http://www.starfall.com

I cannot recommend this website enough! We've been using it for months now and both of the kids LOVE it. The ABC's part is most appropriate for Alex at this point as it is helping him to sound out letters. He actually gets very involved using this website and will attempt almost every sound. There are other wonderful activities on this site as well that help with reading for older children. Check it out at http://www.starfall.com.

Apraxia Conference

Over the weekend I attended a conference on Apraxia with Penelope Hall as the keynote speaker. It was very interesting, although it appealed more to the speech language pathologists (SLP) and students in this field of study than it did to a parent of a child with apraxia. In some ways it was informative, but in some ways it was too factual and not personal enough for a parent. They were using a lot of terminology that was way over my head. They also explained very little about therapy and more about how to recognize the disorder itself, it's characteristics, and what to expect from working with a child with this disorder. They didn't offer much information about what parents can do at home to aide in therapy. I felt like the presentation was disassociated from the children and more focused on the disorder. It was good in a way that these people were here learning about this disorder, but I was sad thinking that most of them will not hear much more about apraxia once they left the conference, and more than half of them will probably never work with a child with apraxia. In a way it was sort of discouraging as they said in such a factual way that "apraxia is a lifelong disorder... do we expect these children to fully recover from this disorder? - NO... (do we expect them to make gains from therapy? - YES.)" It's hard to swallow those statements sometimes when you have such hope that your child will come through this and it will one day be a thing of the past. The truth is that at some level a child with apraxia will always be "apraxic." I also learned that it is a pretty rare disorder. Only about 1 to 2 preschool children in 1,000 have developmental verbal apraxia. That's discouraging as well to think about how few people are actually ever going to be fully qualified to treat a child with apraxia... and will we ever find one for Alex? They explained that prognosis is based on several factors... the basic severity... how early the child is diagnosed and starts appropriate therapy... the quality of services he/she receives... and how well the child receives and participates in the treatments. You simply cannot determine what a child's ultimate prognosis will be, as each child, their experiences, and their therapy is different and may change during the course of treatment. One thing to be sure of is that children with apraxia will not just outgrow it on their own. That is why I'm trying so hard NOW to get the right treatment for Alex. One thing that I wanted to be able to share here to other parents who may not be sure if their child has apraxia was something that Penelope Hall stressed during the conference. She said that in order to correctly diagnose this speech disorder, there must FIRST be SPEECH. This disorder is characterized by the specific PATTERNS of speech the child exhibits, not the fact that there is an absence of speech. It can also be difficult to diagnose apraxia because of several factors... not all symptoms of apraxia must be present to diagnose this disorder, nor is there one particular characteristic that must be present in all apraxic children. Children also change over time, so that complicates things a little more. You can find out more about Penelope Hall and her research and publications on apraxia at http://www.shc.uiowa.edu/wjshc/facultyandstaff/hall.html.

Easy Does It for Apraxia

I am very excited that I received our apraxia materials today in the mail that I ordered off eBay. They are called "Easy Does It for Apraxia" Preschool and the program is designed for children ages 2 through 6. I've heard wonderful things about this program and I hope that it is manageable for me to do at home with Alex. It comes with two workbooks... one is a Therapy Manual and one is a Materials Book. Alex got so excited when he saw the books. There is a theme througout of a turtle which symbolizes slow, easy speech and steady progress. The book stresses that DAILY practice is critical for consistent progress. Yikes, I have my work cut out for me. But, it looks like a load of fun too. Until Sarah is in Kindergarten this fall it may be a bit harder to incorporate the one-on-one time I need with Alex, although having her participate as well might encourage him to join in. She usually just winds up speaking FOR him. We're working on that. I'll update on the program as we get into it... how Alex participates, any progress he makes, and how we like the program. This program is by LinguiSystems by Robin Strode and Catherine Chamberlain, and can be found at LinguiSystems website www.linguisystems.com or more specifically Easy Does It for Apraxia - Preschool. I would love to hear from anyone who has used this program before and what their experiences were. Feel free to comment or email me.

