We are still alive, and planning to continue with the blog. I basically took a year off because there were some changes in our family. First, we added a new member! We have a new baby boy who is as cute as he can be. During the pregnancy, my husband got promoted (yay!) but it came with a relocation to another state. In the end we were able to stay in Virginia, but while we thought we were moving, we kept busy trying to downsize, looking for new schools, house... and all what a family relocation entails.
As you may recall, I previously talked about our options for Patrick's school. We were torn between private school, public school, and homeschooling. He didn't pass the test at the private school, so that option was out of the question almost immediately. I kept exploring and evaluating the remaining two options, but when we found out we were moving while being pregnant, we decided to just enroll Patrick in public kindergarten, so that I would have time to deal with everything that was going on at home.
Patrick has a great teacher and really enjoys going to school. There is the occasional morning in which he doesn't want to go to school and cries, but he is perfectly fine and content by the time he arrives at school. He has made new friends and the great thing is that two of them are basically our neighbors, so he gets to play with them sometimes outside of school.
We also took a break from his private speech and occupational therapies. He receives speech and OT at school, although only a fraction of the time of what he used to get privately. The bigger plus from the public school, is that Patrick has an special aid. There are other 4 kids with an IEP in his class, who also receive help from the special aid. She is most of the time in the classroom and takes turns helping out the kids like Patrick.
Now, if you read the post about the school choices, you may remember our idea is to have Patrick repeat kindergarten. So he did his first year of Kindergarten in the public system, and now, for his repeat year, we were hoping he would do it in the private Catholic school by our home. Enrollment time is almost here, so I tried to have him do the school test at home, and sadly, I realized he isn't anywhere ready. It's actually quite the wake up call to realize he didn't improve much during this year at public kindergarten, so, we have decided to finally give a chance to homeschool.
My idea is, among other things, to outsource some of his education, include a special ed a few hours a week at home, restart private therapies, enroll him in sports to target his motor delays... basically, the idea is to give him a completely tailored education. He is a special kid who deserves a special education. I'm glad I have a few months before we start, so that I can gather all the resources and make a plan. I will be happy to share it with you once I have it. The special education program in the public system has failed my Patrick (and many other kids) in different ways. I'm glad we gave it a try, but sad to realize it didn't work. We don't want him to only be able to be in school with other regular kids, we want him to actually LEARN. I may talk in detail about our issues with the special ed system in public school later on, but for now, we are excited to finally help Patrick reach his full potential.
Patrick began receiving public services since he was a little over one year old. He received speech, occupational and physical therapy. Once he turned 3, due to his developmental delays he qualified automatically to be enrolled in the public preschool, and since then he has his very own IEP (Individualized Education Program) to learn more about his preschool setting, click here.
Patrick is 5 now, and it's time to consider kindergarten. These are our options:
Public School:
Pros:
Patrick's IEP states that he qualifies for services from the county. If he continues in the public system, everything that he qualifies for, will be given to him, at no additional cost. That means, speech therapy, occupational therapy, accommodations, and probably a one-on-one aide for a few hours a month to ensure he isn't lagging behind.
There are good chances that Patrick won't be the only one with developmental delays in his class, so he won't feel like he is the only one behind. Also, teachers should be more familiar as to how to work with these children since they may have more experience.
Our taxes are already paying for public school, so no additional cost. The money saved could be used towards private therapies, and to sign him up for a few activities like sports, music or arts and crafts.
Many people seem to think that this is the best option for him based on his special needs.
Cons:
Too many students. Patrick has been doing well in a setting of 7 children per class. Public system could mean 30 students or more.
It's the public system. I have heard so many bad things about standardized tests, young children not being able to play enough or have recess, teaching them things that often parents not even agree on, and the list goes on.
More prone to bullying. I'm afraid his self-confidence can be compromised, when other kids his age start picking on him because he can't do what others can, because his speech is not clear and so on.
