So I made it through this post and have had good responses from it. Thank you for those of you that have spoke up about the post and how it helped you understand our little guy better or that you would pray for our Harrison. It is heartbreaking to for other to see your child as anything other than "perfect" when he is the apple of your eye, your whole world. I know in the big picture Harrison's issues are not HUGE, we know families that have so much more to overcome but without the aggressive treatment and therapy that Harrison needs he could never function like you and me in the world. With that said I am going to try to explain a bit more of Harrison's world.
Again, Harrison met all his milestone before on or time which is often a big warning call for some of the issues that Harrison has to deal with. With that said it took us longer to clue into all of his needs. After Harrison was in speech for about 7 months we talked about having him evaluationed by an occupational therapist because he was not moving is mouth AT ALL when he was trying to talk, (which goes along with the apraxia), would not stick his tongue out etc. and since he has never been a sleeper we thought that maybe just maybe he might qualify and if nothing else it would give him more time away from teacher Mommy.
I WAS SHOCKED when the OT came to do the evaluation. Every question he asked seemed like she had know Harrison his whole life. She asked things like
* Does he drink a lot (YES, 1/2 gallon of milk in less than two days and water, and juice on top of that and would drink more if we would let him),
* does he like to eat crunchy food (YES, and for several months he would only eat try crunchy food),
* Would he let you hold and rock him to sleep as an infant (NO NO NO, just recently has he started to like cuddling and would NOT go to sleep anywhere other than his bed by himself to recently also. As a baby would have to hold him away from our body and bounce to clam him, but he would not have anything to do with us holding him tight)
* Does he sleep well ( NO NO NO NO that is a whole other post)
* does he sort, line up, etc his toys food etc (YES, we used to joke that he was OCD, we won't joke anymore :) at 18 months he would sort cars trains anything by size and color. Each type of toy has to have its own)
* Does he like to have his hands dirty (NO) and does he freak out if he gets food on them ( YES)
all of these things are clues that there is a sensory processing issue going on, which I had NO CLUE about.
So by the time she left the first day I felt like the worlds worst mother. How could I have not seen the writing on the wall. And not only were these sensory issues a big deal, he also had decrease trunk strength, a rib cage that had not moved down correctly, he did not ever reach across his mid line. I know by the time she left I had to be white as a ghost. We had her come because he did not move his mouth and that was the least of her worries. So on top of the speech which we thought was the only issue in Harrison's world and at that time we thought it just a delay and no big deal to a whole realm of new trail and obstacles to overcome.
What is a Sensory processing issue?
very basically we all have sensory things that bother us, weather you have to have a fan on to sleep, or that you can't walk bear foot on sand, or you don't eat certain foods because of the texture. But for Harrison one of those things may set him over the edge, he may freak out, he won't be able to calm himself quickly and efficiently. So what's the big deal? It could become a issue that grows to the point that he can not be in large crowds ( that make him really nervous) to not being in loud places (that freak him out big time), to not knowing how to function with peers, all of which are need skills in our everyday lives. He is NOT AUTISTIC but has some of them sensory issues that are often found in autistic children.
What Harrison does
*in a new places he retreats, acts shy, but really he is terrified and can not self calm himself.
*in loud places he screams, will actually climb up my body to try to get away, I have almost dropped him doing this more than once.
* in loud places or that he feels are loud (he is always telling john to turn the radio down etc because it is too loud, when it is not that loud) he will hand on to me for dear life.
*when people come to the house he is so overly excited that he will run circles around the house for hours.
*When he has had too much stimulation he will NOT BE ABLE TO SLEEP
* When he has had too much stimulation he will retreat to his safely areas which have become his trains, and cars, lining them up, sorting them. He will also want to DRINK A LOT and eat crunchy snacks.
*he washes his hands contently (he likes to get dirty outside but not inside the house)
* he does NOT like new places and will become very nervous and scared he knows that he is not able to control the situation and that means he may not be able to control his self.
* these all sound pretty normal but it is the extent that they bother him that is the issues.
