He is Faithful

My sweet boy laid his cheek softly against mine as I held him this morning in church. I was reminded once again of God's promises as we worshipped through song...

He who began a good work in you
He who began a good work in you
Will be faithful to complete it
He'll be faithful to complete it
He who started the work
Will be faithful to complete it in you

If the struggle you're facing
Is slowly replacing
Your hope with despair
Or the process is long
And you're losing your song
In the night you can be sure
That the Lord has His hand on you
Safe and secure
He will never abandon you
You are His treasure
And He finds His pleasure in you

Philippians 1:6
"Being confident of this very thing, that he who began a good work in you will complete it until the day of Jesus Christ.

First Day of Therapy and More Progress

Our much anticipated first day of therapy has come and gone. We look forward to going back next week. Our first day was very casual as the therapist just wanted to let Alex get comfortable with her and the therapy room, and interview mom a bit. His therapist was so nice and worked well with Alex. She was just amazed that he had mastered some very hard sounds such as /l/ and /r/, yet couldn't begin to utter some that were usually among first sounds for young children. He continued to over use the /b/ sound. She was able to continue some testing that he didn't finish during his initial evaluation. He did so well and I was so proud of him. We took the first opening for therapy that was available but in a few weeks we may actually be back on the waiting list for another specific day and time. Alex's sister, Sarah, will be starting Kindergarten in a few weeks and the current times are conflicting. Alex will also be starting preschool again four days per week. It looks like we would wind up having another therapist pretty soon anyway as the one we saw last week was due to have her first baby soon. She looked precious and it reminded me of how quickly the time passes. It seems it wasn't so long ago when I was eagerly awaiting our baby boy. I was so relieved when he appeared to be perfect at birth. I had no idea what would lie ahead for us. I will have to say that I couldn't imagine loving him any more than I do if he WAS "perfect." I am so pleased to be able to say that Alex continues to show progress. In the past few days I've actually heard a couple of full sentences. Yes, I said full sentences! As we were leaving the hospital after Alex's first therapy session we went back through the waiting room where they have a playroom for the kids. Alex said "Own go pay, kay kay, Mama?" (I want to go play, OK, Mama?) You bet I let him go play! It was just a couple of months ago we were still struggling with putting two words together! He still has so far to go and doesn't speak clearly enough that strangers would be able to understand him, but just the fact that we as his family are able to understand his wants and needs more and more everyday is such a blessing. I love this blogging thing. It really helps me to look back and see just how far we have come on this journey already!

Some Intimate Thoughts

I stumbled across a wonderful quote today I wanted to share...

Stop telling God how big the storm is,
Instead tell the storm how big Your God is!

Wow, how many times have I cried out asking God why this is happening to my baby. I know in my heart there has to be a plan... God's plan for his life. I keep reminding God how big our "storm" is asking him to heal my little boy. I will continue to be hopeful and faithful in prayer. However, my prayers are changing somewhat. I am learning to be more patient and realize that God will work things out in His timing and not necessarily the way I would have wanted. I still don't understand it all, and I can't see the "big picture", but I trust that God has given me this very special child whom I love with all my heart. Ultimately I want this journey to give Him glory. So we'll take the next step into the next day and see where God takes us and blesses us along the way.

Insurance Coverage

Disney was spectacular. No better news could have come after a magical vacation that the news I received today that our insurance will begin covering private speech therapy 90% with unlimited visits. Alex's first speech therapy session will be at 9 AM on Wednesday the 13th of July. He will start off with one hour per week of therapy until they get a grasp of his strengths and weaknesses to determine if more therapy is needed, up to twice a week. This is nothing less than a miracle. God is so good and as a friend reminded me recently... this is all in God's hands anyway. I can only continue to pray and have faith that His Will be done in Alex's life. I am feeling so blessed and encouraged today.

Diagnosis: APRAXIA

We've been waiting for this call for almost a week since Alex's evaluation, but waiting much longer for this diagnosis. I'm relieved in way to have finally received an official diagnosis for Alex of Apraxia, from a nationally known children's hospital specializing in speech and hearing. Yet my heart can't help but feel heavy at the news confirming my fears all along. I'll share more about the report when I receive the paperwork by mail. She just went over a few things with me by phone, and put Alex in the severe apraxic category. We'll begin the process of getting insurance coverage for therapy... and more importantly the RIGHT KIND of therapy for a child with apraxia. We're leaving for the sunny state of Florida tomorrow for vacation, and it couldn't come at a better time. We'll pick back up where we left off on this journey when we return...

