Simmi Makes Muffins

Simmi has had her first experience making muffins, and let me tell you, this child was in heaven! She loved pouring in all the ingredients, stirring it and of course putting her hands in everything. Her fingers would flitter as she stuck her hands in the agave nectar, she loved putting both hands into the flour mixing it and then taking them out and clapping her hands so that the flour would fly everywhere. She wanted to see, smell, touch and taste throughout the process! I was smiling from ear to ear as I watched her make a mess everywhere. LOL It was so precious and a memory I will have forever!

Making muffins or any baked treats for a child with multiple food allergies can be a very EXPENSIVE task, but one that is well worth it. Stocking up on all the ingredients cost us around $200, and I feel that our first experience just making the muffins paid for the whole thing. LOL It was priceless to see her so involved and attentive. From the time Simmi was an infant, she was not able to eat bananas. She got a reaction almost immediately from them so we just avoided giving them to her. Well, the muffins called for 1 1/2 cups of mashed bananas, so I felt that there was no time like to present to offer her a few slices before we put them into the muffins and see if she reacts to them. To our delight, she didn’t have any reaction at all, so I went ahead and put the mashed bananas into the batch. It makes me feel good to know that we can add one more food to her diet. So far we’ve made a few things from the allergen free cook book we have, and I’m impressed with how the recipes came out. I’ll post the book as well as the recipe we used for making the muffins at a later time. Right now I’m really busy working on our house and I can’t stay online too long at all.

Tags: banana muffins, multi-sensory baking, multiple food allergies

As my thoughts begin to migrate towards the end of summer, I’m left wondering, “Where do I find great therapists?” I gave Simmi a break from her therapies because she was no longer receptive to anything they had to give, she was angry, hostile and would just run and hide after a few minutes of them being there. “How much is too much therapy?” I thought to myself. I began to ask other parents who struggled with a similar dilemma, and I found a consensus among them. The resounding theme seemed to be that if a child is no longer receptive to therapy, it isn’t the child who is burnt out, but instead its the therapist who is no longer able to reach the child appropriately.

Simone did very well during the time she had therapy, but as the months had passed, things began to change. After a while, it seemed like she would just tolerate the therapists being there with her until finally she would just run and hide. Now, don’t get me wrong, I believe that the therapists she had did the best they could, but I need therapists who will go above and beyond the call of duty so to speak. I need therapists who understand Simmi’s limitations and strengths, not just those who will throw out a suggestion like “I think you need to read the book ‘The Out of Sync Child’” yet they have never read it themselves nor could they tell me what that beautiful book was about. I suppose that if they did actually read it, more progress would have been made in how they structured their therapy time with Simone. For anyone that doesn’t know what The Out of Sync Child is about, basically its a book about children with sensory processing disorder.

There is one therapist that she did completely enjoy, and that was the occupational therapist. This therapist was AWESOME, and knew exactly what to do, what to bring each week and gave wonderful suggestions on how to reach Simmi during the week. She understood Simmi’s sensory problems and found ways to keep Simmi on task and engaged. Then she broke the news that she was cutting down on her work load to take time with her son, I must admit that I was heartbroken. When you find a good great therapist who reaches your child on a level they can finally “feel”, engage, smile, attend and stay on task, you want it to continue. This therapist understood her auditory challenges, and how “chatter” from a therapist or speaking in a loud voice will tune Simone out immediately. Simmi can’t handle a lot of talk from others and the tiniest sound can distract her. She can hear perfectly fine, but the sounds of our voices talking causes her to immediately interrupt our conversation and instead she will chatter on. For Simmi, chattering is her way of trying to gain control of what she doesn’t understand. We can’t have a conversation with Simone. We can’t even ask her something simple like “What color do you like…red or the purple?” That is non-existent. We know what colors she enjoys by what she gravitates towards. If we want to show her something new and try and explain how it works, no can do! Reaching her on a verbal level is increasingly difficult. Our Occupational therapist was replaced and Simmi was never able to warm up to her. So, can we find a therapist that can work with this type of auditory processing problem? How about visual processing? If you can’t show her something because she objects to even looking at the object on a page, another way of reaching her becomes necessary. Shiny things work for her, but it seems as though only a visual specialist likes to bring those objects. Bright color objects don’t always work for her, but shiny things or things that light up always seem to do the trick. If it helps her attend…will they be willing to incorporate that in to their sessions each week?  These are just some of the very simple issues I have with therapists. Not all, but some of them. They understand, bring along shiny things and after a few weeks, the shiny things don’t come anymore. She NEEDS shiny objects to attend right now. I say “right now” because what is important to me is that we get her interested and to stay on task. There will be time later for her to have sessions with non-shiny objects…but for now, what is the harm knowing that she sees and can process shiny things better on a page than just an obscure object in the middle of the page in black and white or color? She hates puzzles and will only allow me to show her things in a book when its very dark in the room, but what would happen if those things were actually shiny? I ask that rhetorically because the answer is “OH MY GOD! Look at that girl enjoying a book!” Another thing that can be unnerving for a therapist is Simmi moving around constantly. Wandering, walking the perimeter of the room, or hiding. She wanders constantly and will take us into a room and then leave us there and leave. Why? She’ll walk back and forth out of any room she is allowed in find something she likes and move it from room to room. There is no rhyme or reason to what she is doing in our minds, but still she needs to move. Constantly. In therapy its the same thing unless you give her something that really holds her attention. Bubbles, balls, the letter “T”, dogs, cats, horses, shiny objects, tools or a construction crane. She also loves music, but will only allow us to sing when she can handle it. Music in a Disney movie she can deal with and even tries to sing along, but she doesn’t always want us to sing or sing along with whatever music is playing.

