Articulation Problem- Jessica Lo

a. How does it feel to be the parent of your child?


My son, Joey 7 yrs. old, has articulation problems.  He is a lovely child.  Joey is very obedient, shy, and does not like to talk to much.  However, he is a very smart child.  He loves creating buildings out of his building blocks and can work on several activities for hours.   He is a great independent worker.  His speech is not that bad, he is very understandable, but has a little trouble with his "r"s.  He seems to be pronouncing it with a bit of a "w" sound.


It breaks my heart that he is ashamed of his speech, that's why he does not like to talk.  He is what you can say TOO quite.  Many times when he comes home from school or if we just want to know how his day was, he just gives us a one-to-four word answer.  Its frustrating sometimes because I want to communicate with my child.  I understand that we can also communicate through our actions, but I want him to express to me how he feels.  I don't want him to lack self-confidence because he is such a great boy, with such a lovable personality.  I know this is not as bad as some other child's disability and so I am very appreciative.  I also am hopeful and know that after some speech therapy, he'll be just fine and through this he'll be more confident.


b. How is your child developmentally the same or different from other children at the various ages?


My child is the same as every other child in the classroom.  The only difference is his speech and even then, it isn't even that bad.  Most students does not even know that he has an articulation problem, but its enough to me that Joey knows.  Anyways, like I mentioned earlier, because of this articulation problem, he is very shy.  He doesn't volunteer in class too often, because he thinks that people might notice his speech.   I'm just afraid that he won't get the most out of his classes because he doesn't speak up and participate.  How will the teacher know how he does orally or even academically in general?  I'm not saying that my child cheats, but what if everything he is writing down for test were from someone else's paper, then we would never know how he is doing in class. Those are just one of my concerns.  Overall, my Joey is the same as everyone else.

c. What profession/agencies do you deal with? What services are available to you and your child?

There are endless amount of resources available to Joey. Some outside resources are Kidshealth from Nemours, Speechways, and so much more.  The cost for these treatments are subjective, most depends on what the child needs.  It also depends on what types of services and at home accommodations are needed.  Prices for private speech and language therapy depend upon the type of services offered.  There is no set price because it depends on the situation of the child. For Joey it is inexpensive, he doesn’t need to have a private speech therapist because his school provides him with one.  He visits the speech therapist at his school once a week.

d. How did you find out about the above services?


Many resources can be found online :


This one is good just to find a speech therapist

http://www.elperinaslp.com/index.php/find-speech-therapist/find-speech-therapist-in-the-usa.html


This one is great if you wanted to do some home therapy sessions.  There are actually a lot of online, do it yourself home speech therapy, so its very inexpensive

http://www.speechtx.com/


My child's school really provided most of the services my child is receiving and they have all been extremely helpful.


e. What financial burden, if any, are you experiencing?

I am not experiencing any financial burden. I am very fortunate that my child is taken care of by public funding.  Most families obtain services at no cost. Of those who do pay something, more than half pay between $100 and $500 a month; overall, some pay as little as $1 and others pay in excess of $2,000. The majority of people receiving therapy, receive it at no cost most of it is paid via a publicly funded program.

http://www.iancommunity.org/cs/ian_treatment_reports/speech_and_language_therapy


f. What other information do you want to share?


I love my child.  I hope that he will build self confidence and not shy away from everything.  I want him to make friends and thrive.  I know that he is a smart boy and that he just needs to believe in himself, he needs to not think he has any problems of his own.  I know once his speech therapy is over and he is "normal", he will be happier, even though there is nothing wrong with him. I am just very fortunate to have such a wonderful boy with a very minor problem-its really not a problem at all, I like the way he says his "r"s.




Glogster: http://jessicaloo.edu.glogster.com/articulation-problem/

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Down Syndrome by Bethany Spielberg Block 21

As a parent of a child with Down syndrome I am often asked how this condition has affected our family.  I tell them that having a child with Down syndrome is not much different than having any other child (a).  We spend our days drawing, reading, and laughing together, as Jayme’s interests are similar to other infants his age.  Other days are challenging, speckled with arguments and high-pitched hissy fits as he defies our limits.  But overall, he grows up learning about the world and his place in it similarly to any other typical 3 year old. 

As a family we are able to celebrate many of the same milestones that other children reach as they develop, however Jayme arrives there at a delayed rate when compared to his normal peers (b).  Jayme sat on his own at eight months and crawled at fifteen, setting him 6 months behind his same-aged friends.  We welcomed his first step with balloons and cupcakes at the age of 23 months and immediately began “childproofing” the house.  While these delays can be frustrating, it has taught us to appreciate his accomplishments and admire his persistent hard work.  

Jayme’s medical conditions have awarded us close relationships with much of the hospital staff.  We have learned to not take seemingly harmless coughs lightly, and to be over cautious when it comes to Jayme’s health because with his compromised immune system we cannot afford to assume that throw up or perpetual headaches are only temporary. 