How Harrison Calms Himself
* plays with his train
*has a tag blanket and paci not that both stay in the bed but tag still has to come out during the day some.
amazing he says juice perfect and choo choo tracks perfect, those are what are most important to him and him making it through the day so it is very important that he can tell everyone what he needs when he needs them. Now juice means anything to drink, boo boo juice is his soy milk, dada milk is John's regular milk, Mama juice is apple juice etc.
What we do or have done to help him calm
*to Harrison schedule and structure are very very very important. If we get off, he is off for the whole day sometimes for more than one day.
* He does not handle surprises, we tell him repeatedly what to expect next, before bed we tell him everything that is going to happen the next day, in the morning we go over the list for the day and repeat through out the day. If something does not happen that he is expecting it will set him off, which can be a problem, but a surprise can get him off even more. So days that we say we are going do something and it rains, the whole day is off but if we went to that someplace if it were new and he did not know we were going, none of us would be able to enjoy the trip.
*we did a brushing protocol for several months when we used a surgical brush and brushed Harrison's back, arms and legs, and did deep joint compressions every two hours. we no longer do this and this is when his sleeping got much better
*we do a lot of deep pressure play, especially before bed, with heavy objects, wrapping Harrison in weighted blankets, roll weighed balls over him, climb on and through pillows.
* during the day deep pressure pats, and rubbing of limbs and back help calm him along with rhythmic movements and rocking. So if I am holding Harrison rocking, talking softly and rubbing him hard, I am not trying to baby him, I am try to help him calm himself so he can continue to function.
* during play groups etc, he will have to leave and we will sit quietly and do some of these things till he is calm and enough to join the others.
Again we are blessed beyond measure to be able to share in Harrison's life. God is a good God that gave us the most wonderful little Red Head Wonder in the world, but we also thank God for giving us the people and tools to help Harrison become all that He has planned for Harrison
Harrison got to go into his barn today since John got the wall up good and solid last night. He was super excited.
And times like this I am so thankfully for have a big fast camera. I was just out the back door when he jumped up in his barn and I am guessing he was telling me how much he LOVED his new barn. The picture above was the first I got then the next two are below. I LOVE THEM.
So I have not been cooking like normal lately and I think it is high time to get back in the swing of things. I have not been doing so much mainly because in the summer there is always other things that I would rather do :) anyway I thought I would share a couple of recipes and see if it might help me get back in gear. Sausage and Cheese Turnovers ( I have meant to share this one before, JOHN LOVES THESE and I make a big batch cook them then freeze them. To use later all you do is put the frozen turnover in the oven at 350 for about 20 mins until warmed through. These are great for breakfast or lunch, and John has them a lot for lunch with baked french fries or leftover side dishes. I got this recipe from a blog but don't have which blog it was from, so this is not my own recipe)
* Crescent Roll Dough full batch (if you don't have the want or time to make the homemade dough that is below, you can use canned crescent roils, you may need up to 3 can * 1 lb. sausage fully cooked and drained * 8 oz cream cheese, I used the reduced fat * 1 1/2 cup shredded cheddar cheese * 1/4 cup sliced green onions (or what ever onion you have on hand) * 2 teaspoons garlic salt * 1 teaspoon black pepper
1. prepare and let dough rise fully. divide into 7 portions 2. in a large bow, combine cooked sausage, cream cheese, cheddar cheese, onions, and garlic and pepper. stir till combined well. 3. Roll out on portion of dough at a time on a floured surface, roll into a rectangle about 1/4 inch think. then cut into 6 or 8 sections. 4. place about 1 Tablespoon ( I use a small ice cream scoop) into the center or each cut sections. I put a little water around the edge of the dough and fold over and seal the seams of the dough. 5. bake at 375 for 15-18 mins or until lightly browned on top.
Homemade crescent rolls These are not big and fluffy like deli crescents but great with a little honey over as a small dinner bread. I make a double batch when I do the above turnovers and so I can cook a few crescents to freeze, as well as freezing some of the dough for later use.
