Overcoming Behavioral Issues: Talking to your children about their challenges.

A few weeks ago Patrick had a play date at the house. At some point, Patrick saw pretzels on the counter and he asked for it: Paqui wants Patses (meaning Patrick wants Pretzels -occasionally he still refers to himself in third person). One of his friends asked me what was Patrick saying, and when I told him, he said "Why did he say it like that? Why is he saying patses?" Patrick just looked at him and stopped talking, I could tell he became aware he wasn't speaking right and got shy. This caught me off guard, so I just said something like "Because everyone says things different... I think that's a fun way to say it" and I moved on, giving everyone pretzels.

Later that day, my husband got home from work and we went out to eat. On the way there, I talked to my husband about the incident, and we talked about a few other issues relating to Patrick's therapies. I honestly believed the kids were not paying attention to what we were talking. Once we got to the restaurant and my husband tried to get Patrick out of his carseat, Patrick turned his head away from his dad and avoided looking at him from then on. My husband immediately knew that Patrick had heard the conversation and he was feeling either embarrassed or upset, or both.

That weekend we went to see a theater play for children, but Patrick was very sensitive. He cried a lot and asked to leave when he saw all the people. We were able to convince him to stay and eventually he enjoyed the show, but he had to sit on my lap the whole time. On Monday he had Ocupational and Speech Therapy. We were told that the gym they usually work on was being used, so they had to go to a different one. Big mistake.

He threw a fit. He had an absolute meltdown and cried for so long. It was hard for the two therapists and myself to calm him down. We had to do a lot of negotiating with him to eventually get him to cooperate and play at the session. I had to stay with them the whole time. He began to enjoy the therapy the last 10 minutes or so, but then it was time to leave. Another big mistake. He began to scream and throw things and cry. He didn't want to leave, but he didn't want to be there either. He began to run around the hallways crying out loud. The therapist and myself were trying to reach him to calm him down but it was impossible. He found an empty gym and so he ran across that room, to the opposite corner, where he found a place to hide and once in there, he threw himself on the floor and just cried. He cried and cried and cried. I had never seen him like that. He wasn't throwing a fit, this was different. I could see my son hurting, I could see my son suffering and crying his heart out.

I let him cry for a little awhile. I knew he needed to get it out, whatever it was that was making him sad, and given that his speech is limited, and hitting people or things isn't really his thing, I figured tears would do it for him. He then was able to come with me and leave that place. I couldn't wait to leave the place. He left for school OK and he was calmed the rest of the day, but he was a little sad, too.

On Tuesday we had therapy again. The therapist made sure the usual gym was available this time, so he was able to go in by himself. At the end when the therapist came to talk to me about what they worked on during the session, Patrick got upset and started to push his brother and grabbed a trash can and threw everything out. He was running and pushing things, just trying to grab my attention I guess. He was very upset that I was talking to his therapist. We had been doing this for 4 months now, and never had a problem like this.

Couple days later we went to try out one of the MyGym classes for toddlers. Patrick was a nightmare there. At first he didn't want to participate on anything. Once he was comfortable enough, he began to push things, he wasn't listening to me much, he was playing rough, and when it was time to leave, he had another meltdown. He cried for a long time. I'm a short person, and Patrick is a 4 year old boy who is actually on the tall side, so controlling his crazy movements isn't precisely easy. It's winter time so there I'm trying to put his shoes on, jacket on, gloves, hats, and do the same with his brother but it's impossible. I'm completely on the floor trying to control my child. Parents come and go and I can tell everyone is giving us the look. It's Thursday and it's been like this all week. Complete meltdowns Every.Single.Day. At this point I'm emotionally exhausted.

What's happening to my son?

We talked to his teacher and the therapists about this new behavior. By "mistake" we attended a support group for parents of children with Sensory Processing Issues (I will talk about this on my next post) so we talk to those parents about this, too. My husband and I talk about all of this over and over trying to figure out what to do. Also, we recently began to watch the TV Show Parenthood -and coincidentally we watched the episode where the parents realize is time to talk to their child about his Asperger Syndrome and asked the psychologist for help. Everything above got us to the conclusion that it was time to talk to Patrick about his challenges.

