re: Any Mom's out there with their kid having Aphasia?

Quoting myr-a-myr:" Awesome! And it's my pleasure. I know I was glad to find a mom (my hubby's aunt) who went through it before me lol. "

Well here is how the evaluation went... Haley is 3 yrs and 4 month today.

Auditory Comprehension: 1 yr 10 month.
Evaluation: She was given the preschool language scale 3 and showed a pattern of significantly poor comprehension than expression. This is the reverse of the typical patter, and suggests difficulty with attention, focus and processing of info through auditory channel despite intact hearing. She had some long enough sentances, and quite a few vocabulary items, but is missing or confused about grammarical forms such as pronouns.

Expressive: 2 yr 8 month

Haley's speech was generall clear. A typical sentence was "look a picture ducky". She used speech more than gestures and she did point at items or bring them to show her mother or myself. Getting her to look and name was more challenging, as she did wel fore a while and would then walk off abuptly and could not really be redirected back to task.

After reading the findings of the evaluations, I feel lost. I had no clue she was that behind; considering this is my only child.
At least she gave me some recommendations to move forward, with OT, speech therapy, and special eduation preschool.

Quoting BlueJenn:" Well here is how the evaluation went... Haley is 3 yrs and 4 month today. Auditory Comprehension: 1 ... [snip!] ... only child. At least she gave me some recommendations to move forward, with OT, speech therapy, and special eduation preschool."

Well if it can be of any comfort or could give you hope,

When my son was evaluated at 3-4-5 yrs old I was freaking out he was so delayed. I spoke with a speech therapist...well more like ball my eyes out lol. She told me that yes the delay is significant but anything before 6 a delay will appear huge because children progress so quickly at that time. It is critical to do early intervention for sure! It does not make it less important but to remember that as the child grows older, if there is progress, the gap in age cognitive delay will be less significant. Say she gets to the level of a 5 yrs old and she is 7 yrs old. There is still a delay but the gap to fill is much less then say a 5 yrs old with a level of a 2 yrs old. So not to feel overwhelmed and think it's a lost cause.

Am I explaining myself properly? She's still young. Keep working at it. Even if there does not seem to be any progress. With my son we would have a flat line for months, not progress whatsoever then all of a sudden it's as though it clicks and he would show instant significant progress. Then flat line again for a few months etc.

It does seem concerning that her Receptive is more delayed then her Expressive. At the same time though it could be a good thing. If she is using sentences already, it means that she does understand some of it at some point.

She could be having some auditory memory problems. Jason has that. You say 4 words he only remembers the first and last. How we approach this is repeating all the time. Showed him how to ask can you repeat please? A regular child will need it to be repeated say 3 times, a child with auditory memory problems will need to hear it 10. Then next time same situation it's 10 times again because he/she will not remember...after a few times though it does finally stick.

She could be having ADD or ADHD. My son has severe ADD. At the age of 3-4 asking him to concentrate on a task for 5-10 minutes required a HUGE effort from him. The school kept telling me that Jason has ADD, medicate medicate medicate. We tried it, was not for him because it made his symptoms worse. Then my speech therapist and OT said to forget the medication for now. Yes Jason has ADD, we see it now because he has trouble concentrating with the non verbal as well. But lack of attention with verbal for a child that has aphasia/dysphasia has to be somewhat normal. I was given the example of sitting in a class where everything is thought in chinese. EVERYTHING. You can concentrate all you want at trying to understand but after a few minutes, how focused can you really be? However, if they add pictures and show examples as they say the words, it makes it much easier to start learning. That is why visual aid is crucial for kids suffering from this disability. We approach it with sitting next to him and work at keeping him focused. Kind of like exercising a muscle. Ok we've been doing 10 minutes for 2 months now...lets add 5. Then we go to 15 minutes for the next few months. We have to be careful at understanding that we have to push yes, but too much will just make him regress also. He will just shut down because it will be too exhausting. So we really look at his body language and feel what the limit is for now. If 15 for the next few days is just too much, we move back to 10 and try 15 later.