Mama's So Proud

When I picked Alex up from preschool today, his teacher asked Alex to show "mama" this or that. I kind of got tickled because she was so excited about whatever she was going to ask him to do. She said, "Alex, how do you spell your name?" I can't imagine the look I must have given her, but then much to my surprise Alex began to say... "A - L - E - (keh) for X" I cannot express how delighted I was to hear him spell his name all on his own. I must have squealed with excitement because all of the kids looked at me. She then asked Alex to walk toward her and he did. She asked him to walk away from her, and forward and backwards, and he did it perfectly. I'm so proud of my boy! Ok, so I'm beginning to think this has got to be more than just a "spurt".

HE CALLED ME MAMA!

I feel like a mom hearing her baby's first word!

Insurance Claim for Private Therapy

I stopped by today to see Alex's former speech therapist, Ms. Jane, the one that diagnosed his verbal apraxia. She had Alex's claim ready for the insurance company and wanted me to review it. Everything looked good and I was pleased. She stated that his diagnosis was neurological in origin and not developmental and that it required intensive treatment or his prognosis for ever speaking would be poor. Her diagnosis stated Alex had verbal and oral apraxia. She is asking for three months of one-on-one therapy twice a week, and after three months we'll try submitting the claim again for three more months, and so on. It may take a while for everything to fall into place, so Ms. Jane offered to do private therapy with him once a week for 30-40 minutes "off the books" until we can get something in place for Alex. I could not be happier. I just hugged her and thanked her over and over. She will see him every Wednesday just after preschool starting next week. I know Alex will be so happy to see her! So will I. She has been the most positive helpful person we've met on this journey. I cannot express enough how thankful I am to have her in our lives. I am so encouraged today!

Getting more therapy...

Alex's speech therapist is out for the week (so no therapy, again), but I did run into her for a moment as classes were changing today. She said that we should have another IEP meeting at the end of this school year to put in place an education plan for Alex for the next school year. That plan will not only include his participation in the developmental preschool four days per week, but also one-on-one speech therapy twice a week for 30 minutes. All I can say is I'm very pleased that he will be able to receive both services through the school system. I only regret that it can't start sooner. It took some effort on my part to keep pushing and asking questions, but the services are there and so is his need for them. I have learned that as a his mother, I have to be his voice, his advocate. He's counting on me.

EFA Update - Day 14

It is two weeks into supplementing with ProEFA (essential fatty acids) from Nordic Naturals. I can defnitely say there have been no "instant" results. However, there have been times, especially in the past week where Alex has definitely shown improvement. Alex's speech ability has always come in "spurts". At this point there's not been enough improvement to tell if this is just another spurt or it is really contributed to the supplements. It would be wishful thinking at this point to say the supplements were helping. Either way, I've been so blessed to hear my little boy attempting to talk just a little bit more. Just today as he was playing with stickers, he put one on my shirt of a cat. He then pulled off another cat sticker and said "wuh cah" (one cat). As he placed it on my shirt next to the other, he struggled to hold up two fingers, and said "ewe" (two). This is really the most dramatic example, but I remember just the other day he asked my husband to "coo be" (excuse me) as he passed him in the hallway. He said "bih tuh" (big truck) as we passed a semi while driving yesterday. Just for him to be using two words together again is encouraging. I realize that we have a long way to go and that most of what he says is only intelligible to me, but I'm still hopeful that things will improve for Alex soon. We will definitely continue supplementing, and I will continue to update if and when we have any progress to share. From my research there have been many children who still do have success with the supplements even if they show little to no progress in the beginning weeks. So, we are still hopeful!

Emails and Comments

I am so thankful to each of you that have recently visited Alex's blog and have gone on to send me emails and post comments of your own struggles and accomplishments. You are such an inspiration to me. I am touched by each story, and I'm often encouraged by your strength and faith. As a parent of a child with apraxia myself, I encourage you to "Be joyful in hope, patient in affliction, faithful in prayer." (Romans 12:12) through this journey. God is faithful, and He is always there. When you draw close to God, God will draw close to you. He knows what we go through every day with our children. He created them! He has a purpose for our children, and a purpose for this journey. Please feel free to share Alex's Journey with others and may I encourage you to share your own journey as well. It is amazing to me how God has worked through this blog to help lift me up, and give encouragement to others through our story.