In the beginning we spent a lot of time researching Down syndrome as thoroughly as possible.  The initial diagnosis came as a terrifying shock because all I knew about Down syndrome was the negative stereotype that plagues our culture.  The best way to understand and manage Jayme’s disability was seeking information and advice.  My husband and I gathered information from a myriad of sources including professionals, other parents, adults with Down syndrome, articles, and websites.   We utilized http://www.familiesexploringdownsyndrome.org/services.html to locate parent-to-parent peer contacts. These relationships offered understanding, support, and encouragement while we raised Jayme (c). Many hospitals have a Down syndrome center that employs doctors who are knowledgeable about the condition and have current advice and information for parents. I often visited http://www.downsed.org/en/gb/families/ to get information about conventions and workshops focusing on Down syndrome.  At http://www.downs-syndrome.org.uk/information/family-support.html I learned about Early Support (d).  Early Support is a government initiative to coordinate and improve services for disabled children.  It produces a plethora of resources for parents.  Every city is required to provide services for children “in need” (Down syndrome qualifies).  Instead of receiving services from the city, we opted to receive a direct payment in order to pay for support we arranged independently. I took my entitled breaks each afternoon when I dropped Jayme off at a specialized daycare.   I contacted the school to learn about the special education they offer children with disabilities. 

Although the government funds helped offset some of the costs of assistance, the daycare and routine doctor visits became costly over the years (e).  Despite the financial setbacks I must reiterate how lucky I am to be Jayme’s mother.  Before Jayme was born I would have not asked for this path, and while I did not always view Jayme in such a positive light, I have come to appreciate how much I have loved every step of this journey (f).  In the beginning I considered Jayme to be defective, I perceived him as a burden and an unlucky twist of fate.  However, Jayme quickly showed me that it was I who was flawed.  His endless love and genuine zest for life taught me to appreciate the important things in life.  His determination made me burst with pride at every accomplishment, his curiosity inspired me to always be hopeful and optimistic about tomorrow, and his pure love made me feel like the luckiest mom in the world to be able to hug him each and every day.     

Glogster Account :

http://bethanys613.glogster.com/bethany-spielbergs-glog-on-down-syndrome-block-21/

 

Fragile X Syndrome by: Samantha Wren

My son, Jessie, has Fragile X Syndrome and sometimes it makes me feel guilty because I am the carrier and the reason he has this syndrome.  There is really no way I could have known this would happen but Jessie does not deserve this, he deserves to be just like all the other kids. 

a. How does it feel to be the parent of your child?

Having Jessie is wonderful but sometimes I feel overwhelmed.  There are so many doctors’ visits and medications it is hard to keep track.  Jessie is not as severe as other children with the syndrome but it is still hard.  Having Jessie is a lot of work but he is still a joy to have. 

b. How is your child developmentally the same or different from other children at the various ages?

When Jessie was younger he had many gastrointestinal problems and would throw up all the time.  It was hard for him to keep food down.  We were worried about him not keeping food down but he was a baby babies throw up.  It was not until he was a toddler that we knew something was wrong.  As a toddler Jessie had developmental delays, such as when he started walking, and language delays.  We have two kids older than Jessie so we had an idea of where he should be developmentally and he was quickly falling behind.  He was also very shy, even with people he had known since birth.  That was when we discovered he had Fragile X Syndrome and had to start his medications.  When he got to preschool age he needed sensorimotor integration therapy, toilet training, and the seizures started.  Now he is in third grade he has to go to speech, language, and occupational therapy and he has attention problems and hyperactivity.  He is also behind the other students in his class academically because of his slight mental retardation.  He is able to learn and function in a normal classroom but it is difficult at times.

c. What professionals/agencies do you deal with?  What services are available to you and your child?

I deal with a lot of doctors and therapists.  The doctors are for the seizures and other medications needed for him.  They also need to watch out for other symptoms that may develop, such as tremors and aggressive behavior.  The therapists are to help with his developmental delays, in hopes he can catch up to other kids his age.  My son is also in IEP and needs an aide in the classroom at certain times.

d. How did you find out about the above services?

The therapists I learned about through my son’s doctor.  Many of the services available to Jessie at school I have learned through the school and the district.  Many of the services I use have been found through The Fragile X Foundation.  The Foundation has been a great resource when I have questions or problems.  They have even provided some great resources for my son’s teachers.  Visit The Fragile X Foundation online at

http://www.fragilex.org/html/home.shtml for more information.  

e. What financial burden, if any, are you experiencing?

Lucky for us once our insurance found out about Jessie’s syndrome they did not drop us, but it has still been tough.  There are multiple doctor and therapist visits where we have to pay co-pay every time.  Then there are all the medications we have to buy for him.  The insurance covers most of the cost of the medications but not all.  Even though it is only a little money every time he needs something it really starts to add up.  We are not struggling too much but there are many times we have to forego family vacations or new things for the other kids.  Sometimes it can be difficult but we are surviving.

f. What other information do you want to share?

Though it may be difficult to have a kid with Fragile X Syndrome there is a lot of help out there.  The Fragile X Foundation provides amazing resources and help with anything I may need.  There is so much support for Jessie and my family I never feel alone or lost.  If I have any questions there is always someone to ask and someone to help.  It is hard but the community is very supportive.

Fragile X Glogster: http://samiam20.edu.glogster.com/fragile-x-syndrome/      

Directions -

Compose a blog posting that addresses the questions below. This posting should answer from the heart of a parent, as if you were being interviewed. 

a. How does it feel to be the parent of your child?

b. How is your child developmentally the same or different from other children at the various ages?

c. What professionals/agencies do you deal with?  What services are available to you and your child?

d. How did you find out about the above services?

e. What financial burden, if any, are you experiencing?

f. What other information do you want to share?

Please be sure to type in the questions as well as the responses (Q and A)

* Be sure to include your name
* You will also include the link to your glogster.