Also many kids with aphasia/dysphasia seem to have a limit as to how much or how long intellectual effort is available to be given. It's not a lack of concentration like ADD/ADHD. It's just a lack of energy and endurance available since learning or concentrating on one thing is 20 times harder for them versus a regular child. That is approached the same was as we approach the ADD. Work at it like a muscle. Keep pushing but don't strain.


Like your LO would abruptly walk away but would do well at first. She probably reached her limit for that time. It seems short, but there was something at first right? And I understand that she was doing well for that short time!   That is wonderful! When Jason started to show that, we say light at the end of the tunnel. There is something there, it's small, but it's there.


So our approach was, Repeat, Use short sentences that are to the point, Use lots and lots of visual support and work on those concentration muscles.

She's still young mama, it is a lot of work and it is scary but believe me when I say that from personal experience, I'm pretty sure it will get better as she grows. She's showing signs that progress is very much possible. Jason had those signs too but until I was explained what they were, I thought he would never be able to progress. The progress takes more time and more work but can happen! I'm here for you mama! You can totally do this with your awesomeness  

Update: So we got a date for the OT evaluation for the 23rd. They said that it pretty much looks like she is qualifed, and that after the evaluation she will start on the 6th for regular appts.  
The school district called me today, and she is set up for an evaluation (i guess) with them for this friday. I was a little discouraged cause the gal was real short with me. Didnt say much just told me to basically come in at 1 pm and they will see her. So I am not really sure what to expect, or what they are gonna do.  
Thankfully Haley's Aunt is home and not out of town on business so she is gonna go with us.  


Like you had said about your son, how he degresses some times. I have started to notice in the past few days some degression. I have noticed others before not as quickly as the past few days have been though. Maybe since you mentioned it, I am more looking and hearing it.. who knows...
Like today, when playing ball with her in the house, she knows only to play with the ball in the hall way. She wanted to tell me to go on the other side, as she has in the past. She pointed to were she wanted me, I told her use your words. Cause she was pushing me. She said turn around. I had to ask her, do you want me on the other side? She said other side mommy.

I dont know how you do it... I see that look in her face, like she knows what she wants to say, but she cant say it. It litterally breaks my heart.  
Yesterday it was Mommy. what do you want? blank stare. Mommy. Yes? blank stare.   it went on for about 2 min before she could remember what she was gonna ask.  

Quoting BlueJenn:" Update: So we got a date for the OT evaluation for the 23rd. They said that it pretty much looks like ... [snip!] ... blank stare. Mommy. Yes? blank stare.   it went on for about 2 min before she could remember what she was gonna ask.  "

Yeah it is heart breaking. After a few seconds when I see that Jason can't express it with words I do that too. I will say what he wants. Then if he nods yes I make him repeat it with words.

It's not their fault and sometimes they need to hear it to remember how to say it. You're doing great! You are one awesome mama!  

Keep me posted on how it goes on friday!

Thanks Momma!!  
Today I got paper work in the mail for her sensory evalution, for the OT in a few weeks. But any how, it kind of opened my eyes more to see that a lot of what she does isn't normal... Like she doesnt really smell. She smells flowers, but she says it smells good from memory. She never says flowers smell good or bad, and when cooking she never says it smells good or bad... Like when she sees steam is the only time when she will say that it smells good or bad. So i'm not sure if she knows the difference between smells. Does this sound familiar?

Another that struck me was sense of humor. She only "play laughs", so like if other people around her are all laughing, she will laugh so she can be in on it. But other than that, I cant even recall her laughing other than when she's not being tickled.
I am just curious if these are somethings that you have seen in your son. And if so has he learned what they are?

Anyways, yes I will def keep you posted on what the school says tomorrow... I am not sure if it's testing or what they are going to do. I hate going into appts and not knowing anything that they are going to do or say; def makes me nervous!!

Quoting BlueJenn:" Thanks Momma!!   Today I got paper work in the mail for her sensory evalution, for the OT in a few weeks. ... [snip!] ... they are going to do. I hate going into appts and not knowing anything that they are going to do or say; def makes me nervous!!"

For the smells, I can't say anything other then he just started mentioning smelling things like if something is burning or an intense smell like that since a few months. He just never smells anything or seems bothered by bad smells.

