May Recap (Baptism, Disney and family visit)

Here is the family Recap for May:

We celebrated Robbie's Baptism. The Ceremony was held at St. Louis Catholic Church, and the reception was held at the Stone Mansion. It was a good time. We were specially happy to have my parents and brother (coming from Mexico) and Tim's parents and sister (coming from the Midwest) joining us for the celebration.

Robbie in his Christening gown

The proud grandmothers!

Have I ever mentioned that the first time I came to the U.S. was as an Au pair? It was almost 7 years ago, right after I finished college. As an Au pair, I had the blessing of taking care of two adorable children. They and their parents are truly wonderful people, and despite that I only lived with them for 1 year, they treat me and mines as their family, so to make it more "official" we asked the mom, Melanie, to be Robbie's Godmother*. From Tim's side, we chose the Godfather*, Mike, who is one of Tim's best friends. I have probably mentioned him and his nice family a number of times on my posts, when I refer to "our friends from New Jersey" (also Patrick's Godparents are our friends from NJ). Robbie's Godfather and his family will soon become "our friends from PA" as they are moving to a beautiful house there in the next few weeks.

The Priest, Tim, Melanie, Mike and Robbie.

After the Baptism, we drove to Orlando with my parents and brother. They wanted to go to Disney and we couldn't say no, of course. I've been wanting to go to Universal Studios to check out the Harry Potter castle and all, so the first day of park visits, that's where we went. There was nothing for Patrick and Robbie to enjoy there, because they are too young, so it was more of a park visit for Tim and I than for the kids. We will make sure to take them back to the Disney parks when they are at least 6 years old.

Mommy and Patrick about to get eaten

We stayed at the Orange Lake Resort (a good friend of us had time share there and was kind enough to let us use it). The cabana was spacious and the hotel was huge, but the best part was the lazy river, where Tim, the kiddos and I spent the second day (while my family was at Epcot -Tim and I have been there before), with breaks to eat and rest at the hammocks. I know, I want to go back like... tomorrow -today is not a possibility since I still would need to pack everyone's suitcases.

Robbie is underneath the white hat!

My kiddos chilling... Jeez, I can't believe I have two boys!

The third day we went to visit some family members in Tampa, while my parents were at Magic Kingdom (of all parks, they said this was the best by far, so now I can't wait to visit) while we were in Tampa, we ate at Columbia, a Spanish restaurant that claims to be Florida's oldest Restaurant. The food was great!

Robbie with his third cousin, Carolyn

Patrick is a people's person (specially if they are blond)

Having both sets of grandparents in town during the Baptism weekend, we decided to get some professional photos by Peter Stepanek at the Glenview Mansion. It was a good time and we got many cute pictures, here are a couple of them.

The whole family!

Auntie Cath with the kids

My boys

It sure was a busy end of the month!

*For Church purposes, we can only select one Godfather, and one Godmother. Traditionally, someone chooses one from the mom's side, and the other one from the dad's side. However, we consider both sets of couples as Robbie's godparents (so for us, he has two Godfathers and two Godmothers) we did the same with Patrick.

Happy (belated) Father's day (and June Recap)

Hi there!

Sorry for the loooong silence. The end of May was busy, and June had a broken laptop, but now I have a number of posts on the work that will be all posted on July. I will make up for my June absence, I promise.

So, happy father's day, dear daddies. We often praise (yet not enough!) the hard work of mommies, but hardly ever talk about the amazing job that daddies are doing around the globe.  I'm not talking about working and bringing the money to the house... that's like praising a mom for cooking and feeding the kids. No, I congratulate the ones that go the extra mile. 

One thing (of the many) that I admire about the American culture is how involved are dads in the raising of kids. When I came to the U.S. for first time, I was quite shocked to see that many men here loved making the family meals, and gardening, and taking the kids to their extracurricular activities. I married one of them, which is great considering that I kill all plants and if it was left to me, my kids would only eat Mexican food (my menu is not that long either.) So if we invite you to dinner one day, and you think our garden is beautiful and we have shepherds pie and delicious home made bread pudding, you will have to thank my husband for it.