Physical therapy is also needed. It was brushed aside consistently by her intervention team, even though the vision specialist as well as the team that evaluated her highly recommended physical therapy. She does NOT walk right. And sometimes its difficult for her to walk period. She can reach a point sometimes where she just lays down and I need to pick her up and bring her into bed. She has done this in the stores I’ve taken her to as well. Imagine, everything is going great, she’s wandering the store with us and then finally she sits and won’t get up. It only takes about 25 minutes and she is utterly exhausted and can’t move another step. She would have benefited from physical therapy last year.

And finally Speech therapy is needed. I need to find a speech therapist that is trained in helping children with Apraxia. How does a speech therapist help an Apraxic child with auditory and visual processing problems? The chatter of a therapist talking drives her right up a wall. One of the team members that evaluated Simmi this year suggested to us that we do not follow the normal protocol for speech therapy. His suggestion was that speech therapy take place during physical therapy. Simone needs to be moving constantly and because of this, the more she moves, the more she is in her body and attentive. Are there any physical therapists out there that are also speech therapists trained to help children with Apraxia of Speech, as well as Global and Limb Apraxia? A “One size fits all therapy” will not be helpful for her. Simone hears, sees and speaks much better when she is moving, jumping and running around.

If any therapists in the Los Lunas, NM area feel that they can help, please leave a comment below and I’ll get into contact so we can talk.

The video below is of Simmi and her Occupational Therapist last year playing with the Lite Bright. She knew what Simmi needed and how to keep her on task.

Tags: auditory processing, Childhood Apraxia of Speech, Early Intervention, Global Apraxia, Limb Apraxia, occupational therapy, physical therapy, sensory integration disorder, sensory processing disorder, speech therapy, The Out of Sync Child, visual processing

Simmi is just the sweetest little cutie pie and she always keeps us smiling and cracking up laughing. She is this delicate little flower, uniquely scented with a thrill for life, curiosity, tenacity and pith. Do you remember when you were a child eating cinnamon toast? I do, and that is what Simone reminds me of…cinnamon toast. Now, some people may not like cinnamon toast, but let me tell you what I found so delicious about it as a child….

Cinnamon toast is made by first toasting your favorite bread, adding a fairly large amount of really yummy butter and finally sprinkling on sugar and cinnamon. Next cut it in half or quarters if you’d like put it in your mouth and enjoy! As a child, I can recall the pure satisfaction of eating something so crunchy, buttery, sweet and spicy. This is Simone…cinnamon toast at its finest.

As I watched her playing with Noah, I cocked my head to the side and thought to myself, “If she were an object…what would she be? How would I describe her?” And as I sat wondering, that’s when it hit me that she is cinnamon toast!

So why is she cinnamon toast to me? Well, lets start with the bread…

Bread before its toasted is soft and warm. When I was young, for some peculiar reason, I liked to hold a fresh slice of bread up to my cheek. Next, I loved to smell it. It’s a simple pleasure I had as a child. Well, Simmi is like a slice of fresh bread and I love it when she presses her cheek up against mine. While she is close I can smell her sweetness and love, and I close my eyes and take it all in. Those moments don’t last but a few seconds…just like devouring cinnamon toast!

The bread when toasted becomes crunchy with a texture that complements the butter, sugar and cinnamon. That crunchiness I liken to her ability to change her mood in a split second and all the sudden she is saying “No” just for the hell of it. Or when we are playing with her, it is her way or the highway! Like I said…crunchy! It’s amazing how bread can go from being soft and warm, to crunchy with a unique flavor. It’s the same bread isn’t it? LOL