*1 T active dry yeast * 1/2 c warm water * 1 1/2 c milk * 1/2 c butter, softened and cut into chunks * 1/2 c sugar * 1/2 potato flakes * 2 eggs * 1 1/2 teaspoon salt * 6 to 6 1/2 c flour
1. dissolve the yeast in the warm water in large bowl. Add the milk, butter pieces, sugar, potato flakes, eggs and salt into the bowl. stir just to combine. Add three cups of flour and mix well, stirring until smooth. add as much of the remaining flour as possible till a stiff dough forms. 2. knead a few times, cover and let rise for 15 mins. 3. divide dough into half into a circle about 1/2 inch think. cut each circle into evenly wedges, about 16-18. roll the wedges from the wide end to the point. curve ends slightly and place on cookie sheet. cover and let rise for one hour. bake at 350 for 15-18 mins.
Corn Salad (I first had this at a salad supper but added a few extra things to it to make it my own, we have really enjoyed this salad this summer. I only put the chips in half the salad so we can add fresh chips the next day.)
* 6- 8 ears of fresh corn (could also use canned corn)
* 2 banana peppers sliced thin
* can of black beans drained and rinsed
* red onion sliced (not in the picture)
* about a cup for shredded cheddar cheese
* enough mayo to cover everything ( I use half low fat mayo and half low fat miracle whip)
* about 2 TBS of ranch dressing mix
* 1/2 bag of chili Frito's
I cook the corn and peppers with couple tablespoons of water for about 5 mins then drain and cool down with ice and running water. once corn is cool mix everything together and enjoy
corn cobs ready for the compost pile, and to help feed the garden next year.
John's Parents camped out in Bardstown so we got to spend a little time with them. Friday night we cookout at their campsite. Harrison and Matthew enjoyed their S'mores
What silly boys
My parents came up this weekend also and Harrison enjoyed another sugar treat. Harrison enjoyed Grammy's birthday cake and ice cream. He does really good with an ice cream cone but a spoon is a different story.
John also started another project. He is building Harrison a barn in the back yard. It will be really cool when it is all said and done with a slide out of the loft (which will come a little later) and the boys are going to camp out in the loft which Harrison is really looking forward to. He will also get to store his four wheeler, and wagons in his barn alone with all his animal feed. I am also looking forward to these things to get out of the garage :)
John got all four walls up but it was too dark to take a picture. SO we are looking forward to seeing what all gets done this week. We are planning a Farm birthday party with lots of animals and a tractor to go along with his barn we are just hoping that it will not rain.
Many of you know that Harrison has some speech and sensory processing issues that I have touched on before but have really never went into much detail about what he is going through. Really we did not know the severity of it till the last several months as he grows older the gap grows with each month. And while we still DON'T have a diagnosis (which will not come until he is at least 3) we are operating under the assumption that Harrison has a disorder called Verbal Apraxia, which is a disorder rather than a delay. A delay is when you develop in correct sequence but at a slower rate where a disorder is a defeat of the brain.
Let's start at the beginning, when Harrison was about a year old I started to become concerned about his speech or lack of. I tend to be a bit high string and over protected so I kept my peace and waited till he was 18 months before I really started pushing it. At that point he had about 6 words, but I noticed he could no longer say things that he had in the past, and what really struck me as odd was that his paci and tag blanket that went EVERYWHERE with him he did not even attempt to call them by name. Harrison's pediatrician was not concerned, but I knew something was wrong. after screening he did show to be slightly behind in is expressive speech, so slightly that he almost did not qualify for speech. Now a year and a half later he only has about 12 words that anyone would realize. He is however, very good and getting his point across with his hands and sound effects. At his last evaluation at 2 1/2 he was demonstrating cognitive understanding of language skill of a 5+ year old, while his expressive skills, what he is able to say, was at 1 year 10 months. So what does this mean.... it means while he can "tell" or show you what letter words start with, tell you which words rhyme with what, tell you sounds of each letter but can not put the sounds together, put stories in the correct order, he can not tell you that he would like cheese to eat. This cause GREAT FRUSTRATION to him and not to mention those around him. He is very verbal and tries to talk all the time it just does not come out in a manner that we can all understand it. So now we are looking at Verbal Apraxia as a way of life for years to come.