But going back to children-dads relationship, about everywhere we go with the kids, there are dads with their kids. Unless is during the day, during the week (when dads are usually working) children's places are filled with dads. It's not rare that we will take Patrick to the soft room at the RECenter, and there will be more dads than moms. It was not a coincidence that Patrick's first swimming class had more dads than moms. The pediatrician office is often outnumbered by dads. When we go to museums or playgrounds, I notice that moms usually step back to take care of the babies, while the dads are hands on, running around and playing with the older kids. Having a family where both mom and dad are involved in their children's development and education, is the best we can do for society.

Patrick's first swimming class

So let's talk about the dad of my children. Have I said that I'm overjoyed to have a son that loves me more than anything? Robbie loves me more than anything on this world. That's right, Patrick loves his daddy more than he loves me*. But, thinking about it, how couldn't he? Daddy is in the backyard working which means Patrick gets to run around in the yard; Daddy is fixing something in the house, which means Patrick gets access to a whole world of super cool tools that mommy has no idea how to use; Daddy likes to play Rock Band, which means Patrick gets to play Rock Band (please don't tell him his guitar is not on) and most importantly, Daddy is not home all day long. This is important, because when is nap time, daddy isn't there to fight the battle, when is crazy throwing things time, daddy isn't there to fight the battle, and when is hitting the baby bro time, daddy isn't there to fight the battle neither. 

So Patrick loves his dad more than he does mommy. But, Daddy made this possible, too, by being a great dad. I do have to harass him every now and then about spending some quality time with the kids, but I believe this is quite common. The important thing is that he does respond to that harassment, and doesn't complain one bit. I take it as if he just has to be reminded that sometimes we have to put work aside to enjoy the kids. He loves his children as much as I do, and that is all I want for my kids. He is a great example to them and I know Patrick wants to be just like him, because he imitates him on EVERYTHING he does, and I'm not even exaggerating (good thing he quit smoking awhile ago!)

Tim has been on board in all the things I have tried (from therapies to vitamins, to toys and family outings) to help Patrick in his developmental delays. He has even suggested to try a few new things to help Patrick, which have been a great asset and which I will talk more about in a future post. That support is the one that makes this journey easier, and for that, we thank you! 

Oh, and nothing much happened in June to write about, other than Patrick's new gig as a Rock Star. He has this new desire to play the guitar (and every now and then, the drums) and sing songs for us. 

He isn't shy to play the instruments in front of other people

He got a beautiful singer to join the band

It's absolutely cute, and this is one more thing he is imitating daddy on (no, Tim is not an actual Rock Star, unless he is playing Rock Band) so here is a video we made for him on Father's Day.

*UPDATE: After reading this post, Tim said that Patrick doesn't love him more than he loves me. I do have to admit that when Patrick gets scared, is sick or gets a boo boo, I'm the only person that can bring him comfort. So I guess that counts for something. But the other 80% of the time, he prefers his daddy. 

Overcoming Low Muscle Tone: Parents

To close the series on Overcoming Low Muscle Tone, I wanted to write a post about the indispensable role that the primary caregivers of the child play.

I'm not an expert on Low Muscle Tone. I'm not even a therapist, or a special teacher and actually I had never heard of Low Muscle Tone until the day I read the term online, when I was looking for answers to why Patrick wasn't crawling, rolling or pulling up. Being just shy of 4,000 hits on this blog, it makes me so happy to see that most of those hits are from Google searches on low muscle tone, hypotonia blog, oculomotor apraxia, afos for kids and so forth. This means, parents out there are looking for answers to their questions, and looking for ways to help their children, just like I'm. This is the very first step and most important one on helping your children. If the primary caregivers are determined to help the child overcome the obstacles, then he/she will overcome the obstacles.

I realize that in this series I missed out on mentioning so many toys that are specifically designed to help kids with low muscle tone. There are many exercises to do at home that I didn't list, and perhaps some specialists that are there to help hypotonic kids that I have never heard of. But the thing is, I'm writing our experience, I'm here to tell what we have done, and what has worked for us. Patrick's hypotonia wasn't severe, but it was still stopping him from developing at his friends' speed. Every single thing posted here, we did it, and that is why Patrick is now walking and running and jumping. So, you see, it's not about the doctor, or the therapist, or the toy, or the exercise, it is about all the things combined, that you, as parents, will do for your child.

