Tuesday, August 30, 2011

Speech Therapy - A Mama Reflects and Rants

Yesterday was Luke's last day of speech therapy with his Early Intervention (EI) speech therapist (SLP).  To say that I'm not disappointed with his progress in the EI program would be a huge lie.

I loved his SLP, I really did. She was very nice and Luke adored her.  But I struggled the last few months with how I felt about the therapy that he was receiving.  Speech therapy through EI is not what I expected at all.   It was basically Luke playing with random toys in our living room, while the SLP sat with him, and would try to get him to say basic words.   Up, down, help, more, etc.  Even the amount of time given to us was disappointing. We started out with one hour every other week.  Luke would do well the first week with trying new sounds with us, then the second week wasn't as productive.  The SLP talked our EI coordinator into giving Luke 30 minutes every week.  That went on for awhile, but again, it was frustrating.  By the time she got settled in with Luke and did a little speech therapy, it was time for her to stop and fill out the form giving us instructions on what to work on for the rest of the week.  Out of those 30 minutes, he probably got 15 minutes of solid one-on-one time.  Not nearly enough.

At one point the SLP told me that she felt Luke needed more structured therapy, but that she was limited by what EI would allow her to do, which was the play based therapy.  She came in one week gung ho about being more structured, EI's standards be damned.  Had me find certain toys and items, and we spent one session at the kitchen table.  The next week I was ready for more of that, but it was never mentioned again.  It was very frustrating and confusing.  A lot of that went on - she would give us instructions on what to do, but unless I mentioned it the following week, it was never brought up again.

Then all of the sudden, the last two sessions the SLP busted out with the type of therapy that I had been expecting.   Modeling how to say certain sounds. More structured therapy. It had me wishing that she had done more of that over the course of his time with her.

I'm looking back at how he has progressed over the last seven months, and I'm sad to say very little. Yesterday's session was the same as the others - she was trying to get Luke to say up, down and help. I almost cried sitting and watching Luke struggle with the word up. You can see it on his face, he's thinking about it and wants to say it, but it doesn't come out right.

That of course is the apraxia. Kids with apraxia know they're saying the word right in their head, but they also know that what comes out isn't right. Which makes them hesitant to try, and when they do, there's lots of groping. Along with lots and lots of frustration on their part. It tends to lead to a good meltdown. It's very difficult to watch, not to mention heart breaking.

So here we are, done with EI. Where do we go from here? Luke starts seeing the PROMPT instructor that evaluated him last month, in a couple of weeks. He'll see her once a week for 45 minutes throughout September until we can get the insurance coverage figured out, then go from there. If insurance will accept the neurological diagnosis and cover his sessions, we get 100% coverage (minus $10 copay) for an in network provider. 80% for out of network. The SLP that he will be seeing in September is out of network.

The EI SLP mentioned us coming to see her privately. I'm torn, because I was happy with the last two sessions, but I'm very unhappy that it took us this long to get to that point. I realize she was stuck with what EI wanted her to do, but still. I'm not sure how a SLP can go through therapy with a child week after week knowing that the method they're using isn't working.

Luke will also be seeing a resource teacher with our county's public schools once a week for an hour. Yes, a resource teacher, not a speech therapist. I am completely disgusted with our county. I don't know how you can take a child that has been receiving SPEECH THERAPY for the last seven months, a child that was recently diagnosed with a neurological disorder that is causing their need for speech therapy, and stick them with a resource teacher. I have very little hope for how how much he will progress, and will be ready to yank him from the program if they're not willing to give him the right kind of therapy once we get rolling. I refuse to waste time on therapy that will not help him. Which is how I view the last seven months.

To continue with my rant on the school system, during our IEP meeting a few weeks ago, I of course asked why he wasn't getting a SLP. I was told that the county gives everyone a resource teacher to start, whether they have a speech delay or Down Syndrome (complete lie). They were also nice enough to mention many times that we are more than welcome to go with private therapy in addition to their services. Let's discuss the cost of private speech therapy. In our area, it runs from $100-$150 per hour. Kids with apraxia need 2-3 hours PER WEEK of intensive therapy. Most insurance companies won't cover speech therapy at all, because by law the school system is required to provide these services at no charge to the parents. So what do you do if the school isn't giving you the right kind of therapy, and your insurance company won't cover? You look for every single grant that you can find. And you pretty much go broke. But what can you do? He's worth it.

