I feel like this is so important because in the beginning of the process with Henry I felt lost, and where ever I turned I got puzzled looks when I mentioned apraxia. No one had ever heard of it, I know I hadn’t. And why is that? Why are doctors and practitioners so comfortable telling concerned parents to take the wait and see approach when it comes to speech, instead of a simple evaluation? There are a lot of “late talkers”, but also so many children that will not find their words without some help. In apraxia’s case, it means very specific, targeted and frequent therapy. I’m so happy I trusted my gut and pushed back. Parents know their child better than any doctor! If you suspect their is a problem beyond just being a little behind, you are likely right. It took me months to find that Henry’s struggle was with apraxia.

After starting Early Intervention at 19 months old and having therapy many times a week, I knew something was wrong when months and months passed without any progress. How could that be? Henry could say “ma”(not to me, but as a babble sound),”ah” for “hot”, everything else was “eh”. Mostly he pointed an grunted. He was smart and observant and you could see his frustration in not being able to communicate. We had already started with some basic sign language even before Early Intervention, but as time went on we really had to build on that to give Henry some means of communication. It wasn’t long until Henry had close to 80 words in sign language, and could combine some. Did I mention he was smart? :) I was so so thankful for that small window into his thoughts, because nothing is more frustrating than not knowing what your child needs. (And btw, it is a myth that teaching your child sign will slow down his ability to talk…it only helps!)

It wasn’t until we got a diagnosis that I realized that his current style of therapy was ineffective and he needed more frequent, intense and specific therapy for apraxia. Once that was implemented, we began to see some progress. We started occupational therapy as well when we discovered he had sensory integration disorder, and for some fascinating reason movement paired with speech attempts really helped him produce some new sounds. We felt like we were finally finding ways to help Henry.

I was surprised and heartbroken, however, watching him go through various therapies (usually 7 appointments per week) and seeing that it was such a struggle even though he was trying so hard! He watched the therapist’s mouth intently, he just couldn’t get his lips and tongue to follow. These are things that come effortlessly to most, but are so difficult for children with apraxia. This is when I started to learn about motor planning and various therapies to help. I found Nancy Kaufman who developed the KSLP technique that was a real breakthrough for Henry. Individual sounds started to come… da, ba…etc. After some months of practice he could combine these sounds, which isn’t easy for an apraxic child because of the planning required to move your mouth from one position to the next. Then came some words, mostly rough approximation, but soon other people aside from my husband and I began to understand them. Then came the exciting combining of words…two word phrases..three…four!! He took off from there over a two year period.

Today, Henry is four. He still gets speech therapy 4x a week, but his progress is remarkable. This is credited to incredible therapists, the right therapy, a lot of work at home and fierce determination and hard work on his part. If he were to meet a new therapist today, without them knowing his history, I doubt he would even carry the apraxia diagnosis anymore. He still struggles with some words, mostly with clarity in long sentences…and he’s behind on the language component, but there is a huge, gleaming light at the end of the tunnel that I am so grateful for. I wasn’t sure I would ever see it. People who meet him now will not know how hard he worked to get where he is, that it still takes more effort and thought to speak where it comes so easily for others. Or that it took 6 months of therapy to say “i” for “hi” and year of therapy to say “moo”…putting “mmm” with “ooh”. Those are all huge victories and not ones I will ever forget. We don’t take any words for granted in this house, even the occasional slip of naughty ones!

My goal when this all began was to get aggressive and focused about treatment while his brain was still forming and such a sponge, and to get him caught up before kindergarten. My hope was that when he was older he wouldn’t remember the struggle, and that the therapy and hard work would happen when he was young and I could still disguise it as fun. I hoped he wouldn’t feel he was missing out on other “kid stuff” or being treated differently by his peers because he couldn’t be understood. Well we are there, he did it! Henry is social and loving and confident. I still do a fair amount of translating for him, but he gets his point across all on his own most of the time. I watch with pride on the playground now as he approaches other children. They don’t stare and him and then take off because they don’t understand him. Now, instead, he may suggest going on the slide, playing pirates, or tag…and they get it. They hear him, they respond and he finds a new playmate! This is a far cry from the days when he used to bring hands full of wood chips to another child and grunt and point in an effort to interact. What a long way he has come!