SO WHAT IS VERBAL APRAXIA *it is unclear what causes apraxia, but is a defeat of the brain * it is NOT a cognitive disorder * it is NOT a muscle disorder * it is a oral motor speech disorder, the problem occurs when the brain tries to tell the muscles what to do, the brain does not tell the mouth, jaws, tongue etc what to do in the right order or not at all. *children with apraxia know what they want to say the words are in their head but often are not able to produce intelligible speech (one illustration I like is... "the problem occurs when the brain tries to tell the muscles what to do but somehow that message gets scrambles. It's like trying to watch cable TV without the right descrambler. There is nothing wrong with the TV station and there is nothing wrong with your TV. it's just that your TV can't read the signal that the station is sending out. The child must figure out how to somehow unscramble the mixed messages in the brain that are being sent to their muscles in their face and mouth")
WHAT DOES THIS MEAN FOR HARRISON LONG TERM? * He will have LOTS of therapy (right now he has 2 hours a week, starting next week we will adding 3 more sessions a week) * He may have therapy up into his teenage years more than likely * He hopefully we will speak "normally" as an adult although he may always have some lasting effects of the speech disorder. Which more than likely will be worse when he is nervous etc. *Apraxia is almost always joined by other disorders or delays which would explain the sensory processing issues he has (which I may touch on later), decreased trunk strength that we are also working on, and maybe even the sensitivity he had as a baby to milk protein etc. * since apraxia is a motor planning issues he may be 4 or 5 before being potty trained * He may continue for years to gain new words to only lose them again. for example he could say bird for almost a year, and now it has been at least a year since we have heard that word from him. He may say something "perfect" today and not say it again for 6 months. And if he does say something "perfect" and is asked to repeat it it almost always will not be able to repeat it under pressure.
WHAT WE ARE DOING * We love our little Red Head Wonder for the the blessing from God that he is and give him every opportunity to flourish that we can and expose him to as much as we can. * He is getting speech and OT weekly along with John and I working daily with him *He could go to the public preschool program but at least for now we have decided not to go that route since he is getting lots of therapy privately. He is however going to Mother's Day Out 4 hours a day 3 days a weeks to help with the social aspects, and I am using preschool home school curriculum with him daily at home working on language skills mainly at this point. He is already recalling words and sounding things out so I really think he will read before he talks. * we are looking into other diets to try with Harrison to see if we see any changes as well.
* We also started his horse back riding lesson earlier than we had planned since there is research that it also helps speech and it is good for his decreased trunk strength WHAT HARRISON DOES AND FEELS * He becomes very nervous and shy around new people, and what is the first thing someone new asks a 3 year old? "What's your name?" which Harrison can not answer. *His friends don't understand why he can not talk like them, and if they comment on it he will go play alone. * He Uses sign language and self made signs and sounds to try to explain what he wants, needs, or feels. So much so that we have stopped using sign language and teaching him new signs since he is starting to sign sentences, which would be fine but if he has the sign he does not attempt to say the word. *He is beginning to act out in his frustration * He becomes VERY FRUSTRATION when he repeats and repeats himself and we have no clue what he is saying. for example he has named his two chickens but we can not figure out what he is saying. He says the same thing every time but as hard as we try we can not realize what he is trying to say. * He tries SO HARD but he just can't get things out. a couple examples-- we call my Dad "Grandpa" but Harrison says "PawPaw" if you ask him if that is PawPaw he will say no but if you ask it if is Grandpa he says yes. He hears the difference, he knows the difference he just can't say it. --- also he can make the sound for each letter but can not but them together or with certain other sounds, for example he can say Mama and Matthew which both start with "M" but when he tries to say MOO what comes out is "Boo" he can not transfer the "M" sound over to a different word with a different vowel following it.
Harrison is a super smart little guy that loves being around people and learning new things he just can't tell us what all he is learning and can't ask questions about the things he want to know more about. I am able to understand roughly what he is talking about I would say 70% of the time but to everyone else in his life it is much less. It is hard as a parent to see your child struggle so much, you want to take the pain away but if we shelter him now it will only be harder for him later. We pray that his disorder will only make him stronger and us as well, and that he will not let it break his sweet sweet spirit. We love our little miracle from God, and are so blessed to be called his parents.