It became obvious that he is now self aware that there are a few things that he can't do like everyone else. It's obvious that his behavior is telling us that it's bothering him, so we need to talk to him about it. But it's also obvious that he is just a 4 year old and we don't want to burden him with information he may not only not be able to process, but also that may make him too self-conscious and with low self-stem. We are told we need to talk to him, but it has to be very informal, very short, very basic, and in a very loving way. I mustn't cry when we talk so perhaps is best his dad says something. And he does.

While I'm serving dinner, I overheard his dad asking him why he thinks he goes to "fun class" (therapies), Patrick doesn't answer. My husband tells him "We all have things that we are good at, and things we need to practice more. You need to practice your speech a little, but you will be fine in no time because Ms. Morgan and Ms. Kristin will help you with that. Maybe Robbie some day will need to go to fun class, too. There are things you can do better than Robbie, and things Robbie can do better than you, and that's OK, we all are constantly learning. We are so proud of how hard you work and we love you very much."

Patrick only said OK. He acted like he didn't care much about that talk, but he did. I know it, because the meltdowns disappeared after that. We understand now that he has difficulty controlling his emotions, or knowing how to react and what to do with his feelings. I know, too, that he will have more episodes like this one as he grows and new feelings arise. But my mental attitude will be different. I won't let negative thoughts get the best of me. I'm my son's biggest support, and if I'm not 100%, how can he be 100%? I won't worry about what is about to come. For now, he knows we got his back and we love him, and he knows we believe he is perfect just the way he is. He knew all this before, too, but sometimes he will need to be reminded, and that's OK, because we are his parents, and this is what we do.

Overcoming Behavioral Issues: Sensory Processing Disorder (How is Patrick affected?)

As I mentioned on my last post, Patrick was evaluated by an Occupational Therapist, who tested not only his fine and gross motor skills, but also his Sensory Processing Skills. Patrick's evaluation displayed scores in "Some Problems" range with Touch and Body Awareness; "Typical" performance range with Social Participation; and "Definite Dysfunction" with Vision, Hearing, Balance and Planning and Ideas.

Vision and Hearing.
I will start by addressing these areas, particularly "hearing", because it was the first problem we discovered. Since Patrick was only a few months of age, we noticed he was extremely sensitive to loud and unexpected noises. We know some babies are afraid of the vacuum cleaner, for example, but Patrick used to cry totally freak out to noises like the faucet on the bathtub, a blender, doorbell, music or TV that are unexpectedly turned on, animal sounds, and even stuffed animals noises, among many other things. As Patrick grew older, his tolerance to some of these noises got better, however, his over-responsiveness to certain unexpected loud sounds continued and began to concern us.

He was also very afraid of small, fast-moving objects and animals. We thought maybe it was because of his eye disorder. Patrick's eye condition (Ocular Motor Apraxia) make him have difficulty tracking objects moving horizontally. Imagine one year old Patrick seating on the floor, then suddenly a dog comes barking and moving around. Patrick not only can't run away (or even crawl -due to low muscle tone), his eyes also have difficulty tracking the dog's movements. So what does Patrick do? He gets afraid of being attacked without being able to defend himself, so he starts having a panic attack. Perhaps baby Patrick believed stuffed animals could voluntarily move, and that's why he used to be afraid of them, too. This is how my husband and I made sense of the situation, but we didn't know how to help him avoid getting panicked.

When he was almost 3 years old, we talked to his OT about all of this and she was a life saver. We used to grab the doggy (or whatever was making him afraid) and be like "look, it's fine, it won't do anything to you, look, I'm petting it, you can pet it too! Which she told us was an absolute mistake. The thing is, Patrick is in panic mode, his mind is so far away that he won't reason to "it won't harm you". So the OT said we should not force the child to confront his fear right on the spot. Instead we needed to respect his fear, and say "bye talking bear, byeee" and put it away. Eventually he associated the "bye" with taking the scary things away, and so he began to say "bye" on his own to things he didn't want. All we had to do was to listen to his "bye" which in other words meant "take that scary thing away from me" and so we did just that.