Often, unless you are a parent of a child newly diagnosed with apraxia, it is hard for others to understand the fear and anxiety that comes with it. I was so worried he may never clearly communicate, he may not have friends as a result or be able to have his needs met on a daily basis. Almost all of my anxieties in regards to apraxia are quieted now. He may have struggles with reading, spelling or writing, but we will cross that bridge when we get to it, if we do at all. Right now we are focused on his successes and we are enjoying hearing his stories, jokes, and even a few fibs here and there. It’s magic!

Many wonder why I still focus on apraxia while we have a new hurdle with Epilepsy and other neurological abnormalities. Well, for me, while we are overcoming apraxia the struggle is not soon forgotten. My heart goes out to other parents starting their journey with apraxia and spreading awareness in general is a priority of mine. That’s why I’m so happy that apraxia has an official day dedicated to this. It’s a jumping off point. Today Henry is wearing his apraxia shirt and passing out blue and white bracelets we made to his teachers and friends. Posters are up and information is going out the parents. It’s a step in the right direction and I’m committed to getting the word out every May 14th and year round for that matter. I don’t think Henry even really understands what this is all about, but I knew he felt special today. One day, we will explain it to him, we will show him videos and this blog. We will show him how far he’s come and how hard he worked. I hope he will feel the intense pride in himself that we feel and know that it’s made him a stronger person.

Speak up for those who can’t! Find out more about apraxia at http://www.apraxia-kids.org

Here it is:

Dear Henry,

This may not seem like a big deal to you, or to many people actually, but you can finally say “Mooo!”. It just popped out the other day while we were looking at a farm book. Do you know your Mommy and your therapists have been working on this word with you for over a year? Your mom has been running around mooing like a cow hoping one day you could put the “mmmm” with the “oooo” and you did it!  From a motor planning perspective this is a huge gain, but in general it’s just plain awesome and you love saying it!  I see your pride and I think you realized what you’ve accomplished.  You’ve been wanting to say it as much as I was waiting to hear it.  Sigh. I’m so happy.

Love you
Mom

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Henry had a beautiful day on the day of his actual birthday as well as the day of his party on Saturday. We were lucky, both seizure free days we think! I was in a panic that he would have one in the middle of his party, fall asleep for three hours and then I would have to send everyone home. Thank goodness, it went off without a hitch. We had a brief time when singing to him that I thought he was having a seizure, and it’s still a small question mark in my mind, but I’m choosing to push it aside.

This was the first birthday that I wasn’t wondering if he would be able to blow out his candles. Henry has pretty great breath control now and can blow bubbles and blow out candles and all that fun stuff! Not only can he say “Happy Birthday”, he can sing the song all by himself! This was a huge year of development for Henry, especially when it comes to his speech. I couldn’t be more proud!

Henry had a pirate themed party this year and I just have to share a few pics from this past week!
best,
Linda

Look for an upcoming giveaway on Signing Time sign language DVDs! These were a big help with Henry before he had words and eliminated a lot of frustration for all of us.

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We find ourselves so fortunate to have found Nancy Kaufman and her methods. Henry started speech therapy at around 20 months, and the Kaufman technique at around 26 months. He will be 4 next month and has made tremendous strides! He still gets speech therapy 4x a week at school, but I have a feeling he will be all done by kindergarten, that is the goal. For those of you that have read my blog, and are at the beginning of your journey with apraxia, this should give you hope. I remember a year ago even, wondering if Henry would ever have “normal” communication skills. I worried, worried, and then worried some more. I feel blessed that apraxia isn’t the top thought in my head every day anymore. 

I can relate to the challenges that come along with treating apraxia and advocating for your child. From the therapy costs, insurance battles, and the costs of materials that may help. I’ve been there. I’m still there. I’m excited that Henry has mastered the first Kaufman kit and has moved on to the second. I know there are many of you out there struggling on this journey with apraxia and the cards are worth it, but pricey!  If you could use this first kit, please enter this giveaway and if you like leave a comment telling me a little bit about your child.  A winner will be picked on March 15th. Good luck!