We are happy to say we have a Puggle and he LOVES being a puggle.... Puggles is the youngest class of our AWANA program at church, which is a children's program to teach and memorize Bible Verses. We are at a smaller church than we have been at in the past so Harrison has been in the nursery until the past month. He never cared much for the nursery but he now has are real Sunday School class and a real Class on Wednesday night. He thinks he is so big and is so excited to share what he has learned about God in his new classes. He also LOVES his puggles shirt and as soon as a mentioned puggles tonight he went and got his blue shirt :)
I get to watch him during his games rotation so it is really fun to see him be his own little man.
Last week a my friend, Amber, from Richmond came up to visit for a couple of days and brought her two kiddos to play. Then My Buddy Rebekah just left with her two children for another two day visit. Believe it or not they both came and went and I DID NOT TAKE ONE PICTURE.... what is happening to me? We had great visits and the kids all played wonderful together, and I am blessed to have such good friends, God has surely blessed me. We don't get to see each other nearly enough but it is great to just be able to pick up where you left off.
John took Harrison to play "bolf" today. Harrison was so proud of himself for saying "bolf" so he can't say the G but he sure has the the "F" down Pat. We take what we can get around here, and it is pretty darn cute. Cousin Matthew and Uncle Jeremy went too and the Mommies got to do some shopping and lunch at the Cheese Cake Factory.
I think the boys had fun but I think the Daddies got more than they thought they were getting into. But over all I think Fun was had by all.
And John did really good getting me a few pictures too :)
So we moved Harrison BOOKSHELF into his room tonight. John started working on it over a year and a half ago and other things always seemed to needed our time so it got done right before our trip to Austria and I finally got all the coats of paint on it yesterday so into his room it went. It is bolted to the wall so no worries, Harrison will not be able to pull it over if he tries to climb it. :) The firetruck on the top was one of John's and since Harrison's nursery was done in firetrucks I have been waiting a long time to have it in his room. Thanks John :)
Friday Night we headed out to play putt putt golf. This was a first for Harrison and we have been trying to take him for several weeks it just never seemed to work out so Friday night we headed out for dinner and and game of mini golf. Harrison had a blast. So much so that John decided to take him for a real game today, I will post on it later :)
As you can tell he has great "form" but he gets the ball in the hole, but after three strokes he picks up the ball and places it right on the edge of the hole, I guess, understands that you want a low score :) And the boys had to play a couple of games before we headed home.
Harrison started back to Mother's Day out today. I almost keep him home since we had just a late night last night but I went ahead and sent him, I hope he has a good day. I tried to get a couple pictures before we headed out but he was not too interested in it this morning.
I don't know where time has gone, We have been talking about his birthday party that will be here before we know it, and I don't want my baby to turn three, but he is so much fun and such a joy to us.
Here is his new teacher for the Year Ms. Leigh Ann. He was really excited about going to school today until he got there and realized that he had a different room and a different teacher but once he friends all got there I know will have a blast.
Last night we went to the World Championship Horse Show at the state fair with Grandpa. Grandpa had a couple of horse that he knew showing and we thought Harrison would think it was fun. Above the boys are having some yummy Fair food getting ready for the show.
Harrison was so excited.
And he picked a horse in every class that he thought would win. He only picked black or gray horses though :)
Did sat and really watch for about the first hour then he got a little restless but he ever cried or fussed just wanted to move around some. We were there from 6:00 Pm - 11:30 Pm so he did GREAT.
This horse, "I'm Looking For You" is the reason that we stayed so late. He showed in the very last class. My Dad is a farrier which is the blacksmith that puts shoes on horses. Anyway he shoes this horse and he did well even though he did not win the top prize.
The horse below is another one of Dad's friends horses and he was even born on Dad's Farm.
And we got to see the Trainer from where Harrison has his riding lessons show and Miss. Anna, Harrison's instructor was there too.
I am a Child of God, a wife to a Hard working Husband, and a stay at home Mom of a little red head wonder. I enjoy learning something new everyday and that often leads to a new recipe which my husband does not always enjoy. I also enjoy photographing our lives so there are always lots of pictures in my posts.Let us know you stopped by and leave a comment and come back often we update several times a week hope you enjoy.
Please do not copy or print any photographs from this site without written permission.