It made a whole world of difference. He could be in control of the situation, and he knew we would respect his wishes. If we went to the Zoo, he would be so excited walking towards the animals, but at a certain point he would say "bye elephant" and we just knew we were getting too close to them, so we would stop right there. Any step closer could mean total Panic. We knew it, and he knew it. So we would just admire them from the distance and move onto other animals. As he grows he gets more familiar with them and the distances get reduced. He is just very cautious all the time, but warms up to anything eventually.

Touch and Body Awareness
It took a long time for Patrick to stop mouthing toys and other objects. He was waaay passed that stage, but he continued doing it. Eventually he replaced the objects with his thumbs, and so now he likes to put each thumb all the way back to each set of molars and chews on them while he is watching TV or trying to fall asleep. He is often sticking out his tongue or pushing his lower teeth with it. We know now that it's all about seeking that sensory input in his mouth. We use chewy tubs and seem to help.

He puts a lot of pressure when drawing, and often times doesn't realize the strength in which he pushes, opens, pulls or moves things. He grasps objects so tightly it is difficult to use the object. His hands are always making a fist, not because he is ready to hit someone, but it's just the way he moves around.

His body in general is sensory seeker. He loves standing under the shower just to feel the water in his body. He doesn't sleep unless he has a somewhat heavy blanket on him. Ball pits are his f-a-v-o-r-i-t-e thing in the world. He loves throwing things (and he has amazing aim) so we have plenty of soft balls that he can throw around the house and a jump-o-lene where he can just throw himself and get the deep pressure he wants. Robbie is a tough little guy and his dad of course loves playing rough with them so thankfully Patrick gets ways of satisfying these sensory needs. He loves to be hugged tight, too, and this is definitely my favorite part. =)

Balance and Motion
The vestibular system (located in the inner ear) is in charge of several things such as postural control, perception of body movements in space, gravity, attention, bilateral coordination, ability to cope with stress and auditory-language among other things. His balance and coordination aren't perfect. Heights, uneven surfaces, narrow paths, stairs... all these make him move with extreme caution. He bumps onto things and people often. Patrick can't ride a kiddie bike, and I can already tell it's going to take years before he is able to master that skill. He is much more sensitive and adverse to vestibular input than other kids. This sensitivity contributes to avoidance and hesitation with daily activities that involve vestibular input.

Sometimes it feels like Patrick isn't 100% aware of where his body parts are. If I tell Patrick to touch his cheek, he has no problem doing it. But if I touch my cheek, and ask him to imitate me just by watching me, he may touch the lip, or the forehead, and may take him a couple tries before he touches successfully the cheek. And if I were to cross my left hand all the way to right cheek... well, forget it, he is just going to raise one hand, then the other one, and touch his hair, then try with the other hand, then start all over...

Planning and Ideas
The difficulty in performing the tasks mentioned above are affected also by his struggles with planning and improvising. Patrick often fails to complete tasks with multiple steps and has trouble coming up with new ideas during play or other activities.  Motor planning plays a huge role in the way he approaches things and places. I know he struggles with this. He is not able to put on shoes or dress himself or to even take off his jeans without some sort of help. At first I thought it was just related to his low tone which caused fine and gross motor delays, but now I know it's mostly due to his difficulty planning.

Just to put an example, for awhile I had the Pack 'n Play filled with small plastic balls, so the kids could use it as a ball pit. One day, Robbie (15-18 months old) placed a stool next to the Pack 'n Play, he climbed on to it, and then he climbed into the Pack 'n Play. I was amazed that he had already figured out a way to get in without help, while Patrick (3 1/2 years old) hadn't all that time. On top of this, when Patrick tried to imitate Robbie, he got stuck climbing into the Pack 'n Play. I saw how difficult it was for him to decide which leg had to move first and how, and then what arm goes next... For Robbie there was no thinking, once he was on the stool, it took him a second to jump in. But with Patrick, the movements aren't spontaneous. He has to think it through, and then he struggles coming up with the plan and coordinating his own body to accomplish said plan.