Next thing I liken Simmi to is the butter…

There is a saying in the cooking world, “You can never have enough butter!” This is true of Simone as well. We can never have enough of her. Butter is slick and slippery, melts when the heat is turned up, and can alter your own appearance if you eat too much of it! Simmi is all of those things. If she is doing something naughty or that I don’t approve of, I will deepen my voice a little to alert her to the fact that “I said NO”, and what does she do? She tries to change the subject by jabbering on about the “dah” (dog) that we don’t even have. So I will bring the conversation back and say “Mama said NO” but she will interrupt again, jabbering on even stronger. She’s trying to change the subject so that I will not speak to her in a tone that will make her uncomfortable. She’s slick and slippery…like butter. Have you ever gotten butter on your hands? It doesn’t come off easily though does it? It takes a fair amount of soap to remove that slippery feeling from your hands or face…the same is true of Simone. Sometimes Simmi is so good at being slick, I’m left shaking my head thinking, “what the heck just happened?” How the heck did she just get away with that? I can tell you how…Poppie and Noah! My husband and my son are both wayyyyyyyyy bigger than Simmi, and yet they follow her around and do exactly what she wants! She loves them dearly, but the both of them have a very hard time saying no to her! Just like butter! Who can resist yummy butter? Butter melts when the heat is turned up, and when I tell Simmi I want her to do something and she doesn’t want to, she melts. She literally falls on the floor and will lay there. When the heat is turned really high on butter, it will start to bubble and finally scald and burn…same with Simmi. As she becomes angry at my requests, she will start to say “no seep” (no sleep) or “no eat” over and over and over again. Its like she is bubbling up and about to burn. Scalded butter doesn’t taste so good when it turns a yucky brown color, and when Simmi begins to scald with her high pitch screaming, all you can do is cringe and try to remove her from the situation.

When cool butter is applied to toasted bread, it melts but doesn’t scald. You can see the butter melt into the bread, and you know the sugar and cinnamon will absorb right in, making the cinnamon toast oh so good.

Next is the sugar….

Simmi is like pure unadulterated sugar. There isn’t a real mean bone in her body. Of course she has her moments where she can be snippy and will object to anything you may have to say, but she isn’t intentionally mean. She doesn’t hit out of anger, although she has swiped at me, Dom or Noah once or twice. Right now she is going through a phase where out of the blue she will just say “no hit!” yet no one is hitting her. We don’t spank or hit her ever. BUT, none the less, there she is saying “NO HIT!” I figured it out the other day why she keeps saying it. The other day I got into her crib to change her and she was standing up with her feet firmly planted between the slats of the crib. I told her “Mama needs to change you, come.” She says no, and stands her ground. I get up and begin to pry her off the crib, and I lay her down. At that point, she is saying no, no, no! So I tell her I have to change her. Then she says “NO HIT!” I look at her odd and wonder as usual why this child is saying “no hit” when no one hits her…then it dawned on me that she wasn’t telling me not to hit her, but she was saying out loud what she was thinking…”no hit mama”. I believe that she has an impulse to hit us, but she will correct herself and say “no hit!”

I love her smile, her laugh is infectious, and her personality is addicting. She is pure entertainment. Sweetness itself.

And finally Simmi is the cinnamon…

Cinnamon has a unique flavor that can turn the ordinary into extraordinary! What would toast with butter and sugar be like without the cinnamon? BORING! Cinnamon has this mellow flavor that infiltrates every nook and cranny of a piece of toast. A little cinnamon goes a long way! Our lives would be a little boring I think if Simone wasn’t here. She adds that hint of spice to our lives, that leave us satisfied and very content.

Like I said…cinnamon toast! Yum!

Tags: cinnamon toast, toddler personality, unique child

We moved into our new home about two weeks ago and I was surprised at how well Simmi adapted to her new surroundings. The previous owners had two huge Irish Wolf Hounds and their hair was EVERYWHERE. We were told by them that they never let the dogs into the house since they were so big and because the owner herself was allergic, but as we came to find out…they lied. Yes, the dogs were allowed in the house and after they moved out and we took possession of the home, did we actually see the massive amount of dog hair everywhere. Not just that, but they didn’t bother to clean up the copious amounts of dog crap left in our back courtyard where Simmi will be playing.

Simmi loves laying on the old carpet in our house, and every time she lays down, out comes a rash. It doesn’t stop her though! I have to give her Benadryl daily until all the carpeting is removed.

Two days ago Simmi had a very bad day. It started at about 10:30am and just got progressively worse after that. I sat her down to eat some food in her little seat, and I went to get myself some cheese and crackers. I rarely eat food she is allergic to while she is present, but I thought to myself “she’s in her little seat, so I’ll just sit here and eat too.” WRONG! I am a huge stickler when it comes to our family walking around with snacks and foods that may drop crumbs, or things that may be on their hands. I’m always careful to make sure my son washes his hands and face after eating if he will be in physical contact with Simmi. I AM THE BIGGEST CULPRIT, and two days ago as I mindlessly ate my cheese and crackers in her presence, with Colby Jack cheese ever present on my fingers, she told me she was all done eating and I got up to check if her hands and face were a mess. DUH! Yes, MINDLESS! I got up from where I was sitting, bent down to her and with my fingers, felt her hands and face. After I touched her face, I realized that I had not washed my own hands and face. My heart started to race as I realized what I had just done, and within seconds, I saw bright red marks forming on her face. It actually looked like she got slapped across the face, with the whole palm and fingers. The rash got darker and traveled down her neck. From her hands, the welts traveled up her arms. I gave her a large dose of Benadryl, and waited a little while and put her in for a nap.