Occupational Therapy Evaluation

We had a great day. Our appointment lasted almost four hours, but Alex was very cooperative and particpated well most of the time. Of course, he was able to do very active things that kept his interest such as draw, cut, run and jump among many other motor activities. We received a summary of results today, but we'll receive much more detailed paperwork regarding today's evaluation in the mail soon. Alex received a diagnosis of Muscle Incoordination and Sensory Processing Disorder. It is recommended that he receive occupational therapy once a week to address his areas of need, which were found to be mostly sensory related, and self-help or adaptive skills. I hope that we can coordinate having his occupational therapy within his regular preschool setting when school starts in the Fall. I should probably call for another IEP meeting to address these issues and put in a request for the school system to do their own evaluation as well. From what I understand, even with our new diagnosis', it still make take a while to get occupational therapy in place for Alex, so I better get the ball rolling soon. At least we are getting answers and we are on the way with getting appropriate therapies for him. That is encouraging. Alex had his speech evaluation last week, but we have yet to hear the results from this testing. I hope to hear something by tomorrow.

The Big Day

I prayed over Alex this morning before he woke and for everyone that would work with him today. It was the day for our much anticipated speech and language evaluation. It was a pleasant atmosphere and our therapist was great. She had a lot of tools for evaluating Alex, but wanted to know which was my priority in case we ran low on time... speech (articulation), language (cognitive), or apraxia. I chose to start with apraxia testing since this was my main concern... does he truly have apraxia, or just a severe articulation disorder? We covered the other areas as well, but not as thoroughly as she would have liked. Alex did fairly well staying on task in the beginning but soon lost interest. He was just precious, but we had to give him many short breaks. Unfortunately, the time flew by and we didn't even get close to finishing any of the testing. I felt discouraged as this day was so important to me and when Alex was done, he just shut down. The therapist tried to encourage me by saying that I had provided her with very thorough background information from his former therapists and from what she gathered upon observing him today, she should have no problem scoring him to find out if he does indeed have apraxia. She said he definitely does have apraxic characteristics, but before she told me one way or the other as far as a diagnosis, she wanted to run the results of our testing through her computer and get a more accurate reading. She said I should hear from her within the week. I would love nothing more than to know for sure he does not have apraxia, but my heart tells me this is it. Either way we are dealing with a severe articulation problem that is going to require intensive therapy. I'm hoping that through this evaluation we can get insurance coverage for private therapy. We have not been successful at all attempts with the insurance company. But, this is all in God's hands. He will take care of everything. I believe this, but it's so hard not knowing what the future holds, and what will happen next. God forgive me when I doubt and when I am impatient.

Summer School

Today was Alex's first day of the extended school year summer services. He missed school last week because we were out of town. He was so excited about going today. He took a hold of his teacher's hand the moment we arrived and walked right into his classroom with her where he joined the other children. I could barely get a kiss goodbye (sniff). There will be about ten children in his class, along with a teacher and three aides. Their classtime will include time spent with a speech therapist in a group setting, circle time, fine and gross motor skills (art, etc.), centers - cognitive, communication, etc., story time and snack time. Overall, Alex seemed happy and I was pleased. I'm very thankful to have Alex a part of this program.

Helpless

I do the best I can daily to help Alex communicate to us, and to understand what he is communicating. It's a way of life for us now. It's so automatic, I often don't have to think about it. But, sometimes it just hits me like a ton of bricks, and my heart just wells up with so many feelings. Tears come to my eyes, just as they did today as Alex spoke not one intelligible word to me as he tried to communicate his needs. I want to know what my sweet boy is saying to me. I want him to know that what he has to say is important to me, and that I'm trying my very best for him. I feel so helpless sometimes. As a mother, that is such a terrifying feeling.

Hide and Seek

We played a fun game of "hide and seek" today. I took alphabet flash cards and hid them all over the living room. I gave Alex a bucket and he began his search. He squealed as he found each card. Each time he picked up a card we would sound out the letter and/or the name of the picture on the card. If I knew he couldn't say "walrus" we would sound out the "wuh, wuh" sound for /w/. He would then place it in his bucket and go on to search for the next hidden card. He found every card and we had a blast. Just another fun therapy idea I thought I would share.