Social Participation
I addressed Patrick's social skills on this post. There isn't much to add other than he recently had few episodes of being very uncomfortable in closed spaces with a lot of people. He also seems to be bothered by routine changes, sometimes with things so simple like placing my purse on the couch instead of the table where I usually put it, or his dad sitting on the right side of the sectional sofa instead of the left side, where he usually sits when we watch a movie. Not sure if these are social participation-related, but one thing I know is that two weeks ago he was having a really rough time being "out there" because of situations like these. He was having meltdowns almost every day and it was difficult on me to see him going through it. I know I was supposed to talk about it on this post, but this is already long enough that I will have to leave it for next week.

Enjoy your weekend!

Overcoming Behavioral Issues: Sensory Processing Disorder

Last year I blogged a series of posts related to Patrick's behavior. I called these series "Overcoming Behavioral Issues" and I identified 4 main reasons that were triggering Patrick's bad behavior:

1. Speech delay
2. Nutrition
3. Sensory issues
4. Medical condition

I wrote separate posts to explain with more detail his communication and nutritional issues, but I really never got the chance to talk at length about how his medical condition was affecting his behavior.

This week is the perfect time to resume the series, Why is that? Because this past Monday we had a really, really, really bad day. But before I tell you what happened on Monday, I think is important to explain what is Sensory Processing Disorder, or Sensory Integration Dysfunction.

I found the best explanation (everything in blue) on the SPD Foundation's website:

Sensory processing refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration." 
So basically, we are wired to respond to everything we feel and perceive through our senses. What we hear, what we eat, what we touch, what we see, and what we smell - everything is processed in our brain and then in turn this emits a response, like if we hear something too loud, we may cover our ears, or if something is too spicy, we may spit it out and get some water! 

Sensory Processing Disorder  exists when sensory signals don't get organized into appropriate responses. It's a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. 
Imagine a classroom with 10 children, and suddenly the fire alarm goes off. Five kids get surprised and maybe a little scared, they immediately look at the teacher waiting for her reaction to explain what's happening and what to do next. Two other kids are too busy playing to get too concerned, they do notice the noise, but they just wait to see if it goes away. Two younger kids get scared and cry, but as soon as the teacher explains that it was a false alarm and everything is OK, they calm down. And then there is one kid, he panics, he hides, he cries and screams and shakes... it's hard to calm him down, it's hard to get him to listen and it takes a lot longer and much more effort to get him to stop screaming. This last child shows an overreaction to a loud noise, this reaction is an indication that the "cause" is provoking an "effect" that isn't within the norm, hence, it shows that there is a disorder in the way he process this sensation. 

Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life. 
My husband tolerates spicy food more than I do (and I'm the Mexican one, you would think I could eat a jalapeno and no complain!) but does my sensitiveness to spicy food mean that I have a sensory issue? No, it doesn't. The key to identifying the difference in "every person perceives things different" from an actual sensory disorder, is when that "different perception" affects your life. When it's affecting significantly the way you socialize, the way you learn and the way you are, that's when you know it stops being a normal thing and it becomes a more serious issue that needs to be addressed. 

Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. 

The child in that classroom who panicked at the fire alarm, may only have an issue with loud noises, while the sensations coming from his nose, mouth, touch and eyes are perfectly OK. While this child overreacted to the situation, there are also children with SPD who may show no emotion, no reaction whatsoever to a sensation that otherwise would cause reaction in most people.

Still other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed - and inappropriately medicated - for ADHD. 
A child who is often pushing other kids, throwing things and actively searching for physical input, might be thought to have ADHD, when all he needed was to get his need for physical stimulation taken care of. These kids benefit from taking a break from the classroom activities to enjoy a few minutes of physical activity, and after receiving the input they needed, they get back to their classrooms and work perfectly fine along their peers.  

Often I feel like SPD is the new ADHD or the new Autism, in the sense that SPD sometimes is treated like a trend: More and more often kids are (mis)diagnosed with it. A child that's too shy has Autism; a child that is too active, has ADHD; and today, a child that may fall in either or has SPD. Do all the kids diagnosed with SPD really have a legitimate medical problem in the way they process their sensations, or are we not letting kids be kids anymore?  We need to be careful when applying any of these terms to our precious little ones, because there are kids who really have SPD, ADHD and Autism, and are looked down by other people who are so tired of all these disorders on the rise. On the other hand, there are many children that don't have these conditions yet are diagnosed and treated as if they did, causing real problems in the child. 

