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Cast Your Vote:

    • 1- keep program just the way it is and wait -- Votes: 3
    • 2- transition to new hospital -- Votes: 3
    • 3- switch both kids to speech keep other current therpay -- Votes: 1
I need advice from other SN mom's user banned
27th Jun '12

This might be long. Please bare with me and ask any questions if I omit any info that you find important to help me figure out what to do. I am including lots of information so you can get the big picture.
My oldest now 4.5 started speech therapy at 27 months. At the time he had 7 words in his expressive language skills. His receptive language was a bit delayed so he went to a SN school for toddlers 2x a week where I was very involved volunteering until he turned 3. At 3 he went into the school district for speech (30 min a week) and also private speech (45 minutes a week). as of now, summer vacation from school is upon us, but he still receives speech at the hospital.
My middle son started speech therapy the week of his first birthday and at that time we did a mommy and me class with a special ed teacher and para educator. At 19 months old I switched him over to a private SLP where he could get a 45 minute session once a week and much more specialized care. At the same time he started occupational therapy. It has been 1 year and 2 months since the transition over to the hospital program and he is turning 3 in Sept. At which point he is starting special education preschool, speech therapy and occupational therapy.
Here is where I need help/advice. In 2 weeks my middle son is getting his aug comm device (alternate communication device- computer that will talk for my son) and rather than discharge him, his private SLP is going to keep him on her case load until November 1st and then rotate him out, so she can see other kids. Why? Because he will have a 'voice' and a way to communicate. I'm sorry- but a device is not all my child is capable of. He has a few words. I know the possibility is there. I'm not giving up on my son being a verbal speaker. He is very intelligent.
These are my options. 1) Keep my oldest in speech and baby in physical therapy and middle LO in occupational therapy at current program and work on speech at home with middle LO since I've participated and watched everything for 2 years with him, 3 years total between both kids. Keep in mind middle LO will start receiving speech at school in Sept so at no point will he be without speech therapy. Until his turn comes back around in 3-6 months and then start speech again. OR
2) Get everyone's files sent to another children's hospital and on the wait list, where they will never be transitioned out until they graduate or move up to an older child program.. and forget about the other therapy place that has been wonderful for the past year and a half.
3) Switch both older kids for speech. Keep OT and PT at ped center since they have been awesome.
Or you have a better idea???

Abcdefghijklmnopqrstuvwxy Due September 9 (boy); 1 child; Zimbabwe 42927 posts
27th Jun '12

<blockquote><b>Quoting Angie Mother of Boys:</b>" This might be long. Please bare with me and ask any questions if I omit any info that you find important ... [snip!] ... 3) Switch both older kids for speech. Keep OT and PT at ped center since they have been awesome. Or you have a better idea??? "</blockquote>




With him having some words, and gaining the device, it is very very likely he will start talking while using the device... But it will be good for him to have a break to learn the device and start communicating with it... And work with you at home... It does not in any way mean you are giving up on him, or throwing in the towel at the idea of him using his voice to communicate...



I wouldn't disrupt the other children's therapy because if this and I do understand the frustration....



It won't be long before he is back
On the roster for speech and you can work with him at home as well...

user banned 3 kids; Washington 15083 posts
27th Jun '12
Quoting Jamils_ mommy:" <blockquote><b>Quoting Angie Mother of Boys:</b>" This might be long. Please bare with ... [snip!] ... the frustration.... It won't be long before he is back On the roster for speech and you can work with him at home as well..."


I think it might give me a needed break if you will, to have the time alone with him without the pressure and constant push to use verbal language at speech. But, the flip side is all the research that says very direct speech and muscle training is needed for the production of speech with his diagnosis.
So I'm feeling a really hard pull to get him in at another hospital and leave the other therapies where they are. This is so hard. I can't stop crying. :(

Abcdefghijklmnopqrstuvwxy Due September 9 (boy); 1 child; Zimbabwe 42927 posts
27th Jun '12

<blockquote><b>Quoting Angie Mother of Boys:</b>" I think it might give me a needed break if you will, to have the time alone with him without the pressure ... [snip!] ... pull to get him in at another hospital and leave the other therapies where they are. This is so hard. I can't stop crying. :("</blockquote>




What is his diagnosis?