Sharing Educational Websites

I've been looking all over the net for great educational websites to help in Alex's therapy. Some have wonderful printables, some have neat craft ideas, but I'm not finding much specifically targeting speech and articulation. Alex loves the printables and some of them really help with fine motor skills. I would love it if those of you who visit here would share any sites that have been helpful to you as a teacher, therapist, or parent. You'll find many of our favorite sites listed in the left column of our blog.

Making Progress

Wednesday was Alex's last day of preschool for this school year. I'm not sure he understood when I tried to explain it to him. He will be getting ESY (extended school year) services through the summer which starts June 7th. We'll be out of town the first week though, so he'll start the following week. He'll also continue to get speech therapy once a week for 30 minutes with our former Early Intervention speech therapist who is so kindly seeing us "off the books". I don't know how long that will last (hopefully our insurance will step in soon and cover the cost of private speech therapy), but she is just an angel. She is encouraged, as am I, at the progress we can see Alex making. She says he is making better eye contact with her upon request and that he is sitting still and participating well in his therapy sessions. This is one reason why I am so glad that we went ahead and put Alex in the preschool program. I can really see how it has benefitted him to be in a classroom setting where he receives structured learning. I've been making a notebook at home to keep all of our activities in from the Easy Does It Apraxia - Preschool therapy books we're using. I took it with me to his therapy session Wednesday and offered the therapist to use any of the activities we had already prepared. She was very impressed and told me that she thinks I would be a great preschool teacher or speech therapist, as she has said before. Actually, Alex's own special education teacher and school system speech therapist commented to me the same thing at his IEP meeting last week. Wow. Maybe that is something I will consider in the future, but for now, it's all about being the best teacher I can be for Alex. Today during "homeschool" Alex wrote his name at the top of his paper. I am so proud of my boy.

Baby Babble

If your child is apraxic, or just a late talker, I HIGHLY recommend you check out a speech therapy video called "Baby Babble". I'm so grateful to a friend of mine for sharing this with us (thanks Johanna!). Alex really loved this video and interacted well. He attempted all speech and sounds that he heard. It is not only great for speech, but it teaches concepts as well, such as "in" and "out", or "on top", etc. It teaches several useful signs your child can use to communicate with you more easily, such as "more, all done, please, help", etc. It is recommended for ages to 30 months, but I think for a child with a speech delay it could be much longer. Alex has a short attention span, but this movie kept his attention the whole way through. Even my five year old loved it. You can find out more by going to their website at Baby Babble.

Shape Smart!

I am just amazed sometimes how much Alex knows when we figure out a way for him to show it other than through speech. I've really been trying hard lately to do some "homeschooling" with Alex. Today one of the things we worked on was shape recognition. I took some colored paper shapes and glued them to index cards. I laid them all out on a table and asked Alex to find the card that had the "three - red - rectangles" or the "two - yellow - triangles." There must have been fifteen or more cards, and I was amazed that he got every single one of them correct! He was using three concepts at the same time: colors, shapes, and numbers. I am so proud of my boy. I just wanted to share. I would also like to point out that I have shared some of our favorite websites in the links sections in the left column. Some are links to fun interactive learning for the kids to do and some are great sites for parents to use for homeschooling and home therapy with lots of free printables. Check them out!

Individual Education Program (IEP)

Today was Alex's IEP meeting. It went extremely well... much better than the first one. I explained that my biggest concern as a parent was that Alex receive the most appropriate, intensive therapy program that meets his individual needs as an apraxic child. A continued goal is for Alex's speech intellibiblity to improve. The IEP paperwork goes on to explain his strengths which stated that Alex is functioning above age equivalency in the general knowledge and comprehension domain. He is able to identify six colors and at least two shapes when requested. He knows quantitative concepts and can classify categories up to a five year old age level! (WOW!) He scored at an age of 2.8 (two years, eight months) in Adaptive Skills. Communication skills was a little more difficult. His overall score was at a 2.4 age level. That was a combination of the expressive and receptive skills. He is actually only at an age level of 1.10 (one year, ten months) for expressive speech. He scored a 3.4 in general knowledge and comprehension. Alex is 3.3 years old. Alex will be receiving the extended school year (ESY) summer preschool service. His special education services starting in the new school year will include the four day a week preschool. It will be the same class and same teachers as he has now. Each class is 3 hours long. He will also receive speech therapy for 30 minutes twice a week outside the classroom. I am so pleased. Everything is finally falling into place through my dedication and prayers. I am hopeful that Alex will make great gains with his speech very soon.