Local Magazine Article on Apraxia

I am so excited! This past week I took Sarah to the library while Alex was in preschool and I found a free local parent magazine. It is distributed all over our city at schools, doctor's offices, some churches and business related to kids, etc. I've seen it before and read it in the pediatrician's waiting room before but not paid too much attention to it, until now. The April issue was dedicated to Autism Awareness Month and Child Abuse Prevention Month, and it got me thinking. It was full of informative articles and advertisements and listed tons of support groups and local events, etc. I contacted the publisher of the magazine that very day about doing an article on Apraxia in May, which is Better Hearing and Speech Month and he was very interested and said this is exactly what he wants for the publication, and our community. He said he'd like to do a question and answer type of article and let me answer the questions. Well, I told him that I have my own ideas about what questions and answers would be beneficial to the community, so I shared the following with him.... "What is Developmental Verbal Apraxia?" (a.k.a. Verbal Apraxia, Dyspraxia) ... Signs and Symptoms of Apraxia ... What is the Difference Between a Delay and a Disorder? ... Important Things for Parents to Know ... Recommended Resources and Services ... Things Parents Can Do at Home ... and My Personal Experience as a Parent with an Apraxic Child. He liked what I had presented to him and told me he would probably print the information I sent him basically "as is" although he may tweak it as he finishes his research on the topic from the links I sent him. He said he would send me the final draft to review before it goes to print. I am soooooo excited and encouraged. I have also created an online support group for local moms in my city through Yahoo who have children with apraxia. They will be sharing the web address to the group in the magazine as well. I really hope to connect mothers together locally who have children with apraxia for support, as this journey can often feel lonely. More than anything, I hope that this article brings awareness to parents who don't realize that their child is suffering with apraxia, and not just a "delay". I don't know why this feels so good, but it does. I feel like our journey can help others in theirs, and that gives me some peace.

School Spring Picture 2005

I am so proud of this picture. Alex looks like such a BIG boy! This is his spring class picture from his preschool.

Sign Language / SID

I've been seeing an increased attempt to communicate from Alex though signs, but I have to slow him down to get him to actually attempt them. He'll come running to me, whining, and I'll have to say something like "slow down Alex... tell Mommy what you need... use your hands if you need to." He'll sign "help" and say it simultaneously which comes out "pel". He told me today he had "big shoes" in sign language and said "bih". Woohoo! That means he put TWO WORDS together using his signs! He also used the sign for "eat" and said "eeeee" when he was hungry. I was so proud, since he's pretty much been imitating the signs I show him and not using them spontaneously! I've tried many signs with Alex that he can already say so he can get use to putting the signs and words together. We started on "thirsty" yesterday which is a word he cannot say. I put off the sign language for so long for several different reasons. His first speech therapist used a couple of signs with him when she started therapy at 18 months old. She wasn't the best at being in contact with me and informing me of the signs he was learning. It was confusing and at the time I didn't think it was of great importance so I didn't pursue it. His second speech therapist said she found Alex very uninterested in signing and felt she needed to be spending that time with him concentrating on articulation drills and oral motor therapies. At that point he was getting two one hour one-on-one speech therapy sessions with a wonderful therapist and had three more hours of classroom time with Early Intervention. I thought with all the therapy he's getting, surely he'll be talking soon and we won't need the signs anyway. I was wrong. I regret that I didn't pursue it from the beginning. Maybe by this point he would be able to communicate better through signs and it would help eliminate so much frustration on both parts. I figure that using sign language would mean I would probably be the ONLY one he would be able to communicate with using his signs and he might become more frustrated with peers, teachers, and family members if left alone with them, and they do not understand his signs. I guess I still am not convinced one way or another about the sign language, but with such little progress that Alex is making, it looks like we're going to need some type of help in communication for him. My husband has little to no interest in signing. My daughter, however, thinks it's the coolest thing and she's trying to "read" the sign language book we have asking "Mama, what does (Sarah doing the sign) mean?" It's really adorable, but after 25 or so signs, it gets quite annoying. Maybe this is a way for her to learn along with us. Someone shared a link with me that has been great for finding signs. I have an old sign language book but it hasn't had several words that I've been searching for, so this has been quite helpful. Free 3-D Sign Language Dictionary