CONCLUSION: Patrick has his big IEP meeting in 3 weeks. All my questions shall be answered. After this meeting I should have a better idea about what the public system believes my son needs, and what they could offer in the public system, private school or if I homeschool.
Private School.
Pros:
Slightly less children than in the public system.
It's Christian based, so he will not only receive your regular school education, but will be also based in the same Christian principles in which we are raising our children.
I have several friends whose children attend this school, and they all say great things about it.
My husband really wants him to go to this school.
Cons:
It's the most expensive option of the three.
It's likely that only a few of the services in his IEP will be provided at this school. The school may not be able to provide him with all the accommodations he may need.
There is an assessment in order to be accepted. Chances are, he will not pass! They gave me a list of all the things he should know (ABCs, counting, colors, shapes, drawing, answer info about him...) and he hardly knows anything!
CONCLUSION: Patrick's assessment is next week. If he doesn't pass, well, they are making the decision for me, leaving me to choose between the other two options. If he passes, however, I would be back to where I'm. This week I'm meeting with a mom who has a child at this school (3 grades up) with Joubert Syndrome, this should give me a better perspective of what this school can offer for my son.
Homeschool
Pros:
It would give him some time to catch up. Patrick seems to improve faster the more he learns to talk. So perhaps, if he has a year off from mainstream school, and we focus on his speech and some extracurricular activities to target his developmental delays, he could be really ready to go mainstream for elementary school.
It would give us freedom to choose a variety of activities he enjoys, like swimming, music, cooking, gardening, construction... and we wouldn't be necessarily overwhelming him. Regular kindergarten hours are from 8am to 2:30pm Monday to Friday. All these activities I could sign him up for, however, wouldn't take nearly as much of his time, so he would still be able to take a break and enjoy his childhood playing!
I would be in charge of what he learns. I would be able to customize his education, the schedule, etc.
Homeschooling is growing fast where we live, with more and more options available. I have many friends who homeschool who can share their tips with me. There are many co-ops, excursion groups, playdates and many other activities for homeschoolers.
Cons:
I'm not sure I could pull it off. I can get disorganized, I may procrastinate, I may have other gazillion things to do and I'm afraid I won't be able to consistently keep up with the homeschooling curriculum and schedule I set when we start.
I hear all the time that Patrick does very well in the school setting. When I'm around, or when I'm the one teaching him, he gets very distracted, doesn't try hard enough. Seeing other kids performing certain tasks at school, make him feel like he has to do them as well. At home however, he won't follow instructions or practice enough.
I also have a 3 year old! Many of the extracurricular activities for homeschoolers require parent participation, and having also a 3 year old with me would limit my options.
CONCLUSION: I need to put together what the schedule would look like for my son. I need to find the homeschooling resources in my area. For instance, I found something called Classical Conversations, and Skye Chase Co-op, both near me, both Christian, and both sound fantastic. These are once-a-week meetings each, so I need to find additional resources. I must come up with ideas on what to do with Robbie while I'm attending these classes with Patrick. Having a schedule set, a price set and all my options set, I will have a better idea if this is the way to go.
***
This is where I'm right now. I will update in a couple months once we have made our decision. One thing I know for sure, is that either option we choose, it may end up being only for one year. Then re-evaluate, and see if he needs to move to a different setting.
I hope the title doesn't sound like I'm making this as some sort of match or race between Robbie and Patrick. What I mean with the "vs", is the difference, as in how one learns versus the other one.
It's very different.
Ever since Patrick was a baby, I could tell that he was very passive compared to other kids. Patrick would happily spend long periods of time sitting on my lap without any desire of going anywhere else. Sometimes I would sit him on my bed, with a few toys around him, while I was getting dressed or cleaning the bedroom, and he wouldn't move from there. I remember when I went to Mexico to visit my family (Patrick was 1 year old) I was feeding him a snack, and he was sitting on a table. I left him there for few seconds to grab a napkin and when my mom saw us she got upset, because she thought Patrick could fall off and get hurt. But I knew Patrick wasn't going anywhere. He just wouldn't make any effort to go anywhere.