But her bad day doesn’t end there! After putting her in for a nap, she didn’t go to sleep so I took her out, changed her and asked my son Noah to take her outside to play. He went into her room to put some shorts on her, and in another room where I was painting the walls, he starts yelling to me…then I hear Simmi start to scream. The screaming got more intense and as I ran down the hall to her room, I look in, and there is Noah and Simmi huddled on the floor in the room. What happened? The ceiling fan in her room fell, and the blade of fan hit her in the back of the head. I took her out of the room, sat her down on my lap and she just laid there crying. I began to feel her head and to make sure she wasn’t bleeding, and when I got to this large lump on the back of her head, she covered the back of her head with her hand. She didn’t want me to touch it. I sat with her for an hour, making sure she didn’t have a concussion, and while I was attending to her, Vicki and Noah cleaned up all the shattered glass that flew everywhere. They did a great job. As I sat there during that hour, all I could think about were all the times that I would lay Simmi down directly underneath the ceiling fan to change her, and more specifically that just one day prior to that event, I had given her a bath and laid a sheet down in her room, and briefly left her to get her A&D ointment. Can you imagine if that ceiling fan had fallen while she laid there naked on the sheet? I was horrified just thinking about that, and at the same time, extremely thankful that it didn’t fall where she was laying.

When the hour was up, I wanted to make sure she was walking ok since she can’t tell me if she is dizzy or not feeling well. She got off my lap and started walking around very weird. She has times where her legs don’t work right, but she was definitely walking more strange than usual. She ate about two boxes of raisins, and started to ask to go to sleep. I wanted to at least keep her up for another hour, making sure she didn’t throw up or pass out, but her whining to “go seep” was getting more incessant, so I gave in and put her to bed. She fell asleep immediately and slept through the night. The next morning I went in to make sure she was ok, and the child was in the best mood ever. She was happy and smiling and walking ok.

Her allergy to dairy is now a constant reminder to me of all the things that I can’t do with her. Even if she can’t eat food at McDonalds or Chucky Cheese, it would have been nice to be able to take her to those places to play. Kids eating cheese burgers, drinking milkshakes, fries cooked in soy oil…all of those things leave a residue on play equipment, and if she come into contact with these things, she can have a severe reaction. We now have a courtyard with a swing set she can play on, so I guess I’m gonna have to find her some girlfriends to play with at our house. And what about school? I haven’t found a solution for that problem, but she still has a few years before kindergarten starts.

Tags: Benadryl, ceiling fan falling, dairy allergy, dog allergy, Food Allergies, toddler concussion

How time flies my sweet Simone! You were born on June 10th, three years ago, and from the moment I held you, I knew that you were such a treasure. Oh how you have grown from that tiny 6 lbs 11oz sweet pea with strawberry blond hair and deep beautiful eyes! While your red hair may have turned brown, your fire cracker spirit remains strong and vibrant!

You had it very hard in your first 18 months dealing with extreme pain my girl, but I believe that it has given you a great amount of empathy now for others. I love how you can sense when something is hurting another or is making them sad, and you come along side and put your arm around them to comfort them. I know you understand emotions and feelings, even though you can not express them properly, because it shows in your eyes. Yes my girl, you have a way about you that speaks to us without needing to say a word.

I love how you try so hard to communicate with us and tell us what you want and need. Even though you still can not tell us what you want to eat, you can say “eat” or “peez eat.” Even though you can not name most objects you are pointing to, I love that you want to share with us what you see. I love that you have named all cats “mao” because you can’t say the word “cat” or “kitty”, and I’m equally impressed at your ability to try and form sentences. You say things like “wu e highie?” which means “where’s he hiding?” Or when you say “wu aah ooo?” which means “where are you?” when you are looking for that mao! I love how much you are fascinated by nature and everything that has life and moves, creeps or crawls. Whether its the wind blowing through the trees, the sound of dogs howling and barking, little ants, bugs and lizards crawling along the pavement, horses and ponies, it always brings tears to my eyes to see how you gravitate towards them and also how much they all seem to love you. I remember a few weeks ago, when we were all in the car traveling to see our new home, you kept saying over and over again “ah ma see highess, ah ma see highess, wu a highess?” We had no idea what you kept repeating like a mantra for well over a half hour on highway 25, but as soon as you saw the HORSES, you pointed so excitedly and exclaimed “daaa de highess! see? daaa highess! da highess!” and Noah and Poppie and I all busted out laughing and crying to hear you say “I want to see the horses, I want to see the horses, where are the horses?” and then after spotting them in the field exclaim “there are the horses! See? The horses! The horses!” We were so proud of you for making such a complete effort and with tenacity you kept repeating it until we could understand what you were trying to say. I have a smile on my face and tears in my eyes as I recall that day’s events.

I know that right now we can’t have a conversation with you, but I know in my heart that someday you will be able to form the words needed to answer us back. If I ask you “what did you do outside with Poppie?” you will respond with “ouusi” which means “outside.” So I ask you again, and you can only say “ouusi”. If I ask you “did you go in the pool with Poppie?” you will nod your head yes and get up thinking that you are going back outside. Someday I hope to ask you about what you like, or dislike, where you want to go, or what you want to do and that you will be able to tell me.