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We appealed through the State of NY and they later sent us a letter saying they were sending all of the info to an “impartial” 3rd party in Massuchusetts for review by medical professionals. I really thought this was going to work in our favor and this was all going to end well. I was shocked to receive the final denial from them along with some notes from the three professionals who reviewed the case. I was shocked especially to see the notes from a SLP stating services weren’t necessary. I just was blown away by this, especially when considering his neurological diagnosis and our supporting letters from the neurologist! I am convinced the insurance company must have these “professionals” in their back pocket because there is no good reason for a denial. My neurologist was even very shocked, saying she had never seen anything like this before and that it didn’t make sense.

Blue Cross is SO SO SO lucky that we are fortunate to have a fantastic SLP at school and that they added more sessions to compensate for this denial. Otherwise I would come after them so hard they wouldn’t know what hit them. This is all despite in their letter saying, “this is final, please don’t contact us on this matter again”. We are dealing with so much right now outside of his speech that I had to let this go. Like I said, they were lucky. I can make a huge pain in the butt of myself if the cause is right. But Blue Cross is permanently on my s*%t list.

I can’t recommend this conference enough! I only wish I could have attended all of the seminars, but you have to pick and choose and just find the ones that fit your situation at the time. If I had gone last year, I would have chosen some different classes. All more the reason to go every year if you can! I just couldn’t pass up going when it was so close by.

I particularly loved the seminars with Ruth Stoeckel and David Hammer. Also, there is something so profound being surrounded by so many people who completely understand what you are going through. I highly recommend this conference!

I really, really thought based on the appeal letter I wrote and the supporting letters from the neuro and SLP that we would win. I also thought they couldn’t deny his cute little face considering I included a photo of him too! Cold, cold hearts over there at Blue Cross. It was kind of like waiting for a college acceptance letter. When it was so big and fat I momentarily got excited…then I thought, wait, what could be in there? Why of course! It’s pages and pages of complicated information in nonsensical language about how if I don’t agree with them I need to take it up with New York because they are over it, and me, and I need to get a lawyer to understand it all.

I called the neuro’s office and they agreed to write another letter on our behalf including Henry’s new diagnosis, and I’m hoping the genetic anomaly card will win us this hand. Who knows. It will take another month minimum to get it figured out. Meanwhile Henry is getting maybe 2 speech sessions a month and the pressure is on to practice more at home. The fear of regression is looming.

Now we are wavering for a few reasons, the main one being financial. We are currently without insurance coverage for Henry’s therapy and it’s $220 a session…two times a week. Already we can’t afford it. The CASANA conference is $275 per person not including hotel, gas, etc. Side note: Is it just me or do any of you now look at prices in terms of how many speech sessions it would cover. For example, a much needed vacation? Well, that would be like 10 therapy sessions! A new tv to replace our half dead one, 3 or more therapy sessions. You get the idea. Oy.

Anyhow, the money thing is tough. I’ve been trying to weigh the cost vs. benefit for a while now. I’ve been studying the seminars at the conference and the speakers trying to figure out if we could get enough out of it to warrant the financial strain. Henry is coming along nicely in his speech and we aren’t new to this diagnosis, so some of the sessions wouldn’t be as useful for us at this point. I am, however, really interested in the ones regarding learning in school, reading, socialization, and neurological factors.

Right now, if you asked me today, I’d have to say that regretfully I’m not attending. But there is this teeny tiny voice in my head that is nagging me to go. If it happens it will be a last minute decision. If anyone else out there is going, I’d love to hear what you think

Henry was a challenging baby. He rarely slept more than an hour straight until he was about eight months old. He suffered from severe reflux and food allergies and until we had that figured out he was uncomfortable most of the time. He cried… a lot. I slept very little, I was on an elimination diet so I could breast feed him allergen free (so I was hungry all the time) and I think I was running on pure adrenaline… and crazy love for my little guy.

It’s amazing how quickly time passes. I always would say to myself, “once we get this under control I’m going to start working out”, or “after the holidays I’m going to get that manicure I received a gift card for”, “I’m going to find time to hang out with my friends…eat right” etc etc etc. You get the idea. Well, my manicure gift card has since expired, so that tells you how I’m doing!