Jamil only ever had a expressive speech delay as a diagnosis
I am not sure it was accurate, I mean the more an More I read and look at what we did and went through to get him to produce sounds, and how hard it was for him to articulate its insane.. We found a severe tonge tie at 3.5 years old
After all his speech sounds were fluent... How did we not catch it



We honestly made most of our progress at home, and with the iPod touch he finally started to mimic and pick up new words..

user banned 3 kids; Washington 15083 posts
27th Jun '12
Quoting Jamils_ mommy:" <blockquote><b>Quoting Angie Mother of Boys:</b>" I think it might give me a needed ... [snip!] ... it We honestly made most of our progress at home, and with the iPod touch he finally started to mimic and pick up new words.."

For this particular thread it's the Apraxia/Dyspraxia that is affecting his speech. It's a neurological disorder. The brain has trouble communicating what it wants the body to do- to the actual action.
I copied and pasted the following so you can read about it.



Apraxia




Verbal apraxia; Dyspraxia; Speech disorder - apraxia; Childhood apraxia of speech; Apraxia of speech; Acquired apraxia
Last reviewed: July 23, 2010.



Apraxia is a disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked, even though:




  • The request or command is understood

  • They are willing to perform the task

  • The muscles needed to perform the task work properly

  • The task may have already been learned


Causes, incidence, and risk factors




Apraxia is caused by damage to the brain. When apraxia develops in a person who was previously able to perform the tasks or abilities, it is called acquired apraxia.
The most common causes of acquired apraxia are:




  • Brain tumor

  • Condition that causes gradual worsening of the brain and nervous system (neurodegenerative illness)

  • Dementia

  • Stroke

  • Traumatic brain injury


Apraxia may also be seen at birth. Symptoms appear as the child grows and develops. The cause is unknown.
Apraxia of speech is often present along with another speech disorder called aphasia. Depending on the cause of apraxia, a number of other brain or nervous system problems may be present.



Symptoms




A person with apraxia are unable to put together the correct muscle movements. At times, a completely different word or action is used than the one the person intended to speak or make. The person is often aware of the mistake.
Symptoms of apraxia of speech include :




  • Speech sounds and words may be distorted, repeated, or left out. It is difficult to put words together in the correct order.

  • Struggling or groping for the right word.

  • Longer words are more difficult to use, either at all, or from one time or another.

  • Short everyday phrases or sayings (such as "How are you?") can often still be used without a problem.

  • The person often can write better than he or she can speak.


Other forms of apraxia include:




  • Buccofacial or orofacial apraxia: Cannot carry out movements of the face on demand, such as licking the lips, sticking out the tongue, or whistling.

  • Ideational apraxia: Cannnot carry out learned complex tasks in the proper order, such as putting on socks before putting on shoes.

  • Ideomotor apraxia: Cannot voluntarily perform a learned task when given the necessary objects. For instance, if given a screwdriver, the person may try to write with it as if it were a pen.

  • Limb-kinetic apraxia: This condition involves difficulty making precise movements with an arm or leg.


Frustration, profanity, and depression are typical responses in persons with aphasia.



Signs and tests




The following tests may be performed if the cause of the disorder is not known:




  • CT or MRI scans of the brain may help show a tumor, stroke, or other brain injury

  • An electroencephalogram (EEG) may be used to rule out epilepsy as a cause of the apraxia.

  • A spinal tap may be done to check for inflammation or an infection that affects the brain.


Standardized language and intellectual tests should be done if apraxia of speech is suspected. Testing for other learning disabilities may also be needed.