We had to teach Patrick how to roll, how to stand up, how to reach for objects, how to crawl, how to walk. Any other parents would say, well, I taught those things to my healthy kid, too, but the thing is, we had to push him, a lot, really a lot, well beyond the milestone mark, until he finally did each of them. We taught him how to eat, how to drink from a straw or sippy cup, and how to everything I can think of.
Robbie on the other hand, couldn't be left alone more than one second on a couch or bed, let alone on a table. At 6 months of age, he moved, and moved fast. As a baby, he didn't like to spend more than a couple minutes on my lap, and while he was on my lap, he was usually looking for something to grab, or simply just trying to climb to the top of my head. Robbie started to roll over just shy of 4 months of age, he was crawling at 6 1/2 months and walking by the time he was 11 months. I remember the day when I went to pick him up from his crib and there he was, standing up! He is talking up the storm now, and is even saying long sentences that Patrick, being 2 years older, can't still put together.
But what is most interesting about this, is not the fact that Robbie learned these things quick, but the fact that I didn't have to teach Robbie any of this. It's amazing how these things are so natural for human beings, at least, for most of us. Robbie had the curiosity to reach for things, and he figured out how to reach them, without waiting for someone to teach him that he could do it. It's in his nature.
I knew Patrick was more "calm" than our friends' kids, but it was only until I had a healthy baby 24/7 that I realized the huge difference in the process of learning between Patrick and most healthy kids.
This used to make me worry, because I know I'm not always going to be around to teach Patrick how to do things. As he grows, he is getting better at coming up with solutions and ideas on his own, however this process is going slow.
On the bright side, he is now more able to do certain things because of his interest to imitate. When someone is doing something totally new (and exciting) to him, he will just observe, carefully, and then he will imitate or at least try. This is how he learned to open gates, doors, pretend to use tools like daddy and pretend to clean like mommy.
Patrick has this eager for doing things that are meaningful and helpful to others. He is particularly interested in performing chores and activities that the adults around him perform - I know my husband can't wait until the boys get a little older and can begin some real yard work! However, while Patrick is a great helper, Robbie has absolutely no desire in helping us with basic things around the house, even though he has the ability to do it. Funny how things work!
I hope Patrick is able to find people that are willing to be patient with him along the way. I hope he meets friends and teachers that will be able to see that even though he struggles at coordinating his smart brain with his uncoordinated body, he is a nice guy who is always happy to help you in any way he can.
I wrote on my last post about our concerns regarding Patrick's social skills, stating that he seems to be overcoming his issues slowly but surely. Today, Patrick doesn't mind being around children, and by "doesn't mind" I mean exactly that: He won't play with them, but at least he is not bothered anymore that they are next to him. Until recently, I thought the lack of engagement was due to his developmental delays: 18 months ago, kids his age were running and climbing, when he couldn't even walk; today kids his age are singing and doing pretend play, when he can't even make a 3-word phrase. These seemed like legitimate, almost obvious reasons as to why Patrick won't engage kids, but now I'm not sure what to make of it.
Recently, a mother of a teenager with OMA came across my blog. She wrote me an email that got me thinking. Among other things, she wrote me this: "...The most heart breaking is her social skill. From 3 years old till now (15) she has great difficulty forming friendship. Whenever she attended birthday parties, she never participated in games or activities. She's most comfortable with kids much younger or adults. My daughter is much loved & protected by her family, cousins, friends of ours, but she has great difficulty in building friendship."