Our school system is failing kids like Luke. Kids that don't respond to typical speech therapy because they have a disorder instead of a delay are just out of luck in their eyes. The seven months that Luke spent with their version of speech therapy is a huge example - he did not respond to it, and he won't. By law the school is required to make an INDIVIDUALIZED education plan for every single child, and they aren't doing that. And people wonder why I'm refusing to put my children into their public school system.

Sunday, August 28, 2011

Outgrown Egg Allergy?

I hate to say this, but I think egg may still be an issue here.

As I posted the other night, Luke threw up after eating a cookie that I had made using a recipe that called for one egg. The recipe produced about two dozen cookies, so one egg spread out over that isn't much. My hope was that it was just a coincidence, and that he had picked up a bug.

Yesterday, during tropical storm (for us, hurricane for other parts of the state) Irene, I used the extra free time to do some cooking and baking. One recipe I did was for corndogs (which were very good). The recipe called for 2 eggs in the corn batter mixture. Luke had one corndog for dinner, and not too long after, threw up. He seemed fine after that, though getting him to go to sleep last night was a struggle, which is very unusual for him. I had to sit in his room and hold his hand for awhile to get him calm enough to sleep.

Again, my hope was that maybe he still wasn't feeling well, and it was just a coincidence. And maybe it is. But he ate other things yesterday, and other than waking up agitated yesterday morning, acted normal (as normal as far as a two year old goes anyway) all day.

So my game plan is to avoid egg most of the week. Thursday or Friday I'll give him something with baked egg in it, and see what happens.

I spoke with a friend of mine who's daughter has many allergies, including anaphylactic ones. She pointed out that he may not have reacted to the egg during the trial because he hadn't been exposed to egg in over a year, and his body might have "forgotten" that it didn't like it. I pray that it's not the case, and that both nights were a complete coincidence, and that egg is still ok for him.

Finally, we survived the storm. It brought lots of rain and some heavy winds, but nothing horrible for us. We lost quite a few tree branches, but to be honest, the tree needed a good trimming anyway. Thanks Irene!

Friday, August 26, 2011

The Week From....

A nice little recap of the week in ThisMamasHeart's home...

Monday: Cody had his first dental cleaning. The boy screamed like he was being murdered before they even started. Hygenist had me lay on the chair, and Cody laid on top of me. I had to hold his hands down so they could do a quickie cleaning. At one point the hygenist told Cody that he was scaring the other kids. 
(night) Noticed Cody scratching a lot, discovered a cluster of bug bites on his rear end.

Tuesday: Earthquake scared the living daylights out of me. Went on to be made fun of by west coast friends. Working on a plan for them to deal with 98% humidity for 1/3 of the year, snow/sleet/freezing rain another 1/3, and hurricanes for the final 1/3 of the year.  Then we'll see who the weenies are.

Wednesday: (day) Managed to slam the outer 3 toes on my right foot into the corner of a wall as I turned down the hall. My foot has been jacked up ever since. The pain! 
(night) Noticed Cody frantically scratching his upper thigh. Found another patch of the same bumps as Monday night.

Thursday: Took Grumpy Cody to the doctor about the bumps. Was told he has scabies. If you're not familiar with what scabies is, let me enlighten you. They're mites (teeny tiny microscopic bugs) that get under your skin and lay eggs. Oh and they're highly contagious by skin to skin contact. Came home and washed everything he has touched over the last week in hot water. We're talking a good 5 loads of heavy duty laundry. Waiting to see if anyone else in our house gets it.  Can't stop twitching.

Friday: Topical Storm Warning! Hurricane Warning for the place in the Northern Neck (NNK) of VA where my parents have a house. Which means no trip to NNK this weekend. Which means none of my usual end of the week break.  Braved a trip to Sam's with every one else in our area today, complete madhouse.
(night) Made Salted Double Fudge Cookies. They are GOOD. They call for one egg, which is good because we're supposed to keep egg in Luke's diet. Luke had one and loved it. Then went on to puke twice about 10 minutes later. Super. Panic moment. That's how his anaphylactic reactions initially present. Watched him like a hawk for the next hour, everything else was normal, so put him in bed.