I love how mischievous you can be my girl. When you want to do something naughty like pulling your chair over to the dresser so you can climb up there and sit on top. There are somethings that are scary to Poppie and I, like when you can dismantle electrical sockets after getting the child proof socket protector off the face plate, unscrew and pull door knobs off of doors if you have the right tool, pulling apart every part of a flash light, and pretty much anything given to you that is of a mechanical nature. Its scary because you also know how to pull a child gate off its hinge, as well as unlocking the front door and running down the street! Oh yes my girl, you have done that more than a few times. You know how to climb out of your crib now and often will perch yourself on the edge of the crib. For you its fun, for us its fear! Of course, it was a blast when I came into your room and you had covered yourself from head to toe in A&D ointment…yes, even your hair! It took eight hair washings with Dawn dish detergent to get it all out, and I remember having to take you out THAT DAY to go and look at houses. How embarrassingly cute you looked with your hair matted down with a thick layer of ointment.

I love when you hold Poppie’s hand and you MUST show me over and over again and you tell me “mama, loo…hannn!” “mama, loo…hannn!” You are so proud to hold your Poppie’s hand, and you hold his hand so tenderly. When you tell me to “loo” you put your cheek to his hand and smile so sweetly. I love how much you love your Poppie.

I love everything about you Simmi. Poppie sums it all up when he says “Simmi is pure deliciousness!”

Happy Birthday my beautiful grand baby! We love you so much.

Tags: happy birthday Simone, toddler birthday

Nothing can strike fear into the heart of parents like needing to return a potentially life saving over the counter medication like Benadryl. When I first heard the news that volunteer recalls were being suggested, I immediately went into panic mode.

Benadryl has become sort of a life line for us, and in many ways a security blanket. I trust the brand I use, and maybe its a little neurotic of me to think that a generic substitute wouldn’t be as affective. I know there isn’t any truth to that mind set, but when you get used to knowing how a product will affect your food allergic child, you’ll do what you can to keep that consistent.

There is a website you can go to find out if your particular brand of Benadryl is being recalled. Here is the website:

http://www.mcneilproductrecall.com/page.jhtml?id=/include/mpr_ndc_finder.inc

Tags: allergy medication, Benadryl recall, Food Allergies

Simmi truly is the sweetest thing in the world. As I sat with her today, we watched Alice in Wonderland and I couldn’t help but tear up as she started acting out a part of the movie. Alice was in the garden and the flowers were singing to her. Simone bursts out in song, waving and dancing…to me it was magical and so special. She loves that part of the movie more than anything else, and it is as if she is imagining herself right into the cartoon. I know that she is aware that her words are not correct, and I have learned not to make eye contact with her while she is singing so that she may freely express herself without feeling embarrassed.

Simmi has a deep and beautiful understanding of human emotion, and embarrassment does not escape her. As she grows and changes, verbally expressing herself is becoming increasingly difficult. She can say “eat”, but she can’t (yet) tell me what she would like to eat. Her vision is improving, and we are now able to put all her videos in the cabinet so that she can choose which video she would like to watch. She understands by viewing the picture on the cover of a video what movie it is, and while it may take her about a minute or longer for the picture to process in her brain, the light finally goes on and she either wants the video on or she will look at the next video cover. This will continue until she finds what she wants. It takes a bit of patience but I love her whole process and the fact that she is using her vision. She doesn’t like to look at books still unless they are glittery or have simple bright colors, but we still take out her box of books anyway. I have also started bringing my own books to read into her room, so when she is watching one of her movies, she will see me reading and hopefully become more interested in picking up her books as well.

We do have a few behavior issues with her, but I do what is called a “reset” with her. There are things that I can do to help her be more at ease when she is cranky due to her skin or stomach problems and sensory issues. One of the things I have done is to put the TV back in her room so that she can watch Mary Poppins while she is drinking her bottle in the crib. Mary Poppins is a favorite of hers, and it is her most requested item from the crib. I don’t even have to ask her if she wants to watch Mary Poppins, because if I put anything else in, or show her the video cover of a different movie she will immediately say “NO!” The second thing that is a “reset” is to put the gate up in her room and keep the lights off. I don’t need the gate up, because she doesn’t want to leave her room, but I put it up anyway so that she will feel in control of her environment. If the gate doesn’t go up, she will push me out the door saying “Go! Go! Bye!” and smile as she tries to expel me from her dark haven. Why does she want me out of the room so bad you may ask? Well, she likes to do things in her room she isn’t typically allowed to do when I’m present. It is really the cutest thing ever, because I’ll peek in after about five minutes and I’ll catch her standing on top of her black leather chair trying to step onto her rocking chair. Is she allowed to stand on her chairs? Uh…no. But that doesn’t stop her from exploring her limits when I’m not in the room. What else does little Simmi enjoy doing when I’m not in the room? She likes to take ALL the wipes out of the box and use each one to clean her floor, the crib, the TV and anything else she feels is dirty…including herself. I usually will give her two wipes, but she wants all the wipes. We know that she understands she is doing something “naughty” because when one of us peeks into her room, she will become startled by the door opening and while she is caught red handed, she will quickly try to put away the thing she shouldn’t have or sit down on the chair she’s been climbing on.