My mother would say that ultimately Patrick's improvements are possible because of all the prayers. And she is probably right. Rather than praying for a miracle that one day Patrick will just wake up and will be capable of doing all the things kids his age do, we actually pray that God gives me and my husband the wisdom to know how to better help Patrick. We pray that we have easy access to the tools (doctors, recreational areas) that will help us help him. We pray for our patience, and our perseverance, and to never let our hope die, that one day, not long from now, Patrick will be able to close that gap of capabilities between him and kids his age.

As much as the Pediatrician loves children, or the special ed loves children, or the therapist loves children, no one loves your children more than you do. So nobody has the desire and love to help your child more than you do. One hour a week of physical therapy won't make the difference. Hypotonia is not a rare disorder, there is a lot of information out there, on websites, books, online groups... you don't need to spend too much time trying to figure out how to help your child. It's all at your fingertips. Reach out to services provided by your county, ask your doctor. Take your child to the playground and other outdoor activities. Host play dates, go to play dates. Make your partner involved. 

But, don't feel bad if you don't work with your child every single day. We have other things to do besides working with our hypotonic child. We have other children too, and a house to take care of, meals to make, and perhaps a job. And we get tired, too. So we need to rest. And we need to go out and have adult conversations with adults outside our jobs. And trust me, taking care of all that helps the hypotonic child as well. Because if you, the primary caregiver are fulfilling your needs and desires, your overall attitude is so positive, energetic and stress-free that therefore your are more able to fulfill your child's needs. Trust me, I know.

Take a break but don't lose sight of goal. That's what I'm trying to say here. Work with your child short, but often periods of time a week. Your consistency will make the difference, you will make the difference. Be your child's best advocate. 

Apraxia Awareness Day

May is "Better Hearing and Speech" month. May 14th is Apraxia Awareness Day (celebrated this year for the first time).

There is a chance that Patrick has Speech Apraxia.

I began to get desperate about Patrick's slow improvement in his speech. His speech therapist has been trying to help us with his behavior issues as well, so not much has been done regarding his speech. The most frustrating thing of all, is to not know exactly what the problem is. Is he stutter? Is he dyslexic? Can someone please give me a name, so I can read about it and know how to better help him? Patrick is still too young to give a specific diagnosis on his verbal delay, but I needed to speed up the process, so I decided to get myself educated in speech delay, by researching information online.  A speech delay website recommended this book, and given the great reviews on amazon, I ordered it in a heart beat. I also came across this video which also had great reviews from parents. Patrick doesn't like watching TV, but, who cared at that point, I was (and still am) ready to try anything that can potentially help him, so I went ahead and ordered it as well. (No, I'm not going to have him try Nutriivida despite the claim that these diet pills help children with Apraxia and Autism)

While waiting for amazon to deliver my orders, I continued reading stuff online the next couple of days, and I came across this website which explained the characteristics of a child with speech apraxia, and the more I read, the more I felt that the website was describing Patrick. Before switching my google search from "speech delay" to "apraxia", I thought I should get a second opinion from the person that knows Patrick as well as I do: his daddy. I shared the link with my husband, without saying anything, and when he finished reading he said "that's Patrick".

I was excited. I had a name to his problem. I also had received the video and book and Patrick liked loved the DVD. For the first time in his life, he sat  to watch something for more than 5 minutes. Go big or go home? He watched the whole 40 minutes of it. We were on track. Except, I was about to discover that this new track could be filled with obstacles: Apraxia isn't an easy thing, as a matter of fact, it's quite a pretty serious disorder.

"Childhood Apraxia of Speech (CAS) causes children to have extreme difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw, and palate that are necessary for the production of proper speech. It is among the most severe of speech and communication problems in children. While the act of learning to speak comes effortlessly to most children, those with apraxia endure an incredible and lengthy struggle. Although not life threatening it is life altering as families are left to cope with the emotional, physical, and financial challenges of having a child diagnosed with CAS. With early intervention and appropriate therapy, most children with CAS will learn to communicate with their very own voices."