Happy Mother's Day

Position: Mom

JOB DESCRIPTION: Long term team players needed for challenging permanent work in an often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work various hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in faraway cities. Travel expenses not reimbursed. Extensive courier duties also required.

RESPONSIBILITIES: This is for the rest of your life. Must be willing to be hated at least temporarily, until someone needs $5 to go skating. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, and embarrassed the next. Must handle assembly and product safety testing of a half million cheap, plastic toys and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product. Responsibilities also include floor maintenance and janitorial work throughout the facility.

POSSIBILITY FOR ADVANCEMENT AND PROMOTION: Virtually none. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you.

PREVIOUS EXPERIENCE: None required, unfortunately. On-the-job training offered on a continually exhausting basis.

WAGES AND COMPENSATION: You pay them, offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.

BENEFITS: While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered, job supplies limitless opportunities for personal growth and free hugs for life if you play your cards right.

Apraxia Awareness Article

I was thrilled to find copies today at the library of the local parent magazine I submitted an article to about apraxia. Right there on the cover in bold letters was APRAXIA followed by the popular quote "Not being able to speak is not the same as not having anything to say." It's funny, but as I read my own words about my personal experience as a parent of a child with apraxia, tears just welled up in my eyes, partly because I'm hopeful that knowledge of this disorder can empower other parents, and partly because in some strange way it was theraputic for me to share my feelings with others. The month of May is dedicated to Better Hearing and Speech Month, to raise awareness of the many hearing and speech disorders and conditions that affects millions. I feel I've taken the first step to share the knowledge I have about the journey we're on, and it's a great feeling to know it could benefit someone on theirs.

Mommy's Little Boy

A special mother I want to be,
for this little boy who belongs to me.
As he looks at me with loving eyes,
he trusts that I'll be strong and wise.
All too soon he'll be full-grown,
this precious boy I call my own,
But 'til then he's mine to hold,
as I watch each stage of life unfold.
I'll do my best in the years to come,
for this little boy that I call "Son."

IEP, ESY, Speech Evaluation

I got an invitation to Alex's IEP meeting today. It is scheduled for May 10th. We'll be reviewing and updating his goals and adding speech therapy services. I am so thankful that Alex will be able to attend the developmental preschool AND get individual speech therapy twice a week for 30 minutes as well from the school system. We'll also add that Alex will be able to attend the ESY (extended school year) program for the summer which is two days per week for two and a half hours, for six weeks. I really have no idea what to expect from the summer program, or what they do to continue reaching his IEP goals.

I also received a call today from the center where Alex's speech will be evaluated for further confirmation of his apraxia diagnosis so we can seek insurance coverage for any private therapies. His appointment is June 16th and the evaluation will take from two to three hours. I'm sure in the meantime I'll think of a thousand questions to ask them... never mind all the questions they'll ask ME!

I'm really hoping to have everything in place by next school year so we'll really have a good plan of education for Alex. I didn't realize that I had to get a separate referral from the pediatrician for an occupational therapy evaluation, but I'm hoping to get this done this summer at the same center as well, due to his sensory and motor issues. If they feel he needs OT, then we can integrate that into his IEP for the Fall. There are just seven more days left in this school year! In the meantime, we're using "Easy Does It for Apraxia Preschool" about three times or more per week. It really seems to keep Alex's attention, but we really have to make the activities fun and interactive and I pick and choose the ones I feel are most appropriate for him. I think having Sarah join in really encourages Alex and it's a great way to get him accustomed to turn-taking. He is very active in what we do at home. He attempts just about every sound or word. I continue to praise his efforts, no matter the outcome. His progress continues to go in spurts. I'm not hearing as many two word phrases lately, but I'm thrilled to hear my boy calling me "Mama!"

May is Better Hearing and Speech Month

Each year the American Speech Language Hearing Association (ASHA), designates the month of May as Better Hearing and Speech Month. This is a month to promote awareness of the various types of speech and/or hearing disorders. To that end, Apraxia-KIDS is participating in increasing awareness of Childhood Apraxia of Speech and resources to help children, families and professionals. Find these resources at Apraxia KIDS Awareness Resources.