I’ve noticed that when we take her somewhere for an extended period of time, the next day she is worn out in the morning, her face is swollen and she is not feeling well. This morning was no different. Yesterday I took her for a walk and we were out for quite a while in the sun. When I woke up this morning I could hear her moaning in her crib and not moving around. I went in to see what was going on, and she was just laying there limp on her side, moaning and petting her favorite stuffed dog as she held it tight. She cried when I moved her to change her diaper and she wouldn’t get up afterwords. We’ve taken her out a total of four times in the last month and each time she has had this type of reaction the morning that follows. I’m not sure if the sun is a problem for her still, even though she seems to tolerate it well now when we go out, or if it has to do with the pollen count from the pine. Simone also has low muscle tone, and being very active wanting to walk around and discover things could be making her achy the next day as well. We are unsure at the moment exactly what the cause of this is, but we are hoping that it isn’t leading to a new rounds of seizures. She hasn’t had any seizures at night for about a month. We are usually awakened to a very loud thumping sound that lasts between one and five minutes and will usually happen two more times after that. When this happens, she actually becomes energized and will start laughing and giggling and jabbering up a storm. Sometimes she is up all night after one of these events and she doesn’t fall back to sleep until morning. We don’t get to sleep either, since we are up counting the amount of minutes her seizures last and how many she has after that. There seems to be a cycle to when they come, but we haven’t quite figured out the exact cycle. In the days leading up to her seizures, we do notice that she will become less active, more tired and cranky, clingy and she doesn’t want to walk or jump as much. After the seizures happen, her language always improves and new words come out clearly. The vocabulary she has right now I believe is due to seizures she has had in the past. With each event, new words come out…some stay and others slip away after a week or two. We try to get her to repeat those words as often as possible and to build on the core words she has now, but I can see how frustrated she gets when she gets stuck trying to say a word that just the day before she could say and now she can’t. During times when she knows a word but says it wrong, she has resorted to closing her mouth completely and makes sounds with her lips shut tight. I’m unsure whether she is doing this on purpose, or if its a part of having Apaxia, but my heart breaks each time she tries, because I can see the frustration in her eyes.

Tags: Apraxia of Speech, behavior problems, childhood development, seizures, sensory integration disorder, toddlers

Today Simone’s speech therapist came and finally gave a diagnosis of Apraxia of Speech. In September 08′ a neuro-developmental pediatrician had given Simmi a partial diagnosis of “speech disorder of unknown origins.” It can take a long time for a child to be diagnosed with a speech disorder, and after almost a year of working with Simone, her therapist finally was able to confidently give her the diagnosis.

Simone will be finished with her early intervention program very soon, and her speech therapist suggested kicking up her therapy to something much more intensive. With proper therapy, I feel extremely hopeful that she will someday be able to not only speak, but to do it very well!

Below is the definition of Childhood Apraxia of Speech from the CASANA website, and following that are two videos for anyone who would like more information on Apraxia of Speech:

Developmental Verbal Dyspraxia or Developmental Apraxia of Speech?

These two terms are generally synonymous. Developmental verbal dyspraxia is often shortened to “DVD” and developmental apraxia of speech to “DAS“. The “a” in “apraxia” stands for absence and “dys” in dyspraxia stands for partial. Thus, apraxia is absence of speech and dyspraxia is used by some to indicate some speech ability. “Praxis” indicates difficulty executing skilled movements.  However, more recently Childhood Apraxia of Speech is the preferred term for describing apraxia of speech in children.

Oral Apraxia and/or Verbal Apraxia?

Oral apraxia indicates that the child has difficulty with volitional control of nonspeech movement. For instance, perhaps the child will have difficulty sticking out and wagging their tongue when requested to do so. Or the child may have difficulty sequencing movements for the command, “Show me how you kiss, now smile, now blow”. Verbal apraxia indicates that the child has difficulty with volitional movement for the production of speech. This can be at the level of sounds, syllables, words, or even phrases (connected speech). The motor struggle is most typically seen with sounds sequencing.

Often oral apraxia accompanies verbal apraxia, but that is not always the case. Speech and language pathologists have mentioned that it is very rare and fairly unheard of for a child to have oral apraxia without verbal apraxia/dyspraxia.

Volitional — What does it Mean?

In the course of discussing apraxia, as we have above, you will note the use of the word “volitional”. The meaning of this word in relationship to apraxia/dyspraxia of speech means that the child is experiencing the difficulty in nonspeech and speech movement when they are very consciously aware of trying to make movements or they are attempting movements when requested by others. Those same movements, sounds, etc. may be heard while the child is busy playing or he/she just seems to blurt out when no one is really paying attention or trying too hard. As an example, the child may be playing happily and parents may hear sounds being made - almost without thought - “ma, ma, ba, ma,da”. However, when the parents attempt to get the child to use those sounds - “Say Mama!”- the child is unable to do so. In many cases one can see the struggle on the child’s face. They may grope with their lips or silently posture their lips as if searching for the position they need. One minute they could do it (when not thinking about it or attempting the task) and the next minute it is an intense struggle (they are now aware of the request and are trying to will their mouths to make those movements - volitional control).