As a side note, I noticed several times today that Alex covered his ears and literally freaked out at something he saw that he didn't like, such as the spider he saw on the computer screen (animated) while playing a game... or when he walked into the dark laundry room. He doesn't close his eyes... just covers his ears. He's done this from time to time anyway, but not with as much anxiety, and I was actually commenting the other day that I hadn't seen Alex do this in a while. I'm very interested in seeing if the doctor's will consider Sensory Integration Dysfunction (SID) during his evaluation soon. I'm not kidding when I say he must have washed his hands half a dozen times or more on his own initiative today.

Wake Up the Mouth

Alex picked out a great battery-powered spin toothbrush by Crest. Crest Spin Brush - SpinBrush Kids It's a firetruck, and when you turn it on, it lights up! He adores it. Isn't it cute? This is a great therapy tool for masaging the gums, lips, tongue, and even cheeks and chin! Alex loves doing this exercise himself. The idea is to stimulate the muscles in and around the mouth which aides in speech production. There are other great ideas similar to this such as the spin lollipop!

Just Another Day...

I got the info packet from the developmental center on Wednesday afternoon. They will give Alex an evaluation and diagnosis so we can pursue additional therapy and have it covered by insurance. I ran around yesterday getting all of the necessary materials from doctor's offices to include in the packet I will return to them, along with copies of all his previous evaluations by Early Intervention and his speech therapists. I had the packet back in the mail to them within 24 hours, sent priority mail with delivery confirmation. They should receive it today. I have no idea when to expect them to get back to us for an appointment. A referral from the pediatrician was required before they will even review the patient's paperwork, so our doctor took care of that yesterday. I got a copy of the referral for myself and one to send with the packet back to the developmental center. The pediatrician's office not only sent a copy to the developmental center through a fax, but they sent one to the insurance company as well, stating the diagnosis was "speech delay" and used one of the BAD diagnostic codes for "developmental delays" which my insurance does not cover. Ugh! I have no idea what to expect. The doctor's referral was for an evaluation and treatment. Well, the insurance won't cover treatment at this point, especially not since they used the diagnostic code for "developmental delays." With or without a referral, our insurance company should cover us visiting this specialist for an evaluation though. If the specialist can determine a better diagnosis using the best diagnostic codes for apraxia, then the insurance company will have to review it again and proceed with THAT diagnosis. Hopefully with the SLP's claim and one from a specialist, we can get coverage. They may offer us services at the center or we could try and find a local SLP that is knowledgeable about Apraxia (rare breed) around here since the center is an hour away. (sigh) Last night was suppose to be STEP training classes (Support and Training for Exceptional Parents), where a parent advocate explains the rights of parents of children with disabilities, with question/answer open discussion. When I got to the meeting, I found a note on the door that it had been cancelled and to call tomorrow to find out details. I was upset to some degree, but also a bit relieved. I'd had enough for one day. I called this morning and they said it had been rescheduled for the 21st. I had them put my name on the list of participants. Today is Friday... no school, and Alex slept in until 9:30. Shew, he's as tired as I am!

Power of a Praying Mother

From time to time I have slipped into Alex's room at night while he's sleeping to check his covers, to look upon his sweet face, or to kneel and pray for him by his bedside. I do this often for both of my children. I try to leave an open line of communication to God every day all day, but sometimes life gets so hectic and busy that I take for granted that my God is still right there and waiting for me to come to him and ask for his help in this journey. As I was covering my boy with prayer last night I decided it was time to commit to giving him to God every single day through prayer. Whatever it is that God has planned for his life, I want it to bring Him glory. So we'll walk this journey trusting that it's all in His plan. I believe in the power of a praying mother.