Patrick is social, but also he is not. I would say, he is very selective whom he is social with. The thing that got me thinking from that email, is the part where she says that her daughter is most comfortable with kids much younger or adults. This sounds like Patrick. Patrick's last IEP (the school Individualized Education Program) had an observation from his teacher stating: "Patrick will watch children who are playing nearby and he will play near them... Patrick mostly interacts with staff members." Do you see the different approach towards adults vs kids? When my sister and nephew were visiting, she pointed out how funny it was that when we were out and about, Patrick loved to say hi and shake hands to elderly people. Now that I think about it, I have never seen him spontaneously shake hands, or even say hi to any child around his age (other than his brother). I observe Patrick at the playground, soft room, water park... and realize, he doesn't like playing with other kids. He isn't mean to them, he simply doesn't engage. It takes a little while for Patrick to be comfortable to engage an adult, but once he is comfortable enough, he can be the most charming, playful and fun kid around. But then again, he won't get this way with children, no matter how much time he spends with them (he was with his peers 3 hours a day, five days a week, for 9 months!) The only lucky child to get Patrick's attention and play time is his 18 month old brother Robbie. This could confirm that it is all related to his developmental delay: Patrick is at or above his brother's developmental stage -Patrick can take the lead, and Robbie will follow him, whereas other kids are significantly advanced that are not taking considerations towards Patrick's developmental delays. If this is true, then it means that as Patrick's grows, and matches the developmental skills of other kids, he should have no problem making friends. I could think of this as a phase, but the situation of the 15 year old teenager rises the question if there is something else going on there. She is not 3 years like Patrick anymore. 12 years later, that mother is still concerned about her daughter not being able to make friends. Mother to mother, she asks me for any advice, but sadly I have none, because up until her email, I didn't think Patrick could continue to not engage people his age as he grew older. During this past school year, Patrick went from not wanting to play around kids, to being OK playing around kids, and I had hoped that in the upcoming school year Patrick would simply move from being OK playing around kids, to actually playing with kids. While this scenario may happen, right now I have no answers on how to help her daughter, so I'm asking any readers out there that have older children who have gone through this, to please let us know how have you/are you dealing with a situation like this one. From a mother to another, I can tell you that any advice, a word of encouragement, or simply sharing a common story so that she knows she is not alone in this, will be greatly appreciated. If you are a teenager or an adult with OMA who has challenges making friends, I'm sure this sweet 15 year old girl will love to hear your story.
A few months ago, a friend from college came to USA on a tour that included New York and Washington, DC. Since I moved to this country 7 years ago, I rarely get to see friends from my hometown or from college, so I was super excited to see her while she was in town. We were able to spend almost a whole day together. We took her to see the monuments (my husband loves giving a monument tour to friends and family), I brought her to my house and we had lunch nearby, and we also enjoyed a stroll with the kids in a wonderful evening in Washington, DC. It was so much fun to see an old friend, but it was also a very comforting visit, here is why:
We studied Communications together, we were in the same class for 4 years. Anyone you ask, they will tell you she was one of the smartest girls in the class. She had briefly lived in United States, so she speaks both English and Spanish. She lost her mother at a young age, but if anything, it gives the impression that such experience made her acquire a "motherly" attitude towards her friends: always looking out for everyone, and always willing to give you a hand. She is a good speaker. Never afraid to stand in front of an audience and talk, and she always has something to say, as she is a very well informed woman. She loves to travel around the world, and enjoys her current job as wedding planner at the Palace Resort in Cancun, Mexico. I was very impressed to hear the jobs she has held since she left college, and overall I could say she is having a very successful and happy life.
She asked me if I was planning on teaching my kids both English and Spanish, to what I said yes, and I added about how we put a temporary hold on Patrick, because he has speech delay, so I'm mostly interested in getting him to say basic things in our home's primary language (English). Then she said the words I never imagine I would hear from her: I had speech delay when I was a kid.
Then she went on to telling me about her numerous speech therapies and occupational therapies, all the medical appointments, the things she couldn't do as a child, her fine motor skills issues, her development delays... and all her challenges. The more she talked, the more I could relate -or Patrick, for that matter. She was familiar with all the things I told her about him, and I just couldn't believe she was telling me she went through all that herself. She, the girl that has absolutely no problem giving a public speech (and is good at it), the girl who is successful in her Public Relations job providing costumer service in an international arena.