For the parents that believe their children may be affected by SPD, you can read this article that talks more about the trend vs the real issue. I encourage you to get your child evaluated by a professional Occupational Therapist who will be able to tell you if your child has SPD or something else, if anything. We have known about Patrick's sensory issues for a couple of years, even though he was officially diagnosed until recently. Coming to terms with "he actually has it" vs "he is just a child going through a phase" was somewhat easier for us because we have seen a scan of his brain. His MRI actually showed a somewhat messy and underdeveloped cerebellar vermis - the part to be believed to control the way we react to things. Luckily for him and for us, it isn't affecting all his senses, but for the senses that are affected, well, let's just say I had a real taste of it last Monday, and it wasn't good.  We had been managing his SPD just fine -learning what to do and what not to do... but last Monday was rough. It's just so hard to see your child suffering and not being able to help.

Stay tuned for the next post, this is To Be Continued...

Whatever the mind can conceive and believe, the mind can achieve

I have written a number of posts where I've talked about all the challenges that we face dealing with our son's significant developmental delays. Keeping a positive mental attitude has been the greatest aid in keeping us going and keeping us hopeful of a brighter tomorrow.

I have been somewhat involved with the Napoleon Hill Foundation for a few years now, but it wasn't until I wrote my last post on October, that I realized that many of Napoleon Hill's keys to success are being constantly implemented on my family's life. As I wrote about the difficulties my son had matching the skills of his peers -and how I used to get sad and feel self-pity thinking I had in front of me a situation I could not control; and how, I slowly began to overcome my doubts and started to believe more in my son, in God, and all the resources we had available to us- I realized how much Napoleon Hill's philosophy was helping me help my son.

Coincidentally, for this 2015, the Napoleon Hill Foundation is writing on their weekly Ezine children stories (literature) that relate to Napoleon Hill's keys to Success. This was to me, another "sign" that the philosophy can very well be applied to children, to children like mine. I wanted more of that food. I wanted to learn more about the philosophy, and I wanted to become a lot more disciplined, too. You see, I have so many ideas to help out my son and many other parents around world, but I have struggled putting my ideas to work. Procrastination and not having a set schedule to organize my everyday life was getting the best of me, so looking for help I decided to start a Distance Learning Course with the Napoleon Hill Foundation.

The first week, we had to decide on our Major Definite Purpose. I knew what it was, but the necessary steps to accomplish it were vague. I never put too much thought into it, let alone write about it. But this time, the course required that I explained it, and by writing down my purpose and my plan to accomplish it, it became more clear. Realizing all the work and time required to accomplish my goal, it became clear to me that if I were to continue the way I had, I wouldn't get too far, or it would take me longer.

Like I said, I'm not as productive when I don't have schedules/deadlines, so I had to start there. Who says stay-at-home moms don't need schedules? And by that, I don't mean just writing down the Pediatrician appointments, school meetings, soccer practice... I mean, having a set schedule, from the moment I wake up, to the moment I go to bed. From the weekly time I have to set out to work on my blog, to read, to spend just in myself, to the time I need to spend sitting down (or running around) with my children and forget about everything else. From the time I need to spend doing house chores, groceries and cook, to the doctor and therapists appointments, and to the time I have to invest to accomplish my Major Definite Purpose. Of course there is time for improvisation, too -that free time where nothing is scheduled and I can just be spontaneous and do what I want... or what is needed.

Kids like Patrick, as it also happens with kids who have Autism, benefit significantly from schedules. As a matter of fact, not having a schedule on their lives makes them uneasy and uncooperative. I have known this for awhile but I don't know why on earth it took me this long to do something about it. But we are on tract now. I'm wearing the Positive Mental Attitude hat, and this time I'm actually working towards my goal, too. You will hear from me more often, and you will see good things are coming for the Ocular Motor Apraxia community. If you want to get involved, just send me an email, because I will need help! I'm committed. My son is my motive, and I'm going to make it happen, because like Napoleon Hill said: Whatever the mind can conceive and believe, the mind can achieve.

Cheers to a better, brighter and healthier 2015!