As for the laughing yes! It is probably due to the fact that she does not understand what is going on around her. With Jason his imaginative play was greatly delayed, and he couldn't understand conversations around him so he did tend to pretend laugh to be part of the crowd. Emily does that too. She is 5 and has autism. Younger Jason had many autistic like behaviors, he still has some. I was told that dysphasia and autism can have very similar behavioral symptoms in young children. Both get mixed up at a young age regularly.

Wow, I had no clue that both would be mixed up at an early age. But now that you mention it, it does kinda make sense.

Ok update from the district. I am frustrated with the tax money we are paying the school district. They sent me paper work to fill out and i sent that paper work as well as the evaluation from the therapist. The lady kept asking me and my daughters aunt the smae type of questions that were on the paper work. I told the gal that i sent the paper work and evaluation paper to them. They called up to the office and found it in her inbox. The person on the phone relayed some of the information to the gal conducting the "interview".
One thing that i noticed was the look on the lady who was conducting the interview when they said that haley is -3 at a pls4... from the therapist report. It did make me feel very worried, but at the same time that she would be approved for developmental preschool.
The down side is that there is no summer school, but on the up side is that it would start in September and be half days Monday through Thursday.
Sounds like we are going to have a full plate, of preschool and therapy. It will be great for her to make friends!!
I know I'm prob gonna cry when she goes to school. Some for joy and tears of fear, for me not knowing whats going on while she is there. But i know that it will be good for her.  

Quoting BlueJenn:" Wow, I had no clue that both would be mixed up at an early age. But now that you mention it, it does ... [snip!] ... for joy and tears of fear, for me not knowing whats going on while she is there. But i know that it will be good for her.  "

Awe, I balled when Jason started school! lol. It will be good for her for sure! The first few months of school was when Jason showed the biggest leap in progress so far   Because he wanted to follow his other classmates so much. It's like the kids helped each other through play etc. I'm really hoping the same happens for your LO. I'm sure she will love it!

I know she will love school!! She "talks" about it. Like when we went to see the school district. I told her we are gonna see a school for you. and when we got there, she was so excited! "Haley's school?" I said maybe hunny, we are gonna see. "Yay school. Lets go!" She is just so eager to learn.  
She loves the book brown bear brown bear what do you see. She knows that the teacher, teaches the kids. You ask her point where the teacher is and where the boys and girls are... She def has her smart in some areas.
I finally saw my hair dresser today... Finally able to afford it after saving up for a yr and half... with my low income... I used to see her every 6 months if not less than that. She is like my therapist, I tell her everything.


Her son was finally diagnosed 2 yrs with autism. She had been going through jumps and leaps since he was 17 months old, and he is now 11. She finally found a psycologist that helped her get him diagnosed.
I feel like I am going through a lot of the same jumps and hoops as you and her.

It just seems like you two have opened my eyes that much more. Cause I wouldnt have known that they were simaliar til you said something. My hair dresser also showed me some books about autism (she has her shop out of her home) and it kind of blew me away, cause at some points i was like totally!!

So, how did you go about getting Jason diagnosed with disphasia? Does he have a strict diet like no glutten or anything?
I am just so in need of answers, cause my kids dad is so oblivious to everything!! He sees her about 15-20 hrs a week. I have her the rest of time. He thinks that she is fine. Even when I told him that she is delayed, and explained to him what the therapists said it seems like it went in one ear out the other... I would say that he is still in the dinial. Yeah for me that ended when i did my research asking questions and especially talking to you. As well as when i got the paper work showing how far behind she was in one area.

In the past day or two, I ask her if she wants the light on or off. She told me "want high mommy". "no hunny, want on... or off..." as i show her with the light switch at least 6 times. "want high" "ok you want the light on?" "high mommy". I left the light on.  

There are just some days that i feel so defeated. Left with no answers, etc. And with her dad and his gf/fiance who are not on board; I feel over welmed a lot of time. Like i have this big weight on my shoulders.