It’s natural and necessary to put your little ones first, and I would do anything for Henry. What I am learning, however, is that saying to yourself that you are going to do something for yourself down the road, when you go over a hurdle or reach some sort of milestone, is really just a very complicated form of procrastination. In our situation, every time we seemed to get a handle on some condition of Henry’s (like reflux) another one popped up (like apraxia) and another (like hypotonia and sensory processing dysfunction). I really felt in these last months though that I could see the light at the end of the tunnel on this road called apraxia. We are beating it!  And during that brief respite from the intensity of advocation, research, therapy and overall worry, I took a good look at myself. Aside from my parenting abilities I wasn’t really liking what I was seeing. I looked about five years older, have gained over twenty pounds in the last two years, and it looks like I haven’t slept in as long as it took me to gain that weight. Aside from Henry I have been finding joy in very little. This is a big problem. There are some changes that need to happen that are obvious…like exercising, getting better sleep and taking time for myself. Other changes are ones where the answers don’t come so easily. I was really working on figuring this all out when another bomb was dropped in our laps.

Henry’s seizures and recent diagnosis of a brain tumor/cortical dysplasia and epilepsy have hit me harder than anything else thus far. Mentally I am at a really low point even though I know things could be so much worse. I have been unable to motivate myself to start exercising or going out and having fun and all of the other things I know would make me happier and a better mom. I feel like a deer in headlights, frozen and unable to clearly think what my next step should be. I don’t really feel like I have the time or the luxury to be in this “mood”. I need to get my shit together, pardon my french. I spend half my time with Henry marveling at his amazing personality, progress and overall cuteness, soaking up every drop of him. I spend the other half wondering if what I’m seeing his truly him or a by product of his “tumor”, is he slurring, is he sick, is he about to have a seizure, is his tumor growing right now…when is the other shoe going to drop? I can’t live this way. The uncertainty and enormity of everything is overwhelming me.

So how do I, amongst all of this, find the time to take care of myself too? How to I motivate to do all of these things I should be doing for me? It feels selfish somehow, yet necessary for my sanity. I just can’t seem to take the first step.

I have had issues with them in the past regarding Henry’s coverage for therapy. I have made appeals and thankfully won. I was gearing up as we approached the cap of our 45 visits per year that were allotted, and assumed that was the next battle on my hands. I was preparing.

I was not expecting full denial of coverage for him based on the fact that he is now attending preschool. I have heard of this happening, foolishly I didn’t think it would happen to us. I had already fully explained the necessity of one on one intense and consistent private therapy for Henry…and I seemed to convince them. Now their view is that the school should be responsible for all of his therapy moving forward. We have a lovely and well respected speech therapist at his school, but he has a great connection with our private SLP and has made such progress with her and I don’t want to lose momentum. Why would we change something that is working? Why is it so hard to get our kids what they need? It makes me nuts.

I contacted BCBS again to go through the details of the appeal process and then I contacted CASANA for some guidance in drafting a letter. They were kind enough to share a sample appeal for a similar situation and I modified it for our case specifically. I got amazing letters from our SLP and neurologist  to support the appeal and I included the cutest picture of Henry I could find. Now we are waiting fingers crossed.

ps. I have another letter to BCBS stating how I really feel, holding nothing back. It was never sent of course, it’s something that is drafted only in my head and replayed every time I have to deal with their idiocy. I thought I would share it here, but then thought the foul language might offend :)

Henry started having seizures. One in Feb, one in March, and last Friday he had 4 within a couple of hours and was admitted to the Children’s Hospital. I will go back at some point and fill in the details of what happened because I feel like it could be relevant to other parents out there, but for right now I have to give the short story. Henry had an MRI last week and it came back abnormal. They aren’t sure (grrr) but it’s either a brain tumor or a cortical dysplasia on the left temporal lobe of his brain. They believe it’s the origin of his seizures. Interestingly enough, it’s also in the speech center of his brain but they can’t say his speech and sensory challenges are caused by this. We are reeling. I alternate between being numb and going through the motions, to complete fear and devastation with uncontrollable crying. I feel once we start to get a handle on one thing, something else is thrown in our lap. The ironic and awful tidbit in this huge pot of well, let’s be honest, total crap, is that the cortical dysplasia can lead to regression in language amongst other things. Speech is obviously not the main issue in this situation, but I have to admit that part hit me like a ton of bricks.