To the new parents of kids with special needs

A couple of months ago, I took Patrick and Robbie to the softroom at the Lee RECenter. The place was empty and the kids were happy to have the whole room to themselves. Shortly after we arrived, a mother came with her son, accompanied by who I think was the grandmother. The little boy must have been around 1 year old, judging by his height. He was very skinny, however, making him look significantly younger, and looking also quite fragile. Mom and grandma were trying to help him stand with support. The softroom is such a great place for little ones with low muscle tone. I know it was great for Patrick. They were also keeping him on his belly as if trying to make him crawl. I remembered those days. The boy was wearing prescription glasses. I'm always curious about little kids that wear glasses, because Patrick has an eye disorder, so I feel like asking all sorts of questions, but I never ask.

It was obvious that the baby boy had some sort of health condition causing his fragile appearance, his low muscle tone, and the eye problem. When I see mothers of kids with disabilities, I feel like saying hi. I feel like telling them that I have one of my own. I want to exchange tips on how to help our little ones. But granted, I never say hi. I just don't know how they will react. This time, I thought, I should give it a try. There was nobody else in the softroom but us, and they seemed like nice ladies. I was getting ready to start a conversation, when the baby, who was on his belly, started to throw up. The mother was all nervous, probably worried that I would mind that the boy just threw up on an area where my kids were playing without shoes. The grandmother immediately rushed to help her and hold the baby while the mother quickly cleaned up. And then I saw it. That face that just someone who has been through it, is able to read: I saw her trying to keep it together, when all she wanted to do was to cry. They left immediately after. They had spent a total of five, maybe ten minutes in there, but once that happened, she just couldn't be there anymore.

I was her once.

It often happened when I was new to this whole thing of having a child that is less than perfect healthy wise. Seeing kids that were Patrick's age running around in the playground while he was sitting there not being able to move would just break my heart. All sorts of things would go through my mind and heart at that point: Will he ever walk? Will he be a sad boy when he becomes aware of his disabilities? Feeling ready to burst in tears, I would just pick up Patrick and leave the place.

I'm glad I'm over that phase. It's very good for me to stay around kids his age that are able to do 10 thousand more things than Patrick is able to do, and it's even better for Patrick to be around them, so that little by little he learns to affront his obstacles. He learns significantly faster by observing and imitating other kids than from me or the therapists teaching him. But the fact that now we are happy to "stay" socializing with healthy kids, trying to do the things they are doing, doesn't mean there aren't times when I feel sad when he can't do something. It's less often, but it happens. Actually, it happened very recently:

We went for the first time to the KidzNMotion in Woodbridge, VA. There are all sort of bounce houses, giant slides and some other things for kids of all ages to play with. There was one gigantic slide where Patrick saw both older and younger kids having fun, so he wanted to try it. In order to go down the slide, first you had to go up on narrow inflatable stairs, and as you can imagine, it wasn't as easy as he had thought. I figured it would require more time for him than it takes other kids to go up, so I waited until it wasn't crowded to have him on there. I decided I would take a video of him going up, to share it on this blog when talking about what are the fun things kids can do that would help improve their coordination, balance and low tone issues. Oh boy I never thought I would actually share this video on a post talking, instead, about feeling ridiculously helpless at my son's challenges. The first video shows Patrick the very first time he tried.

He kept trying a few more times, before understanding the way he had to coordinate his legs and arms in order to be able to climb. When I saw that he had made quite the progress, and that he had the intention of going all the way up, I decided to take a video again, knowing it would be the video to share about the work out kids with low muscle tone get on these things, and how much fun it is because after the work out, they get to go down the slide. Not once I thought that Patrick wouldn't make it that far.

There are so many things you can see on that video. First, Patrick gets intimidated by another child who wants to go up. He is aware that he is too slow and by her being behind him, he feels pressured. So he decides to give up even before trying. Next, you see him watching the girl going down the slide, and remembering that that's the goal, he decides to try again. For a little while, he does pretty well going up, all things considered. Then, there is that point where he gets stuck. He is so close, so close to the end, but he just doesn't have the physical strength and ability to finish the job. He was about to cry, and kept turning his head at me like trying to get some help. Lastly, he gives up, and comes back down, letting me know it was too "big", and trying to forget about the incident, he moves on to other things.

