Isabella wants to raise awareness of speech issues

Hello, everyone, You might have read about our doctors visits to Mary free Bed and that we have appointments on Tuesdays in Grand Rapids after Bella neuro evaluation was done we are officially starting the treatment process and I wanted to share with all of you in hopes it helps others who have speech issues to know you are not alone. 

Bella wanted me to write a blog post to share about the treatment of speech issues and to help others who are going through the process and also to bring awareness about others who do not know what a speech pocessing disorder looks and sounds like.

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Speech and language processing disorders is what I am sharing about as that is one of the treatments Bella is going through and I wanted to share to help others who have children who are also going through speech therapy with their children.

This month is not only back to school for Bella but we also started speech therapy every Tuesday.we will have sessions. that will help Bella with programmatic language and language processing disorders. 

First I wanted to share with you some information on What are Programmatic language and language processing disorders?

Chances are you too are wondering if your child is struggling with this or if other children are struggling with the same issues Bella is struggling with. 

While speech and language therapy generally help phonological and expressive language difficulties (speech), there is less evidence to support its effectiveness in helping receptive language difficulties.  The receptive disorders are where Bella struggles in and that is common among children who have 22q11.2 deletion syndrome. Typically with speech therapy, they can improve and live fully functional independent lives but you need to stay on top of these appointments and therapy and you have to have a treatment plan that is individualized. To help receptive language, you need to exercise listening skills, not speech.

  If you meet Bella she can talk circles around anyone and will tell you stories and talk for hours and miles at a time. You can understand her sounds and hear her very clearly.

With the hypernality issues almost gone she is doing so well you would not know where to start when it comes with Bella but after her neuro evaluation we can see an entire picture of her issues and we know where to begin and have started the process to treatment plans.

I am lucky to have speech, psychology and physical therapy appointments every single Tuesday all on the same day yes they are back to back and even makes Tuesdays very long days but the goals and treatment are worth all of the effort, time and even money that is spent to get these therapy done. 

Treatment goals are to start tackling cognitive listening skills.  This includes auditory processing, working memory, listening accuracy, listening comprehension, attention, sequencing.  These are the foundational skills for receptive and expressive language.

For At-Risk Readers which includes my Bella when she tested at school, she fell in the high-risk category kids with attention issues usually fall under this category and Bella is about a year behind developmentally so I was not shocked to see this is where she was at.

The treatment exercises are to help reduce the symptoms of language processing disorder, helping Bella build phonological awareness for decoding and reading comprehension.

There you have it all of it out in the open in terms of Bella's speech and language issues

. I hope this helps Bella's speech and language treatments at the school level as well because there are medical issues and then there are educational issues.

I am learning in Bella's treatment how this would effects Bella in the school setting one example is social cues so a language group or friendship group would be an excellent way to help Bella with this at school whether or not the school will do this is up to the school.

I will ask and see what can be done at the school level to help with the medical stuff we are dealing with. All of this is for me to accomplish with doctors

I only have 4 hours each night with my kid before she has to go to bed at 8 to get up and go to school the following day.

This language processing issue is not going to go away because you see she looks normal. People often assume and think oh Bella appears fine to let's ignore the struggles she has because she is not with the same severity as other kids with speech and language issues no Bella is unique with how 22q11.2 deletion effects her and she does need the help and support. No longer will I let Bella suffer in science

My hope in this post is that this helps teachers nurses and doctors understand from a parents perspective and from the perspective of someone who also has 22q11.2 deletion who went through speech therapy and didn't get all of the help I needed because I too appeared and looked like the typical normie child like Bella does. I am so thankful we are doing this and I am hoping this post does help Bella and others like Bella. 

Here is a video of what Bella sounds and looks like and how she feels about speech therapy

 

If you or your child are in speech therapy I would love to hear about your experiences in the comments blow.

until next time keep the faith and have fun with treatment programs.