“Pure” Apraxia of Speech:

What is meant by “pure” apraxia of speech is that no other speech, language, cognitive, or sensory issues coexist with the deficit of impaired sequencing for volitional speech (apraxia). The professional literature tells us that “pure” apraxia of speech in children is rare, that most often apraxia is associated with other speech, language, cognitive, and/or sensory issues. Paula Square states that,

“In its purest form, acquired apraxia of speech does not coexist with language impairments, auditory processing deficits, or cognitive deficits. Nonetheless, ‘pure’ apraxia of speech rarely occurs. Coexisting deficits for expressive language, psychoacoustic processing, and motor execution are likely to occur in both acquired apraxia of speech and DAS (developmental apraxia of speech) because of the proximity of the neural structures underlying each of these processes to those that generate programs for praxis. A review of the literature suggests that co-occurence of language impairment with both acquired apraxia of speech and DAS is frequent…”

Associated issues might not be apparent in a young child. This is especially true in children who are young preschoolers. For instance, these children may not have any apparent problem with receptive language according to traditional and typical assessment. However, the child may begin to experience difficulty when entering kindergarten, when the language processing demands of the setting are heightened. It would not be unusual to then identify higher level language processing problems. Parents and professionals will do well to be vigilant about the child’s total development to insure that, should an associated area of difficulty arise, help for the child will be readily available.

Tags: Apraxia of Speech, CASANA, Early Intervention

Simmi has been through so much since November 09′. It started with her being allergic to our dog Sugar, making her itch and scratch, and feel totally uncomfortable. Then after the peanut M&M incident, her skin just seemed to get worse from there. Purple spots plague her torso, and her skin feels like sandpaper. Back when she was a baby, we had a regular routine of needing to lube her up throughout the day to keep her skin from drying out with Vaseline and using Triamcinalone to control the eczema. At this point I feel like I’m back at square one, except this time the rash is less severe.

Bath time always gave us some problems when it came to washing her, but since her skin has been acting up, I think the soap just stings her delicate skin, which makes her scream and get very angry. I’d be angry too if someone was rubbing soap into my rashy skin. She loves being in the bath and playing in the water, so we try to wash her before she starts playing, just to get it over with.

It seems that she is becoming hyper sensitive to foods she wasn’t allergic to in the past which is further complicating her skin condition. The most soothing part of the day for her is when I wrap her naked in a big fluffy towel, rocking and holding her tight, and then laying her down to put Vaseline and medicine on her body.  I can see her whole body just relax and she lets out a sigh of relief as her eyes close slightly. In her relaxed state, she will perk up and want to partake in the daily lathering ritual. I give her the big container of Vaseline, and she will stick her whole hand in there right down to the bottom. She cups her hand and brings out the biggest clump of Vaseline! Simmi will hand me the container and begin rubbing the big globby mess into her hands and then rubbing it into her skin. She pays particular attention to her face, making sure to cover every square inch of it. Lets not forget about her hair too! Oh the hair…she must put it all over her hair and finally, the biggest treat of all-snacking on it. Hmm? She likes the taste of Vaseline so much she wants to eat it. I’ll let her take a taste, but beyond that I usually will remove the excess from her hands so she doesn’t enjoy the Vaseline too much. Once I made the mistake of leaving the Vaseline on her dresser within reaching distance, and when I went in to check on her, there she was on the floor enjoying rubbing it in to her face and eating it up. We keep it in a locked drawer now.

Tags: eczema, Food Allergies

Its amazing how quickly time goes by. Simone will be three years old in four months. The picture on the left is of Simmi and Poppie walking down a the road on a piece of property we went to see this past Saturday. We were walking around on that land for almost two hours, and it was great to see her be so excited and also handle the bright sun so well. I was concerned that the bright sun would start to make her scream, but she handled it beautifully. She has been learning to adjust to bright lights and full sun, and when she is overwhelmed by the light or by noise she will go find a dark quiet place to settle herself down. She has been putting into practice her own coping skills which has been her biggest breakthrough so far.

Simmi is an absolute delight. She’s is exceptionally intelligent as well. As she learns to maneuver around her own speech problems, she is finding other ways to communicate. Not through sign language, but through “showing” us what she wants. She can ramble on and on about something, but when we say “show me” she will show us what she wants or even how she is feeling. Just like any other toddler on the planet, she has learned the art of emotional manipulation. Almost all toddlers do it, but how you handle emotional manipulation will surely make your life a living hell if you don’t maintain control during those times. So what does emotional manipulation mean to me? There are several examples I can give but depending on the child’s understanding, sometimes they can be more complex situations. For now I’ll give a few basic scenarios:

I am the one that is with Simmi throughout the day. Everyone else in the family is either working or at school. When the emotional manipulation started, it was simply screaming at the top of her lungs (not all the time) when I said she couldn’t have something. After a few times of that happening, she employed another tactic…”pouting.” Oh the pouty lip! How I love it. If I say “no you can’t have that” or “not right now” or “no you can’t take the bubbles into your crib,” she’ll collapse on the floor, put her hands together, playing with her fingers, stick out that pouty lip and these big tears come rolling down her face. It is quite the site. She will sit very sorrowful for a few minutes, and when she realizes that the pouty thing isn’t going to work, she gets up like it never happened and accepts that she will not get what she wants. You may be thinking to yourself, “yeah, so what, all toddlers do that!” I’d say very true since my children all did that as well, but as for me it allows me to see how her mind works. It allows me to see that she can reason to a certain extent and also understand that “no means no.” Which leads me to example number two…

The end of the workday draws near and Poppie comes home. She is so happy to see Poppie that she runs into his arms. He is such a softy with her and he can’t resist her charms. He has gotten into the habit of always picking her up and carrying her around in the house. Is this bad news in the making? Well it is for him and for her. I don’t pick her up and carry her around the house all day. We do activities, play and things like that. When Poppie is home, she is like this very powerful little being controlling the largest person in the house. He picks her up and she’ll point to a direction…he takes her there. She points to another direction, he takes her there. If he tries to put her down, the extreme screaming starts, so he quickly picks her up again. This is emotional manipulation to an extreme. The screaming doesn’t stop unless she gets what she wants from him. If I step in and whisper to him not to pick her up, she will scream and scream, and if I try to correct it, she goes into the pouty mode. She will not look at me, smile, and no one can talk to her in those moments. By “moments” that could be a half hour or more. Then without a second thought, he’ll pick her up again. Its like second nature to him. When these types of things occur it just teaches her that if she holds out a little longer, she’ll get what she wants anyway. This can hinder any pleasurable experience he might have with her in a major way. She is in complete control of him, so if he wants to do an activity with her, or employ some therapy techniques, she stops that dead in its tracks. We have therapists here throughout the week, but it is up to us to take the lead with her therapy. A therapist is only here for a short time showing things we can do for her to help her, but if he can’t be proactive in her therapy because she is controlling the situation, he loses out on a beautiful experience. Often he feels trapped in the situation, so we are working on ways for him to be a little more firm with her. Its almost painful for him, because he looks at those gorgeous green eyes of hers and he melts. To make matters worse, she just started to say “Poppie” this past week. Its awesome that she can say his name but for him it is torture! LOL He will hear “Poppie? Poppie come, Poppie come, Poppie come!” and he will want to go in there and just sweep her out of her crib into his arms. It is the sweetest thing to hear her call his name. But we have a schedule we keep with her…especially in the morning, and if he breaks the protocol, the day goes sour very quickly. This past Saturday was a good example of that. He and I were having coffee, and she knew he was home. She knows each of our footsteps. We always go into her room and get her bottle ready, change her diaper, and she drinks in the crib and lets it digest for a while. After about an hour and a half we take her out of the crib and she can have breakfast…this is the start of each day. Including the weekends. Consistency is very important. It was hard for him to just sit and listen to her say “Poppie come, Poppie? Poppie, POPPPPPPPPIIIIIIIIEEEEEEE!!!!!!!!!!!!!!!!!!!!!!” But it was good for him to see that it would stop. He and I sat there giggling with delight as we listened to her call his name. When that didn’t work she said something she’s never said before…”MOMMY”. Now, I’m grandma, I have never been mommy. We never taught her to say mommy or to have her call mommy, but she was saying it very clearly. By this point it was time to take her out of the crib, and when Dom went in to get her, she looked at him and said “Oh Poppie” and put her head on his shoulder, and when I came into the room she pointed at me and said “Mommie” then pointed at Dom and said “Poppie.” She made the connections and said things purposefully. She’s been saying his name ever since.

Another more scary thing that has been happening is that she is having reactions to food that she has never been allergic to before. On Monday, we gave her tilapia with a sauce that Dom had made. Within a minute, her lips swelled, her face puffed out and started turning red. Then she wouldn’t close her mouth. I rushed and got some benadryl into her and she was ok after that. We don’t know if she is developing an allergy to fish now, or if it was one of the two spices in the sauce. Two of the ingredients were mustard and cummin. Then she had a bad reaction to some homemade potato chips we made. She loves potato chips, so we made some using corn oil. We are unsure whether she is developing an allergy to potato or corn or both. We gave her some regular potato chips and she had an even worse reaction than to the ones we made. The potato chips we bought were made with corn oil. Until we take her for more testing it is hard to know what she is allergic to. Her reaction to the potato chips yesterday was really bad also, resulting her in lips blowing up, and not being able to close her mouth. The rash on her face was bright red as well. Simmi can’t seem to catch a break with all this food allergy stuff. It usually takes a few days for whatever is in her body to finally reach “the other end” and then she ends up with a really bad diaper rash. She has had a total of three severe reactions since December, and when that happens she also gets purple spots. Right now her chest is covered in purple spots. They can take anywhere from a month to three months for them to clear up.

Sorry this entry was so long…its been a while since I’ve updated her blog.

Thanks for reading!

Tags: emotional manipulation, photophobia, severe food allergy, speech disorder, three year old toddler