So I’m just hanging on…trying to educate myself about the newest elephant in the room and how we are going to beat this thing and not let it destroy us. I wish I felt stronger mentally and physically before meeting this challenge, but I need to find the strength somehow for Henry. I’m just… I’m still not sure I understand how this all happened and how it’s possible. We will figure it out. We will!  In the meantime, the blog will go to the back burner once again. But I do hope to catch up one day and fill in the blanks of the last six months.. because they were monumental in both good and bad ways. I appreciate you all reading, and I hope your little ones are doing well ~ Linda

I remember when he was a newborn, arching, and screaming and I just knew he was in pain. The pediatricians threw around terms like colic, gassy, fussy…topped off by, ‘hey get a babysitter and take a walk around the block so you don’t have to hear the crying and screaming for awhile”. Yeah, I don’t think so. This is when I first learned, the hard way, that doctors don’t know everything, that you have to trust your mommy gut…and that you have to advocate for your child for them to get the care they need. These were hard months and I questioned myself often and thought to myself, gee, wouldn’t it be nice if he could just tell me what was wrong. Is he gassy or is he really hurting? Does he feel sick or his he just tired?

Of course I knew I had to wait until he learned to talk and expected this would happen in a typical time frame. Then in time I realized he wasn’t talking and I had bigger issues on my hands. All mommies come to know their child in such a way that you can almost read their mind and feel their pain when they do. On the other hand, a little verbal confirmation about what is happening is always nice.

So last week when I was in the kitchen making lunch and Henry came to me and said, “Henee fwow up” (Henry throw up)..and “bucket”, I was in shock and delighted all that the same time! Yes, he was about to hurl all over my kitchen floor and my poor baby wasn’t feeling good… but he told me how he was feeling and he had the words to do that! It was nothing short of amazing! These are the things I don’t take for granted and I’m sure I wouldn’t full appreciate if he didn’t have apraxia. I’m grateful for that. So go Henry!!

ps… he threw up once and was totally fine afterwards, so I feel ok celebrating just a little bit… :D

Mother’s Day is the perfect time for this. I remember last Mother’s Day vividly along with the painful emotions that came along with it. I really wasn’t sure if I would ever hear Henry call me mama… and I worried if he would ever be an effective verbal communicator. It was so hard to feel so connected to my little one, but that same time have this huge wall between us due to lack of words. And I knew my boy had a lot to say!

This year was so different. Mother’s Day was spent in the car, driving home from Michigan after our second visit with Nancy Kaufman, and likely our last. It was a long day driving…Chris and I in the front, and Henry in the back. He mostly watched movies and napped here and there, but he also talked. TALKED! I never could have anticipated this last year. Chris and I discussed his therapy sessions with Nancy and how impressed she was on how far he’d come. We were amazed at the little personality unfolding before our eyes, and we were amused by all of the thoughts and stories he could now share with us.

We didn’t go to brunch or a traditional celebration for Mother’s Day, but it was truly the best one yet. It was a day to reflect and be thankful and I’m so grateful to be Henry’s mom.

Henry was admitted overnight to Hasbro Children’s Hospital in the beginning of May for a 24 hr video monitored EEG. I remember being stressed out about the test. Looking back though, most of my anxiety came from wondering how the heck we were going to keep him calm and occupied for 24 hrs with all of these leads on his head and with him literally being on a very very short ‘rope’ so to speak. I packed every favorite toy I could think of, craft projects, books, cars, you name it! Of course his greatest interest was his own personal tv, hovering above his bed where he could watch as much as he wanted. (I mean if there was a time for breaking all of the tv rules, this was it). He watched Finding Nemo at least five times. I now know the words by heart. He also loved being served a variety of foods in bed. Because of his food allergies and not being sure if he would eat what they had, he often had the makings of two full adult meals in front of him and he acted like he was getting room service at the Ritz!
Aren’t kids funny? The parents carry all of this stress and worry and have these experiences permanently imprinted on their brains. Kids on the other hand, seem to make the best of every situation and find a way to have fun. There is something to be learned there.

