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.

Overcoming Low Muscle Tone: Playing at home

This post is fourth on the series "Overcoming Low Muscle Tone". To read the previous post on the series, Gear, please click here.

Setting of the play area:

During Patrick's first year of life, his playing area was our living room. We had this puzzle foam mat in both numbers and shape sets. I liked them because they were thicker than most so it was extra safe when he was learning to sit on his own and would occasionally fall to the sides.

By the time he was a little over one year old, we had our basement fully finished, which included a big playing area for Patrick. By then he was scooting around (not crawling, let alone walking!) so I bought these gates on Craigslist to make sure he wouldn't scoot to other areas in the basement that were not safe for him. Well, it turned out that was a bad idea.

His playing area looked like a gated area with tons of toys on the floor. His physical therapist then pointed out that I was better off securing the particular places I didn't want him to get to, and open his space so that he would be more motivated to move. So I put away the gates (a few of them went to surround the TV stuff) and I bought baby gates to block the stairs and the hall to the bathroom. With this changes, he had a more open space to move around, but that wasn't enough. I had to move all the toys from the floor and place them on a table so that Patrick would make the effort to stand.

A couple months later he had mastered standing and going back to the floor. The next step was to make him to give steps. That's when his therapist suggested to change the layout of the playing area, and add a few more "tables" close to each other, each with toys on top, so that Patrick would move from one "table" to the other one. I can't find any pictures of how it used to look back then, but if I come across one later, I will update this post with said pictures. In the meantime, I'm posting a picture I took just for this post. Below you can see the "table" which is nothing but one of the plastic shelves I stole from my husband's shed.

These shelves are very sturdy so I never worried about falling over Patrick, yet they are light enough for me to move around easily. They provide plenty of surface to place many toys, and the height is just perfect for toddlers 1-2 years old (Patrick is 29 months on that photo.) Best part is, I didn't have to pay for them! And even if I had to buy them, they can be stacked later to use for what they are meant: Shelves!

You have to keep children entertained and encouraged to crawl, stand up, and later walk to reach things of their interest. Putting some toys away, and bringing new ones every month or two is a great idea. I'm not saying you have to buy toys every month, but, kids get toys constantly and not only from parents, (think Christmas time, birthdays, when the grandparents are around...) so don't give him all the toys at once, rather, give him a few and put away the rest. In a month or so, you can put away the ones he has mastered playing with, keep his favorite ones, and bring in a few more from the closet. Once you have ran out of new toys, bring back some old ones that are still age appropriate. To get some ideas on what toys are good for your child, you can read this post.

It's important that you change the layout of the playing space in a way that meets your child's needs. As children grow, they are able to do more things, so you have to keep challenging them. Is he sitting up? Then is time to work on making him crawl. Is he crawling? Time to work on making him stand. Is he standing? Then is time to make him walk. Is he walking? Provide plenty space for him to run. It doesn't matter how big or small your house is, you can always find a way to re-organize your furniture so that your child has the appropriate space to fulfill his needs.

Overcoming Low Muscle Tone: Gear

This post is third in the series Overcoming Low Muscle Tone. To read the previous post in the series,  "Toys", please click here. To read the first post, in the series, "Activities", please click here.

GEAR:

a) Ankle/Foot Orthotics (AFOs)

One thing that helped Patrick to stand and walk were his braces. I was told by the Physical Therapist that Patrick needed ankle support, because his feet pronate quite significantly. She said this was common in low muscle tone children, and recommended me to take him to Hanger Prosthetics and Orthotics, to get his measurements. When I called to make the appointment, I was told that a prescription by his Pediatrician was needed beforehand.

That was because they don't necessarily diagnose, rather they just take measurements and order the product. Their expertise helps them decide which type of AFO will be best for your child. The price you pay for the braces includes the appointments needed (measurements, pick-up and any follow-ups) so all these office visits are free of charge. The person who sees Patrick there told us that after using the braces for a little while, we would start seeing significant improvement in Patrick, and he would be walking in no time. He was right!

They suggested that Patrick used the SureStep brand, and while all the information is on the website, let me tell you our personal experience. I'm happy with the product. Patrick didn't mind using them at all, and they seem comfortable. Definitely provided the support he was needing. For some reason I thought the braces would help to correct the problem, but later I was told that mostly they provide support (his body is definitely more stable when he is wearing them.) I think my only complaint is that the straps on his second pair ripped... for something that's billed so high to our insurance (2k+) you would think the straps would be made of a better material.

The first pair of AFOs lasted about 6 months until he outgrew them. He is now on his second pair since the beginning of February. He had to wear the first pair almost all the time, but he isn't required to wear it as much now. I was under the impression that he would need to use the braces for a number of years, but surprisingly we have been told that this may be his last pair. As his muscles get stronger, his ankles should get better, but the problem won't disappear completely. It isn't so bad, considering that there are many people, including athletes that have pronation but are able to perform physical activity just fine.

b) Shorts (Hip Helpers)

One thing that got Patrick started on the crawling were this shorts. They were suggested to me by his physical therapist. This shorts help kids force kids to crawl, or at least, prevent them from scooting, which was Patrick's favorite way to move around, as you could see in the video I showed on the first post on the series.

On the Hip Helpers website you will find that the shorts are also a good aid for children that like to sit with their legs wide open or in W position. Patrick used them briefly, but I think it was worth buying them... he really couldn't scoot the way he wanted, so he had to figure out other ways! It's too bad I actually don't have pictures/videos of him wearing them so you could see, and right now they are too small for him. I hope you can get a good enough idea on what they are like on their website!

c) Chewy Tubes

Also, per suggestion of Patrick's therapist, we bought him a chewy tube, more specifically, a "P" chewy tube. That's the website that was suggested to us, but I believe I found it cheaper (or at least with free shipping!) on Amazon, so you can check there too.

Chewy tubes are great alternatives for little ones who need to practice their biting and chewing skills. Patrick had low muscle tone in his mouth -it was difficult for him to chew food that wasn't soft. Also, he liked (still does to some extent) putting everything in his mouth, more so than the reasonable stage that every baby goes through when exploring new surfaces. The chewy tube is hard, and has some scent/flavor that makes it more attractive to the child, giving the sensory input needed to aid in the mouthing.

I have to say, though, Patrick wasn't a fan of the chewy tube. His jaw eventually got stronger, mostly by the fact that we kept introducing progressively food that wasn't too soft, and by the fact that he likes mouthing so much to the point that anything would go to his mouth, including blocks and other hard things. If you do try it, I hope you get better luck with this product!