Went to check on him a little bit ago, and he had puked allllll over his crib. Down the wall. Puke in his hair, on his clothes, his stuffed animals. He looks like he doesn't feel well, but I don't think it's food allergy related. I'm assuming it's from him licking the shopping cart handle at Sam's today when I turned my back for 2 seconds.

I want my mommy.

Tuesday, August 23, 2011

I Feel The Earth Move....

Wow, what an interesting day. Just before 2pm today we experienced our first "major" earthquake. It doesn't compare to any of the big ones that places like California and Japan have experienced, but it was big for us! The epicenter of the earthquake was about 80 miles from where we live.

My husband had just gone downstairs to hang our new address plaque outside. The boys were playing in the living room, and I was putting stuff away in the hall closet. I heard a weird noise, and felt the floor move. My first thought was that our dog had jumped on the couch to look out the front window (he's a big boy, and the floor moves when he does this!). Then the moving got more intense, and it got louder. I mostly noticed the noise coming from the kitchen, and it sounded like the table and chairs were rattling. So then my thought was that our dog was having a seizure or attacking one of the cats. At that point he ran past me and dove under our bed (he's my protector). So my thought jumped to the large trucks down the street that had been working all morning. But then it all went crazy - the walls and floor were shaking, the large front window was rattling. It was such a LOUD noise, everything moving and rattling. I ran for the large entry way to the kitchen and grabbed Luke. Yelled for Cody to come with me, just as my husband ran up the steps. I just kept asking him what was going on. It wasn't until it was almost over that I realized it was probably an earthquake.

I won't lie, I was in panic mode. My voice was a a much higher pitch than normal, and I was shaking. Poor Luke, my sensitive little guy, started crying as soon as he realized I was scared. Note to self - stay calm during next earthquake!

We went outside, and most of our neighbors did the same. A few minutes later the news reported that it was a 5.9 earthquake.

Virginia doesn't typically have this type of activity. The last earthquake at this magnitude was over 100 years ago. We have had earthquakes in the past, but they've never been anything you could feel. You hear about it on the news, and that's about it.

Around 8:00 tonight I was in the kitchen leaning against the counter, reading, while the boys were in my bedroom watching tv. As I stood there, I felt *something*. Nothing major, but enough for me to stand there wondering if I was imagining things, or if I was really feeling something. Sure enough, a 4.2 aftershock was recorded at 8:04.

I really think I'll stick with my east coast living. I'm not sure I want to live somewhere that has this kind of thing happen more often than every one hundred years or so. I prefer tropical storms and hurricanes that give you a nice long warning that they're heading for shore!

Tuesday, August 16, 2011

Peanut Challenge

I wish I had some exciting news, but I don't. Not because Luke didn't pass the challenge, but because it didn't happen today.  Luke has an upper respiratory infection, has had it since last week. The allergist's office wanted us to evaluate how he was doing on Monday, and either keep the appointment or cancel. He was still wheezing yesterday, and his chest was still pretty rough sounding, so we had to reschedule. What really sucks is that they didn't have another opening until early October! Grrr. He's sounding better today, but still not 100%.  I'm anxious to get the food challenge over and done with, but I wouldn't have felt comfortable taking him in for it unless he was completely healthy.

Wednesday, August 10, 2011

Apraxia and Supplements

It has been brought to my attention that SpeechNutrients™, a supplement containing fish oil and vitamins K and E (all of which are recommended for helping children with apraxia) is not a recommended brand. This is due to the excessive amounts of Vitamin K and E

According to the product’s chart, the recommended dose of 4 capsules per day (2 capsules twice per day) has children under 4 taking 10,000% of the recommended daily allowance of vitamin E (according to their information, no allowance has been set for children under 4). People aged 4 and over would be taking 3,330 % of vitamin E and 5,750 % of vitamin K. Since they are vitamins, the doses are not as regulated as medication, so 40 pound 4-year-olds are lumped in the same category as 250 pound, 40-year-old men.

I ordered this product for Luke because it was labeled as peanut, egg, etc free.  Thankfully we just bumped his dose up to 2 capsules a day, so his levels haven't been extreme.  I am discontinuing use of this as of today, and will be switching to Nordic Naturals instead. More information about SpeechNutrients™ can be found here.  A good example of needed to thoroughly research before giving any kind of supplement.  I was so excited to find a fish oil supplement that did not have a peanut warning that I jumped the gun.