I don't want Patrick to have Apraxia. (Heck, I don't want Patrick to have any of the health issues he has, but he does have them, and we have to live with that fact.) I talked to his speech therapist, but she said it may be too early to give him this diagnosis. She believes that while Patrick presents some of the characteristics of verbal apraxia, he is also able to do some other things that children with apraxia are usually not able to do. However, she doesn't want to rule out the possibility given that Patrick has visual apraxia (Oculomotor Apraxia).

The more I learn about verbal apraxia, the more I realize the hurdles that could come, but I must focus on the happy ending, and figure out a way to get there soon. After all, if it's not a happy ending, then it's not the end yet, right? It happened with walking. I did fear he wouldn't walk, but he eventually did, he does, he runs. We have to get him to talk too.While we get to the happy ending, let's work on the story, and let's try to make his story the least difficult possible. Hopefully soon we will learn that Patrick does not have speech apraxia, and just some minor speech disorder or even better, just a speech delay. But that doesn't change the fact that right now, at 30 months of age, he is still not able to put two words together, and 95% of his single words aren't even words but just mere approximations that nobody is able to understand but me and his dad.

This is why I'm writing this today. I'm honoring Apraxia day by giving you an overview about Apraxia, and sharing with you our struggles as parents.  One of the things I fear the most, is my son being bullied, or simply having to hear constantly from other kids "mom, what is wrong with that kid?" while being pointed at. If more people are aware of these disorders, we could help kids overcome the emotional distress that their inability to express themselves like most kids causes them. I invite you to share this post, or this link, so that when you see a 5 year old child that isn't able to talk properly, but that otherwise looks completely "normal" you don't ask yourself "what is wrong with this kid?", and instead, offer a warm smile and treat him like any other child.

Every child deserves a voice!

To the mothers who haven't yet heard "I love you"

I want to celebrate the mothers of children with special needs. After experiencing what is to have a child with developmental delays and a rare disorder (OMA), I have learned to understand better what you endure. I have a unique respect and admiration for all of you, specially the ones that have children with severe health issues, and so have to keep it up even harder. You are all amazing women, and only you have taken motherhood a step further. Truly, love is at its finest every single time you handle each obstacle as an opportunity, with your child's happiness as your only goal. Even though most of us haven't yet heard "I love you," please know they tell you so, every time they smile.

Below, two of my favorite poems dedicated to special moms like you.

To the mothers who haven’t yet heard “I love you,”

To the mothers who do not yet have a name,

To the mothers who know what it is to believe in your child

when it seems like no one else does,

To the mothers who are interpreters,

To the mothers who are their child’s voice,

To the mothers who have had to become the expert,

To the mothers who do not take no for an answer,

To the mothers who stay awake every night worrying about what is to come,

To the mothers who never let their child see them cry for them,

It gets better.

“My doctor told me I would never walk again.  

My mother told me I would.  I believed my mother.”

Wilma Rudolph

*

Did you ever wonder how mothers

of special needs children are chosen?

Some how I visualize God hovering over earth

selecting his instruments for propagation

with great care and deliberation.

He passes a name to an angel and smiles.

 "Give her a special needs child."

The angel is curious.

"Why this one God? She's so happy."

"Exactly" smiles God.

"Could I give a handicapped child

to a mother who does not know laughter?

That would be cruel."

"But has she patience?" Asked the angel.

"I don't want her to have too much patience

or she will drown in a sea of self-pity, and despair.

Once the anger and resentment wear off,

she'll handle it.

Yes, there is a woman

I will bless with a child 'less than perfect. '

She doesn't realize it yet, but she is to be envied.

She will never take for granted a spoken word.

She will never consider a step 'ordinary'.

When her child say's 'Momma' for the first time,

she will be present at a miracle and know it!

I will permit her to see clearly the things I see

-ignorance, cruelty, prejudice -

and allow her to rise above them.

 She will never be alone.

I will be at her side every day of her life

because she is doing My work

as surely as she is here by my side."

"And what about her patron saint?"

asks the angel, his pen poised in midair

God smiles, "a mirror will suffice.""

Erma Bombeck

Thank you for being your child's best advocate. Happy Mother's day!