One thing you don't see in the video: Me, trying to keep myself together to not burst in tears. I couldn't even utter a single word to encourage him to keep going. Seeing him trying so hard, so hard to hang in there and finish that last couple of steps, and then realizing that that's just not going to happen, made me so angry with life, and so sad. Actually, I think I shred a few tears, that were quickly wiped off because I didn't want to feel embarrassed of other people seeing me, including Patrick. There are things that Robbie can't do, and doesn't make me sad at all... But with Patrick is different. I know he has a rare health condition, so when things like this happen, I'm reminded of that. These challenges remind me that often times, Patrick won't be physically able to do something right away because of the way he was born, and this makes me sad. How couldn't it? He is my sweet son.

Just like the mom at the softroom, I could have just left the place. But I have done that enough. It's been a couple of years now of dealing with this, that leaving is not an option anymore. So I took off my shoes and decided to help him myself. We found a smaller slide, and I figured we should start there. Then a bigger one. Then we found one that was almost as big as the one that he couldn't go on, and although he was hesitant at first to give it a try, I encouraged him and let him know we had all the time in the world to try. Kids like Patrick need extra time to learn and do things. Then I let him do it all by himself, and he did it. He was so full with joy I felt like crying again. Happy tears this time, of course. He had a blast on that slide and he was happy that mommy and little brother were having fun there, too. Maybe next time we go there, we will give the big slide another try. Maybe he still won't be able to climb it, but that's OK, we know there are plenty other ones that he CAN do, and we know, too, that with enough practice, one day he will be able to climb that slide. He will overcome the obstacles. I know that now.

As the time goes by, you will learn from your mistakes. Eventually, you will get thicker skin and discover that you can actually endure whatever comes your way. You will meet other parents going through the same path you are. Seeing those parents hanging in there is comforting and encouraging. And when our kids finally accomplish something, as little as it may seem to others, the joy you will feel won't simply compare. Sometimes our special kids need more time and patience, than our help. Sometimes they need more trust from us. If they know we believe in them, they will believe in themselves. My Patrick is the happiest when he helps me carry the groceries from the car. He struggles a little trying to not lose balance while holding the small bag of food, but he is happy to help me, because, you see, his biggest need is to know that he is needed. That I need him. All we want is for our kids to be happy, right? Well, nothing will give them more joy in the world than the many ways you can show your love for them.

If you are a new parent of a child with developmental delays, and to the mother who left the softroom feeling helpless and sad, all I want to say is, it gets better. I promise you.

Speech Update

Patrick is talking more!!

Let me start by saying that Patrick started taking speech therapies from the county's Infant and Toddler Connection when he was 2 years old. After a little less than a year of ST, Patrick started preschool (which ended his right to receive speech therapy from ITC) and we were told that he didn't qualify for ST at preschool (later we learned that this was based rather on the lack of school funds) and while he definitely had a delay, they told us that his speech would improve just by attending the school everyday, as this was language-based.

We gave it a try for a year. They were right in the fact that Patrick's speech improved, but the progress felt somewhat slow, specially when he had play dates and I would get so amazed about the extensive vocabulary, clarity and conversation abilities other kids his age had. So we decided to give private speech therapies a try. I'm part of a facebook community group in my area, and weeks ago there was this discussion about speech therapies. One person said these were a waste of time, because the very simple exercises were things you could just get by reading a book about it or even finding tips on the internet. This person either had a really bad experience with therapist, or simply didn't know what she was talking about. You see, I'm committed to help Patrick with his speech (and other) issues, and I try to educate myself on these things, but unless I spend a few years really investing a good amount of time learning about all the speech AND language issues (there are many!) and the various techniques specific to help each problem, I won't know as much as someone who actually did invest all the time focusing on learning these things, whether that person was self-taught or at school. The advices I get from online and books help, but slowly, while the improvement we have seen since he started taking private speech therapies has been ridiculously fast.