Friday, August 5, 2011

Developmental Pediatrician

Yesterday was our visit with the developmental pediatrician. We saw Dr. Chuck Conlon, located in Bethesda, Maryland. If you've stumbled across this blog and are looking for a good developmental pediatrician in the VA/MD/DC area, I highly recommend him. He was formerly with National Children's Hospital, but is now in his own practice. We were very happy with the visit. I will warn you though, the visit is pricey - $575 for a 2 hour visit, and they don't accept insurance. You can submit a claim to your insurance company though, and hope for reimbursement.

Dr. Conlon was very thorough. The first hour was spent with my husband and I talking with the doctor, and Luke played quietly with the toys in the room we were in. The second hour was spent with the doctor focusing on Luke. He interacted with him, asked lots of questions (to us). His diagnosis for Luke was apraxia, as I had suspected. Part of me was relieved to have a diagnosis. This was mostly because of the insurance issues. I had a strong feeling that Luke was dealing with apraxia from the moment I first read about it. And once again, mom's intuition has proven correct. If I've learned anything from mommyhood, it's to listen to my intuition. If something doesn't seem right, don't ignore it! Moms know their child better than anyone in the entire world.

I am sad too though. Sad that Luke has yet another hurdle to overcome. Sad because I know it means my sweet boy will have a lot of work ahead of him. Sad because I would give anything for an expert to tell me that I'm wrong, and that he'll start talking any day now. I would give my right arm to hear him say I love you. Or hi mommy. Or to even chew his big brother out when he's aggravating him.

Luke's apraxia is not considered severe. Many kids with apraxia will not have a single word. Or may have one or two sounds. Luke doesn't have many, but he does have some. This gives me hope that he will respond well to therapy.

The plan now is for Luke to begin therapy with a PROMPT instructor in September. He will see her for a month, 45 minutes a week, and hopefully during that time insurance will accept the diagnosis and begin coverage. We'll re-evaluate his needs once that month is up, and create a new plan.

He will also be transitioning from early intervention to the school system at the same time. I don't have as high of hopes for the school system helping him. According to the doctor, our county did not do as they should have for Luke with our IEP. They did not give him a full evaluation, and they did not tailor his services to his individual needs. At this point I have lost most hope in Prince William County being of much help. We will begin both services, and if I need to I will request another IEP meeting, this time using an advocate. I will make sure that Prince William County Child Find gives Luke the assistance that he is legally entitled to.

Tuesday, August 2, 2011

Child Find and Developmental Pediatrician

Some good news! Yesterday we received a call that the developmental pediatrician that Luke was too see in December had some cancellations, and we've been moved up to this Thursday! I'm hoping that the doctor will give us an actual diagnosis so that insurance will cover private speech therapy starting next month.

Today was our IEP meeting with Child Find. I was prepared to duke it out with them, but it went well. They are giving Luke 60 minutes a week, in our home. The only thing I wasn't happy with is that he will be getting a resource teacher. I wanted to fight for a speech therapist, but apparently the county does not provide one until down the road if the child starts talking and has articulation problems. I plan to look more into that, but for now, we agreed with what they proposed. My hope is that we'll get the diagnosis, insurance will cover speech therapy, and he'll get everything he needs from a private PROMPT therapist. If it goes that way, the county services will just be a bonus anyway.

Monday, August 1, 2011

2011-2012 Curriculum

This is my first year homeschooling, and I'm sure I will make changes to the curriculum as we go along. I'm hoping that I spent enough time researching before I made a decision - it sure felt like I did! We are currently going through review to learn what Cody knows and still needs to learn to be prepared for kindergarten. For this I am using Confessions of a Homeschooler's K4 printable curriculum. I am disappointed to learn through this how much Cody was NOT taught in preschool, considering the preschool that he went to is known for their academics and preparing kids for kindergarten.  Basically what he knows is what I taught him before he started preschool last fall.

School will start September 6th, which is the same day that public schools start here.

Luke - Tot School
Lots of hands on play!
Speech Therapy 2x a week

Cody - Kindergarten

Phonics - The Reading Lesson, All About Reading 1, Explode the Code
Math - Horizons K
Geography - Evan Moore Introduction to Geography
Misc - Unit Studies for science, history, etc., Sylvan Word Games, lots of printables, living books to cover science and history topics.