Overcoming Low Muscle Tone: Professional Help - Therapists

On my previous post, Overcoming Low Muscle Tone: Professional Help - Doctors, I wrote that Patrick's neurologist suggested that he started Early Intervention services to help with his developmental delays.

Of all the things that we have done to help Patrick overcome his low muscle tone (and his developmental delays in general), Early Intervention Services have been the most helpful resource. It's probable that your hypotonic child is already receiving Early Intervention, but in case you are new to this, here is a brief explanation (from their website) of what they do:

The Infant & Toddler Connection of Virginia provides early intervention supports and services to infants and toddlers from birth through age two who are not developing as expected or who have a medical condition that can delay normal development. 

A child with a developmental delay or differences in development is not developing like other children his age. The delay or difference can be in one or more of the following areas:

- Thinking, learning, and playing

- Moving, seeing, and hearing

- Understanding and using sounds, gestures and words
- Taking care of one's self, including eating and dressing
- Developing relationships 

Supports and services focus on helping parents and other caregivers know how to find ways to help the child learn during everyday activities. These supports and services are available for all eligible children and their families regardless of the family's ability to pay. 

Every state provides this service, and if your child needs assistance, you shouldn't have any problem getting it. An initial interview/observation is scheduled which will help them determine if your child is eligible. Also, they will do an informal visit to your house to ensure that your child is provided with a safe environment. Afterwards, you will have a meeting to decide what type of services your child will receive and with what frequency. You are also assigned a coordinator who will oversee the work of the therapists and respond to your concerns.

Once you are all set, the therapist(s) will go to your house for 1 hour, observe your child while playing, and will give you suggestions on what to do to help improve his developmental delays. You are supposed to work on these tasks on a daily basis. Every 6 months you, your coordinator and the therapists will have a meeting to evaluate the progress, create new goals, and determine if a change on the frequency of therapies is needed, and if any additional therapists should join the team.

Below, Patrick's experience with the Infant and Toddler Connection of Virginia:

a) Physical Therapist: Patrick began taking twice a month therapies. Most of the suggestions I have written on this blog are actually ideas that his therapist has given me all along. Patrick is doing so great on his walking and running that therapies have been reduced to only one a month. Also, suggestions from her therapist now focus more on his fine motor skills.

b) Speech Therapist: As I mentioned in the last post, the developmental pediatrician at Children's Hospital suggested that Patrick took speech therapist. The coordinator agreed and Patrick began taking therapies twice a month. Shortly after, Patrick had his 1 year evaluation with the coordinator, who suggested to increase therapies to 3 times a month. Given that she sees Patrick more often than his physical therapist, she has also been helping us with some of Patrick's behavior issues. We are now in the midst of finding out what type of problem is causing Patrick's speech delay, having verbal apraxia as a possibility.

c) Occupational Therapist: Patrick does not take occupational therapies, however, we met with one couple days ago. As I have mentioned briefly in previous posts, Patrick's throwing, screaming and hitting was starting to get out of control. Also, due to his constant mouthing (placing toys in his mouth) and banging of toys, his ability to play with toys, learn and engage with other kids is limited. His body (joints) need pressure/hard input, and so all of this made us believe that Patrick had Sensory Integration Disorder. After a written test I had to do, the occupational therapist scored it, and met with me (and the speech therapist) to give me the results. Patrick appears to have some level of sensory integration disorder in some areas, but the occupational therapist suggested we didn't address his issue as SID, but rather, we should focus in the particular areas that we need to work on and will give us some ideas on what to do to help him. As she said it "Sensory Integration Disorder are big words and you may get lost in it if you see it as a whole picture. Let's just work in the mere areas he needs help, and it will be less overwhelming for you and Patrick". I was very happy with her approach, and I'm looking forward to the report with detailed suggestions she will send me shortly.

All of the therapies that Patrick receives currently are provided by the Infant and Toddler Connection of Virginia, and are provided to us at no cost. Luckily, Patrick's delays aren't severe, so private therapies haven't been required. Patrick won't be able to receive these services after November, when he turns 3, but he will continue to receive tailored services at the Special Education Preschool. It's possible, however, that if Patrick's speech delay has little improvement after he starts preschool, we may add private therapies.