Quoting BlueJenn:" I know she will love school!! She "talks" about it. Like when we went to see the school district. I told ... [snip!] ... her dad and his gf/fiance who are not on board; I feel over welmed a lot of time. Like i have this big weight on my shoulders. "

Awe hun, I'm sending you the biggest bear hug possible! It is hard and it is overwhelming.
Jason got his diagnosis through a speech therapist. First we did some speech therapy, then some Occupational therapy. Then he got evaluated by a neuro pedopsychologist. I'm hoping the translation is proper lol. She is a psychologist for children with delays. She tests the cognitive levels verbaly and non verbaly but not regarding speech, regarding every day things. She then sees if the delay is caused neurologically or it's something else. Because the psychologist confirmed it was likely to be neurological, then the OT and ST had that as a lead for a diagnosis. It took a few years to get the diagnosis for dysphasia. That is given by the ST. Dyspraxia is given by the OT.

My winning team for Jason and Emily: Speech therapy, Occupational Therapy and pedo psychologist. Another huge help is psychoeducation. I know that for my kids it was a HUGE help to get them ready for school.

Be strong mama! You're not alone in this and I'm here for you anytime you need me  

Thank you so much!!   I really appreciate you, Momma!!

Oh wow a few years, too. At least I am on the right track, so that is a start.

My friend suggested a note book and take lots of notes on behaviro etc. So i am gonna do that as well as make copies of all the paper work that i have filled out already cause it seems like i am doing a lot of the same kinds of paper work over and over again.
I am also gonna put some notes in there from family members that notice things too. Cause i know i dont notice everything....

Quoting BlueJenn:" Thank you so much!!   I really appreciate you, Momma!! Oh wow a few years, too. At least I am on the ... [snip!] ... I am also gonna put some notes in there from family members that notice things too. Cause i know i dont notice everything...."

Good idea! When she starts school write down what her teacher notices also.

It took years on our end but I'm thinking it's because of our crap healthcare. Serious crap! He could spend months between "blocks" of treatment without seeing anyone. We can't afford private so all we could do is wait and push and call and push and fight hahahaha. For other Special needs moms I've met on BG, health care in the states seems great for EI.

Yeah I am very thankful her Dad has her his insurance and it is a good one! I dont have insurance through my work, cause i only work pt. Sounds like your countries insurance is a pain to work with.
Oh I didnt even think about the teacher hahaha, that's a good idea!!

Sorry for such a long delay... Everything has been such an over welming experience...
Haley does have sensory intergration... we (her aunt and I) have bought some books online that the school recommended. I cant wait for them to arrive!! One book is about activities, another is a parents guide, and i dont remember what the thrid one she got was...
After doing some reasearch... it could be disphasia or autism... Its so hard to tell at such a young age... haley has gotten to yet another hard spot... where she says "mommy.... um... something..... um... um.. (insert what shes wants)"
I am just hoping that these books have some tips and tricks to help her daily life.

She goes to her second evaluation for develomental preschool on friday... She loves OT, which she just started this week.
She also loves her learning preschool that she started a couple of weeks ago...
She talks about them all them time and she wants to go more.   to me that means she is ready for school *fingers crossed she wont get anxious.

In fall she will start developmental preschool. I am so happy for her, but i'm also scared and worried for her.

She is on a waiting list to see a speech therapist, but she an orientation on tues for another class called "it takes 2 to talk" where she is one room and i am in another, so we both learn to talk to each other and how to expand her speach. Cause the class is taught by a speech therapist...

Everything is over whelming!!

Ok just another update...
She is too advanced for the "It takes two to talk" so the patholagist is going to talk to her OT and her Learning with preschool teacher (speech therapist) and see what other classes she would be able to get into.

The senory intergration is also called sensory processing disorder. Even with all the DR's findings from the therapists her dad is not on board.  
He feels that she is still "normal" and thinks that all that she needs is daycare and being around other children her age, and not therapy.

I'm my eyes, yes she is normal, but she has her little qirks about her. I believe that dr's know best and that the therapy will def help her with every day situations, as well as to calm her SPD down.
He told me yes, I have seen her put her hands to her ears and he has seen her freak out cause of her fear of flies, but still doesnt believe what he reads from her records.

I just feel that it is going to be a long haul... I have one disorder down, but i have many more hurtles to go, single handedly...