child. God has chosen us for this awesome journey. I do not yet know why, but I have comfort knowing that God chose ME, and God made my Alex just the way he was suppose to be. Somehow knowing I'm not alone makes this so much easier. So I just want to say THANK YOU to those who have been here, and those that will come in the future. You help keep me looking up!