Treatment




Speech and language treatment may include:




  • Repeating sounds over and over in order to teach mouth movements

  • Learning to slow down how the person talks

  • Different techniques to help with communication


Recognition and treatment of depression is important for people with severe speech and language disorders.
Other tips:




  • Maintain a relaxed, calm environment.

  • Take time to show someone with apraxia how to do a task, and allow enough time for them to do so. Do not ask them to repeat the task if they are clearly struggling with it and doing so will increase frustration.

  • Suggest alternative ways to do the same things, for example, try a hook and loop closure instead of laces for shoes.


When speech apraxia is present:




  • Avoid giving complex directions.

  • Use simple phrases to avoid misunderstandings.

  • Speak in a normal tone of voice. Speech apraxia is not a hearing problem.

  • Don't assume that the person understands.

  • Provide communication aids, if possible, depending on the person and condition.


Many people with apraxia are no longer able to be independent and may have trouble performing everyday tasks Ask your health care provider which activities may or may not be safe. Avoid activities that may cause injury, and take the proper safety measures.

user banned Due March 21; 1 child; Colorado 67779 posts
27th Jun '12

I am in nearly the same boat as you. My 3.5 yr old, actually 4 in 2 months, is also very speech delayed & has been in speech therapy for yrs now. he is improving but it is a very slow process still, he only talks in like 2 word sentences & mainly just says yes and no. I don't want my kid on an aug comm device either :? isn't it just so damn hard... I think your best option, from what I understand, is option 1... One on one help w/ you & him is really beneficial too IMO

user banned Due March 21; 1 child; Colorado 67779 posts
27th Jun '12

<blockquote><b>Quoting Angie Mother of Boys:</b>" For this particular thread it's the Apraxia/Dyspraxia that is affecting his speech. It's a neurological ... [snip!] ... provider which activities may or may not be safe. Avoid activities that may cause injury, and take the proper safety measures."</blockquote>




Wow... A lot of that looks familiar to me :shock:

user banned 3 kids; Washington 15083 posts
27th Jun '12
Quoting
user banned Due March 21; 1 child; Colorado 67779 posts
27th Jun '12

<blockquote><b>Quoting Angie Mother of Boys:</b>" It is so hard! I'm sorry you are going through this, too. As for the aug comm device, I am really looking ... [snip!] ... him out for 6 months since he has a way to communicate. If he wasn't getting the device she WOULD keep him on her case load. "</blockquote>




I do find it crap that they said that though... It still sounds like he's delayed to me & doesn't have a big enough vocab to have a reliable way of communication. :? I know I have another yr until seriously considering the device but I really don't want him to have to have it kwim. Some days I just want to cry when I'm around other kids his age & even younger talking up a storm.

user banned 3 kids; Washington 15083 posts
27th Jun '12
Quoting
user banned Due March 21; 1 child; Colorado 67779 posts
27th Jun '12

<blockquote><b>Quoting Angie Mother of Boys:</b>" It's not hard to find therapists not only aware of Apraxia but educated on how to treat it. :x "</blockquote>




It isn't hard ? Or did you mean it is hard

user banned 3 kids; Washington 15083 posts
27th Jun '12
Quoting
user banned Due March 21; 1 child; Colorado 67779 posts
27th Jun '12

<blockquote><b>Quoting Angie Mother of Boys:</b>" Sorry it is hard. :oops:"</blockquote>




Oh I see. Well he has speech therapy tomorrow actually, I am going to bring that up. Thanks :)

user banned 3 kids; Washington 15083 posts
27th Jun '12
Quoting
Mommy of 2 + 1 angel 2 kids; 1 angel baby; Pearl, Mississippi 19327 posts
27th Jun '12

I'm sorry I'm not much help. I'm just learning the way this system works for our SN children.



I am one that doesn't like to start things over so I would probably do option 1 but switching them all sounds like a better option since they have programs that grow with the children.