She gave me so much hope. I would have never guessed it. How's it possible that she had so much trouble (medically speaking) growing up when she was a child, but now there is no resemble of it? What developmental delays? I could easily joke (not really) that she was actually way ahead than most in my class. She looks and is perfectly healthy now.
One day, my little boy will be a grown up man, and will tell a friend about his developmental delays and the medical issues he had as a child, and the friend he is talking to, will look straight at him, with a sincere surprised expression in his face and say: I would have never guessed it! I know in my heart this will be possible one day. At moments I felt like I was kind of hoping too much for Patrick and therefore expecting too much from him, but she overcame her obstacles, and the end results are priceless and flawless. Now, more than ever, I'm determined to help Patrick overcome his very own obstacles, because thanks to God they are temporary.
Patrick began babbling and saying "dadada," "mamama" and the usual cooing, around the same time other babies his age started. Before our kids were born, his dad and I decided that I would teach our kids Spanish and he would teach them English, and as Patrick was growing, I started to teach him a few words in Spanish. I had read somewhere that kids from bilingual homes usually are a little late on talking, so I guess I kind of expected all along that he would be a late talker. Late talker as in talking a few months after the average child.
Patrick, as of today, has the vocal skills of an average 18-20 month old baby. Patrick is 3 months short of being 3 years old. That's too "late" for what I had anticipated. While talking comes and develops naturally for most children, for other children, like Patrick, it doesn't.
I think it was until he was a little over one and a half years old, that I realized that his severe speech delay was looking like a real possibility. By then, we were all aware of his Oculomotor Apraxia and hypotonia, and the more I learned about his developmental delays, the more I realized "speech delay" was part of the bundle. When Patrick was 2 years old, his vocabulary was limited to mommy, daddy, babba (bottle), and to the sign language for the word "more." In the video below, Patrick is shy of 2 years of age.
As Patrick was growing, his frustration for his inability to talk was growing as well. The older he was getting, the more he was understanding, questioning, doing, and desiring. But he couldn't express any of that. I can only imagine how helpless one can feel in a situation like that. This was the reason number one to his screaming. You know how babies cry when are cold, scared, hungry, sleepy, thirsty, uncomfortable...? Well, Patrick, as the toddler he was, had turned that cry for a scream. He was tired? Scream. He was thirsty? Scream. He wanted to play? Scream. He didn't want something? Scream. He wanted something? Scream. Scream. Scream. Scream. The constant screaming would make me upset, which would then make him even more upset, and it would turn into a vicious circle from which I couldn't figure out how to get us out.
About five months ago, Patrick's vocabulary was limited to 6-8 word approximations, which made his therapists suggest to add more words in sign language to ease that frustration. So Patrick learned the sign language for more, I'm done/I don't want, and please. Ball. Ball. Ball. Ball. Ball. Ball... I had to repeat it dozens of times a day, while we were playing with the ball, until one day, there was finally a "ba." And that's what we had to do with many other words. Today, Patrick has about 40-50 words, most of them being mere approximations (nani = night night, tide = outside or inside, memi = Mary, nana = grandma or banana, didi = Jesus, na = Sam, pun = spoon, bapi = Patrick, pi = please...)
We had to teach him to point at things, too, to make it easier for us to know what he was talking about. Thankfully, he had finally learned to walk, so we taught him to hold our hands and take us to wherever was what he wanted (if he wanted to drink something, he would take us to the kitchen; if he wanted to go out, he would take us to the door, for example). He moved from twice a month therapies, to three times a month. Also, I attribute the improvement on his speech to the Omega 3s and the changes made in his nutrition that I talked about a few weeks ago.
Many children these days are late talkers, and I believe there shouldn't be any pressure on making them talk when they are not ready. However, Patrick was ready, he just didn't know how to. How do I know he was ready? Simple: It was affecting his daily life. His very own self was ready to communicate, but his mouth couldn't do it, making him upset and turning aggressive towards others. I can tell that when we let him know that we understand what he is trying to tell us, it is easier for him to accept a "not right now" if it is something that he wants and we can't provide at the moment. He is more involved in making decisions of what he wants to eat or what he wants to do, letting us know when he has had enough of something... and all these moments go by without meltdowns. The screaming, throwing and hitting are very rare these days, and I'm so happy to have my happy Patrick again.