So the only thing I regret about private speech therapies, is not having done it earlier. It has been wonderful! After some research trying to find a practice that accepted our insurance (therapies are quite expensive!) and that wasn't too far from our house, we found Exceptional Children's Center in Springfield, VA. Coincidently, on that same facebook threat, I was happy to read that some of them said Exceptional Children's Center was great and had helped their children significantly. By then Patrick had been there just a couple of weeks and we both had learned a lot. I absolutely love this place... And Patrick does too! Why do we love it? This is why:

After me inquiring over the phone about their services, a Speech Pathologist called me back to learn about my concerns in regards to Patrick's speech, which was a very informative conversation. The very next day I received in the mail a package with a brochure and other information. We were off to a good start. Patrick had an appointment for an evaluation, which lasted over 1 hour. The place was nice and clean, and the staff were nice as well. Days later I received a very extensive report (best medical report ever) with all the findings and suggesting Patrick to take 30-minutes, twice a week therapies. It also included short-term and long-term goals. Patrick has been taking therapies for 6 weeks now and we couldn't been happier. We call the therapies "fun class" and he gets excited when I say we have to go to "fun class." He sees two different therapists and they are both great, they have given me so many advices.

One therapist seems to be focusing on the way Patrick pronounces words. For instance, we are working now on the sound of the letters P and M. Instead of closing his lips to make the sound, Patrick sticks out his teeth over his lower lip making a somewhat similar but not the sound of the letter M or P. By her suggestion, we are practicing in front of the mirror so he can look at the way he moves his lips. We also practice many words with the letter M, specially sounds that are fun, like Mmmmm yummy! For 25 minutes, the therapist works on these specific sounds while playing board games, puzzles, matching, and various toys that can be related to what he is learning. Then the last 5 minutes she comes to the waiting room to talk to me about what they worked on, and what we should be focusing on for the rest of the week. In the next video, you may notice how sometimes he puts his lower lip inwards when trying to say the letter M or B or P. To be honest, I hadn't realized this was something that needed to be addressed until the therapist suggested it!

The other therapist is focusing on getting him to get longer sentences. When Patrick wanted an apple, he used to point at the apple and say either "more" or "apple" and occasionally he would say "more apple." He would use the word "more" even if it was the first time he was requesting something. So the therapist suggested to teach him "want" instead. "Want" is a bit more universal as he could use it in many situations that didn't necessarily involved wanting "more" of something. After one week of doing repeatedly "want _______" (surprising how  many times a day toddlers use the word "want"!) the therapist suggested we added "I" to the phrase. "I want apple," "I want cars," "I want eat." This worked really well, that after a couple days we decided to add another familiar word: "Please." "I want apple please". We give him the cue "I" and he immediately does the whole 4-word sentence. Sometimes, I don't even have to say "I", I just have to put my hand over my chest, or mimic with my mouth the word "I", and he says the whole thing.

Sign language has been helpful, too. I believed that sign language was helpful for when he couldn't talk, but since he started saying many words I forgot all about them -until the therapist reminded me that they can be very helpful still. He knows about 6-8 sign words, but instead of making him use them, I use them to give him the cue to say the word. So when he forgets to say "please" at the end of the sentence, I just have to do the sign language and he says it out loud. Aren't these ideas so simple, yet so great?

For him being able to say "I want cars please" is a huuuuuuge improvement. Repeating often a 4-word sentence, even if it's the same, it helps him to get his mouth and brain get used to put words together. Now he comes and asks me "whaa ya doin mommy?" all the time, even if I answered to him three times already that I'm cooking or whatever, or even if it's obvious what I'm doing. I think he just loves knowing that he can make a request and get an answer, so he keeps repeating his new "long" phrases all the time. Robbie, cars coming! Daddy come here! Mommy look here! Patrick found it! And speaking of "Patrick found it" are you familiar with the way Elmo from Sesame Street talks? Well, Patrick also likes to talk in third person when speaking of himself. It was very cute/funny for awhile but now we are trying to get him to be familiar with me, you, I, we... so in the video below, you will see both the use of the 4-word sentence we have been practicing, and how he says "Patrick found it" towards the end.

I wanted to point out that I didn't receive any compensation from Exceptional Children's Center for writing this post, to be honest, I'm pretty sure they don't even know about this blog, let alone that I'm writing about them!

I will write another post about speech in a couple of months to see where we are by then!