SLP & Insurance Matters

I called the speech therapist (SLP) today who use to work with Alex in Early Intervention. She's just the nicest person you'll ever meet and she is so willing to help in any way that she can. She is the one who diagnosed Alex with verbal apraxia. She was so sorry when I told her that Alex wasn't getting therapy in the school system like he should be. I've been told that we may not need a neurologist or developmental pediatrician to diagnose Alex to get insurance coverage. The SLP can file, and with the right terminology and codes, it might just work! So, we'll start here. She said she'd be happy to help us get everything ready to be presented to the insurance company. She's an angel. I thank God for putting her in our lives. I mentioned to her the book I've been reading, "The Late Talker" (see previous entry with same name for more information, archives March 26, 2005) and she said she had never read it but that several of her patient's moms have mentioned it to her before. She said she would consider it helpful if I would provide her with information from this book to write the insurance company. It includes the diagnostic codes needed and even a sample letter to the insurance company for coverage. So, I'm off to do my "homework". Let's pray that it works!

Developmental Evaluation Status

I got the letter from the center where Alex was referred for an evaluation, and lots of papers to fill out about his history of development. I have to send them back to be reviewed along with a referral from his pediatrician and reports of his hearing evaluations before they will even schedule him an appointment. I suppose I'll continue to pursue this avenue (even though the SLP will help me pursue insurance coverage without further diagnosis), just because I would like to know if there are any other underlying issues to Alex's disorder, that the speech therapist could be missing, such as sensory integration dysfunction or hypontonia, etc. And, if the insurance company denies the first claim from the SLP, we'll already be one step ahead of the game. There are so many steps to this process, and it looks like it may take a while for things to happen. It can get overwhelming, but we'll take a day at a time. I'll stop tomorrow at the ENT's office to sign a medical release form and then I'll have to pick up copies of Alex's records next week. I hope getting the referral from the pediatrician is as simple as having them fax it to the developmental center. I called the insurance company to confirm that the center was covered, and it is. I also had a local parent of an apraxic child to recommend a particular doctor in this practice. God is definitely opening doors...

On My Own

God gave me a scripture today, and I feel like He must have written it just for me at just this point in our journey. "Trust God from the bottom of your heart; don't try to figure out everything on your own. Listen for God's voice in everything you do, everywhere you go; He's the one who will keep you on track." - Proverbs 3:5-6 I pray that my heart will be in tune with God so that I can hear and receive his guidance. I can't make this journey alone. I'm beginning to wonder if this is Alex's journey or mine, LOL!

EFA's

I'm excited we got our "stinky fish oils" from FedEx today. We purchased our ProEFA, an Essential Fatty Acid supplement, at NordicNaturals.com. It has documented successes with many apraxic children. We're going to give it a try. Today Alex had his first supplement straight from the spoon. He didn't even make a "face". It had a nice lemon fragrance, much to my surprise. I was expecting it to be fishy. I don't know what to expect or when, but I'm hoping like many other families, we see progress soon.

Nordic Naturals' ProEFA is an Omega-3 (from fish oil) and Omega-6 (from organic Borage oil) combination. Each 1000 mg soft gel capsule provides EPA, DHA, and GLA, which are important for proper cell signaling and membrane flexibility.
"Anectodal reports have been dramatic and strongly suggest that LCP [long-chain polyunsaturated fatty acid] supplementation - combined with speech therapy - could become the treatment of choice in disorders such as apraxia." - Marilyn C. Agin, M.D., Lisa F. Geng, and Malcolm J Nicoll, “The Late Talker: What to Do If Your Child Isn't Talking Yet”, pages 118-119, Chapter 8: Alternative Strategies: Nutritional Intervention.

Here is a picture of the bottle and capsule. We just snip the end and squeeze the liquid out. Alex will take one a day and I ordered a 3-months supply to get us started.



Order at NordicNaturals.