Speech (or lack of) wasn't only affecting his mood and behavior, but was affecting his learning progress as well. Let me share a fond memory from my Epistemology course when I was in college: We were asked to read a children's book called Pixie, by Matthew Lipman. The book is about a girl who, among other things, asks too many questions. The funny thing is, that after the class read the book, I was dubbed Pixie (and I was called that for the rest of my college years!) because they said I asked way too many questions. Ha! Of all the numerous books I read during my school years, I think is a marvelous coincidence that this particular one is to this day stuck in my head, perhaps thanks to the nickname I got. But whatever the reason, the fact is that Patrick's new difficult behavior was making me think a lot about Pixie. Pixie inquires into the connection between language and things in the world, which give meanings to everything in our daily experiences. In other words, Pixie is meant to show us how a child makes sense of the world as she learns new words. Children like Patrick, who find it difficult to express themselves verbally, will have problems learning things because of their inability to refer to them. Whether is with word approximations, sounds, sign language or pointing at objects, we taught Patrick how to refer to things (objects, emotions, people...) and ever since, he seems to be learning a great deal of things at a faster speed as he ever did.
Everyone keeps telling us that he will talk more once he starts school. I do believe this because the very first words Patrick said were during a trip we made to Mexico. My family is very talkative, and there are always a lot of children around, so there was non-stop talking all day long when we were down there, which I think got Patrick motivated. He is still unable to put two words together, however, I think it's emerging now. Couple weeks ago, he spent a few days with his very bright and talkative friend Jackie (happy 3rd Birthday, Jacqueline!) and ever since that visit, he has been making an effort to put two words together: "acusacu bobo" which means: __________ Lobo (something about our dog). Couple days ago I brought an Elmo toy into the room where he was playing, and as he saw me he said "momo, si" (Elmo, sit), as he was pointing at the floor where he was sitting.
Jackie and Patrick playing baseball
Jackie and Patrick watching the Gorilla at the Zoo
Awhile back I was anxiously awaiting for the day when I would finally hear from Patrick "I love you, mommy." I'm not anymore. I know he loves me. What I don't know is what's his favorite animal, what he wants for dinner tonight, what he wants to be when he grows, what makes him sad the most, what he thinks of his little brother. When the day comes that he talks, God knows I will let my old "Pixie" get the best of me, and will ask him a universe of questions, because I know there is so much in that brain and in that heart of my little boy, that I just can't wait to know all about him!
The title of this blog, Overcoming Tiny Obstacles, couldn't have been more accurate to what we are experiencing... as the times goes by, I get more convinced about it. It's one obstacle after another. Tiny obstacles, but obstacles at last. Trying to overcome each one as they present, and praying and hoping that they don't get bigger, or more difficult, and that once and for all, they all disappear. But that's not happening... not just yet.
Just when we got all excited about the huge improvement of Patrick's low muscle tone, we discovered that his ability to talk was affected too. We thought that by being able to explore (by running, climbing...) the same way as his friends, he would reach the same developmental stage as them. But then speech delay came along and we realized how important was language in the learning process. How can he understand abstract concepts, like counting or feelings, when he can't even name the very basic ones?
Children's development can be classified in 5 different areas:
Gross Motor Skills
Fine Motor Skills
Feeding Skills
Speech Skills
Cognitive Skills
Some may also add Sensory Processing Skills (vision, auditory, touch, taste and smell) and Social Skills.
I think is important to dedicate a post about Patrick's cognitive development. Children with Oculomotor Apraxia usually have no cognitive development issues. Most times, Oculomotor Apraxia is part of a bigger health problem, like Joubert Syndrome, and in these cases, cognitive development is most likely affected. But, for kids like Patrick, whose only problem is a slightly underdeveloped Cerebellum Vermis, cognitive development is not affected.