If you read my most recent posts you know this isn’t all ending super well, but I swear at the time I thought I was going through these series of tests to rule things out, which was necessary, but that they really wouldn’t find anything. Little did I know…

Since after Christmas the whole family has been sick in one way or the other, constantly…no joke. Henry has also transitioned from a crib to a toddler bed. The word transition to me conjures an image of something going smoothly, well, this is not! We are still trying to make it work. This along with some sudden changes in his behavior has created all sorts of challenges in our daily lives.

After finally seeming to be over the hump with illnesses in this household, Henry had a seizure. This was so scary, and something I worried might happen one day given my husband’s epilepsy. Obviously figuring this out and caring for Henry has been a priority…thus the “MIA” status :)  I look forward to catching up, so look for many posts to come. I hope you don’t feel bombarded!

A couple of weeks after that I noticed he was using “ah-poh” for other words he already had or had approximations for…mainly for “up” and for “help”. It seemed strange because up is an easier word to say than apple and he had a great pronunciation for it already as well as it was  a word more commonly used throughout the day. I tried not to overreact, but continued to correct him saying “good try, but say “Up”" or whatever the case may be. Sometimes after modeling the word he would get it after a few tries, but the next time he said it on his own spontaneously it would revert to “ah-poh”.

We have been trying to work on this in therapy and frequently at home. Now sometimes he adds “ah-poh” to the end of his approximation for “up” or “hep” (help).  It’s been a few months now and we still can’t get it corrected. I worry it’s going to get harder as more time passes and that it will get ingrained in his brain somehow. I feel like we have been doing everything we can, that we know of, and all we can keep doing is offering the correct model of the word.

I’m wondering if this is a typical apraxia thing or if this is attributed to something else. I guess with all of this progress he has been making I should stay prepared for these minor setbacks. Apraxia is a mysterious thing!

Here is a little information from CASANA and a link to registering…please take the time to do so, thanks!:
“What is the Childhood Apraxia of Speech Research Registry?  The Registry is a list of as many individuals with Childhood Apraxia of Speech (CAS) as possible, containing information about each child’s health and developmental history. Once data is collected and enough children are registered, this list eventually will enable authorized researchers to find possible subjects for research projects and offer families an opportunity to participate in research, if they chose. Finally, the Registry will allow researchers to examine trends and data about groups of our children with apraxia over time.”

http://www.apraxia-kids.org/site/c.chKMI0PIIsE/b.7831609/k.720D/Apraxia_Research_Registry.htm

Christmas was extra special for us this year because Henry was light years way from where he was last year in terms of understanding the holiday and being able to express his excitement. His sensory issues have also improved and that made the holiday much less stressful. He was excited about everything…from the lights to the trees, to the music, the books and the parties. And of course, Santa!

Last year, one of Henry’s very few approximations was ho, ho, ho. (otherwise we had mama & dada (as repetitive babbling) and ha, for hot). I remember being really excited about it and then it disappeared. This year we could get a ho, but for some reason, not a “ho, ho, ho”. By the end of the season after working hard on it, we could get “ho, ho”.  Apraxia is such a strange thing. Anyhow, what was funny is that in Henry’s mind everything about Christmas was “ho”. Santa was ho, Christmas was ho…etc.  Christmas trees were “ho tee”,  seeing santa or sitting on his knee was “ho knee”…and now comes the really funny part.

Henry got a book last year about Santa eating too many cookies and sweets at each house he visited… so much so that his buttons popped off of his jacket and he couldn’t make it back up the chimney. This was one of Henry’s favorite Christmas stories and we read it again and again. After a week or two, Santa went from being “ho” to being “big ho”. Then if someone or something was big or oversized, it was a “big ho”. Now I get what he was saying and I think it’s rather cute, but imagine what strangers are thinking when he points to someone, Santa or otherwise, and shouts “Big Ho!”. (this happened). It’s just one of those things I will never forget.

Apraxic kids use approximations all the time, and sometimes they come up with some pretty funny ones. This is my favorite so far!

I hope you all had a happy holiday!