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.

Overcoming Low Muscle Tone: Professional Help - Doctors

This post is part 5 on the series: Overcoming Low Muscle Tone. If you want to read part 4, Playing at home, please click here.

If you have an overall healthy child, the following may seem like a ridiculous long list of specialists to have to see, specially for someone who is only 2 years of age, but when I read stories of other moms that are going through a similar experience, I often seem to fall short on the list of doctors! By having hypotonia, you may think that only physical therapies are necessary, but there are a number of areas that get affected too, for example, nutrition.

I don't want to overwhelm Patrick with too many doctor visits, and this is the main reason why I have put on hold visiting some specialist in the hopes that he will overcome some of the problems as he grows, without needing to see the doctor. But I don't want to wait too long either, because when it comes to developmental delays, the sooner you take action, the greater the improvements in the child.

a) Medical Specialists

• Pediatrician: The pediatrician is for your child, what your primary family physician is for you. He is your "go to" doctor when your child is not feeling well. If you think that something just isn't right in your child, check with his Peditrician. With his expertise he will be able to give a general diagnosis, and if necessary, suggest to see a specialists, he will tell you which one is the most appropriate and give you referrals. Patrick's pediatrician was the one who referred us to the neurologist, and that was the right call.  (To read about how this particular experience went for us, please click here.)

• Neurologist: We originally saw the neurologist because of Patrick's eye issue, and he mentioned that hypotonia could be a consequence of it. The neurologist was the one who told what is what Patrick has and suggested to get him Early Intervention. (If you want to read about our visit to the neurologist and the diagnosis, please check out this post.) We had to perform a CT Scan to find out what the problem was. Perhaps your child has Down Sydrome, or Cerebral Palsy, or something else, so finding out the reason behind, will make it easier for you to treat the core issue, and possibly help better on his low muscle tone. Perhaps your child has none of that, but you still want to find out the cause and may choose to do genetic testing, CT Scans on your child or other tests.

• Neurodevelopmental Pediatrician: It's important that you have a medical specialist overseeing periodically the improvement (or lack thereof) on your child. Patrick's regular pediatrician doesn't treat any of Patrick's specific issues and even though the neurologist was important to get a diagnosis, he isn't doing any follow-ups. This is why we also see a neurodevelopmental pediatrician at Children's Hospital. They evaluate Patrick every 6 months, and are very knowledgeable of his conditions. At the first evaluation, they suggested we added speech therapies, when we were just applying the "wait and see", thinking he was just a late a talker and would start talking soon. Well, 8 months after that visit, Patrick is still doing approximations of single words. They knew this wasn't just a matter of a bit of a delay, but rather an issue that had to be addressed by a professional. Patrick eventually started taking speech therapist and I can only imagine how much further behind he would be if they didn't have suggested that. 

• Nutritionist: At the second visit with the neurodevelopmental pediatrician, the doctor suggested to see a nutritionist, due to Patrick's low weight. All along I have been trying to give him extra food and give him Pediasure because I know he could use more weight, but I didn't think it was necessary to see a nutritionist. He is too skinny, but so was my husband when he was Patrick's age. Plus, he is otherwise very healthy and very active. He was close to the 30 percentile on his last visit with his regular pediatrician, but what the developmental pediatrician noticed was that his percentile kept going down at every visit. Like I said, I don't want to keep adding more and more doctors to Patrick when they aren't necessary, so before calling the nutritionist, I decided to be more aggressive on his feeding schedule, portions and contents, and I added a general vitamin on top of the vitamin D he was already taking. After 6 weeks, we didn't get positive results. The dev ped was right, he needed professional help. I called last week to make an appointment with a nutritionist at Children's Hospital, but of course the soonest they can do is the end of July. Last week I also read that most kids with low muscle tone and developmental delays have nutrition issues, including low weight and constipation, which Patrick has. The article, which you can read here, explains how important is to address their nutrition in order to get positive results in their development. So now I'm banging my head on the wall for not acting sooner. I will make sure to write a post after the visit to the nutritionist takes place.

b) Therapists

• Physical Therapist
• Speech Therapist
• Occupational Therapist

This is already a long post, so I will talk about each therapist in the next post, likely in the next few days.

Please note that Patrick has also seen a pediatric neuro ophtalmologist to check on his Oculomotor Apraxia, but, I didn't think it should be listed, as this is not related to the hypotonia. Low muscle tone is often a "symptom" of a greater problem, so it's likely that you may need to see additional specialists to treat the core problem.

Special Education Preschool

Patrick is eligible!

I just received a call from Fairfax County Public Schools, to let me know that Patrick was found eligible to receive services from the Special Education department.

What this means?

It means that starting September, Patrick will attend Preschool. He will be 2 months short of being 3 years of age, but in the Special Education System, children can start as young as 2 years old. He will attend school with children that have similar developmental delays (about 6-8 children per 2 Special Education Teachers in each class.) We have heard great things about Fairfax schools, specially the ones by us, and, specially, the Special Education Preschool. We started the process about 3 months ago, and we still have one more meeting to find out how many times per week he will be attending, how many hours, and what are the goals, and answers to all my dozen questions.

This is bittersweet for me, for two reasons:

a) This means my Patrick will be gone during the day. I will miss him. Most importantly, he will miss me. :-(
Patrick is with me ALL the time. Yesterday, when the family was hanging out in the living room, Patrick told daddy "mine! mine!" while pointing at me. I was blushing! Patrick thinks knows I belong to him. When he plays with other kids at the park or at the moms meetings, he comes often to check on me, to make sure I'm still around. But I won't be around at school. He will cry, I know it already. At least the few first times. And I will cry at home because my baby is gone. You see how attached we are to each other? So, I know it's actually good he is going to school. He needs to socialize more, and be more independent, and I need to let go. So, it's all good. :-)

b) Patrick is a child with "special needs". :-( He will be attending a Special Education Preschool, not a regular school. Remember my dilemma about Patrick being a child with disabilities? So, knowing that your child has officially the "special needs" label, isn't easy for us. But, at the same time, given his delays, I'm glad he has that label. Let me explain why: From what I was told today, there are children that have serious issues in their physical, emotional and social developments, but those are due to the child's environment (e.g. parents that don't pay them attention, very poor living conditions, not access to proper health care, violence at home...) and if this was the case, then Patrick would fall into a different category. The fact that Patrick is found to be a "special needs" child, reassures us that it has nothing to do with the life we as parents are providing to him, but rather, is the way he was born.

I will write another post after we have said meeting, to explain a bit further what is going on and why is this so important to any child with disadvantages. I just wanted to do a quick note to write about him being eligible. In the meantime, here is a video of my sweet boys playing this morning.