We had an annual IFSP for Isabella just recently. Right before the meeting, I found ,yself reviewing the IFSP from a year ago and the one done 6 months ago. For both IFSPs no goals were met and her developmental level at 9 months was that of a 0 to 3 month old. I do feel that Isabella has made great progress developmentally, however most of the progress she makes are the tiny steps that leads to the major goals that the IFSP team has developed. While reviewing, I felt that none of her goals were met and my perception is that her developmental level at 14 months was that of a 4 month old.
At the IFSP meeting, all the service providers were there. We briefly discussed birth and medical history and the type and frequency of services that she receives. Then we proceeded to discussing what is current in terms of Isabella’s development.
• Vision is within normal limits as per last vision check up.
• Suspected hearing loss on both ears. With the right ear being on the moderate to severe range and the left at mild to moderate. Although this results are inconsistent with a sedated ABR done April 2010, where the results indicated the she has normal hearing in both ears.
• Cognitive skills are at the 3 to 6 month range. She uses her hands to explore her mouth, plays peek a boo, and her interest on toys that make sounds are emerging.
• Language skills are at a 3 to 5 month range. She shows interest in music and sounds. She also laughs when we play with her. She coos using “Mmmm” sounds.
• Social Skills are at the 3 to 5 month range. She shows interest in people and likes to watch them. She likes to be in constant sight and hearing of an adult.
• Gross motor skills appear to be at the 5 to 6 month range. She rolls both sides, hold her head up, and with assistance can support herself sitting with extended hands.
• Fine Motor skills are at the 3 to 6 month range. She can track objects, grasp toys when placed on her palm, put her hands and fingers to or in her mouth, and clasp her hands together.
• Self Help skills are at the 3 to 6 month range. Her cleft palate has been repaired and is being seen by a feeding OT. She is tube fed and takes in semi solids by mouth. She licks her fingers and will lick a toy when placed near her mouth.
She did meet 1/3 goals benchmarks that the team has developed (attention to a variety of stimulation, After the report, I felt that our estimation of Isabella’s skills were in the range, most likely the average level of the skills noted above. Old un-met goals (crawl, sit without support, grasp/pick up toys or small objects, and transferring objects from one hand to the other) were continued, and new goals were developed (play with toys, react to music by cooing, babble, pivot her body in prone, sit momentarily leaning on hands, and transfer objects from one hand to the other) .
We left the meeting feeling good that our daughter made progress. And I actually cried because she is moving forward, slow it maybe be, at least she’s moving forward.
However, when I found myself reading the report, I found that not only did they write where Isay is at developmentally, they also wrote in percentages how delayed she is… 79% delay. 79 out of 100.
I’m aware of the reality of it… and I’m still happy with what progress she’s made… but it hurt seeing that difference.
I gotta keep looking at the have's and focus on the positives.
To read about Isabella's development last month, click here
Showing posts with label education and services. Show all posts
Showing posts with label education and services. Show all posts
Tuesday, March 01, 2011
Wednesday, March 03, 2010
Sitting On the Parent's Chair
I'm officially on the receiving end for special education services.
Today we had our very first Individualized family Service Plan Meeting as my daughter was determined eligible to receive services via the Early Start program of the regional center in coordination with the special education department of the county office of education.
The day before I had to fill out forms to get my daughter placed for the early intervention services, your usual start up process... i had a melt down filling out the forms. After all, it was different this time.... i had to fill out a form as a parent rather than the case carrier/special education teacher. I almost didn't finish filling them out.... but i had to and eventually i would have to get used to it.
It was weird seeing my name on the parent line on the meeting notice form when usually i would find my name at the bottom as the case carrier.
It was quite odd to meet people who are colleagues having to take in the role of service providers for us, the parents.
When the psychologist/administrator designee asked me about my daughter, my initial thought reaction was "Didn't you read/review the files prior to this meeting?"... most likely this was due to the fact that i already am tired giving a litany of the complications that my daughter has. But i did it anyways. I almost choked on tears, but I was able to hold it up pretty nicely.
We were read our rights, blah blah blah we know that already as we talk about it with the parents we've worked with. We were handed a book of resources in our area, the same handbook that was in a corner in my husband's classroom that he would pull out to provide resources with the parents he works with. We heard the detailed reports and results of the assessments that they have done with Isabella, and goals within the year were discussed. Same process and meeting agenda that we are already familiar with when we facilitate IEP meetings.
And although the purpose of all this is to have a plan of action to help my daughter reach her fullest potential... somewhere deep inside I felt helpless, clueless, and weak. Although i may have to say that i was able to fake it really well.
Advocating for my very own flesh and blood feels very different as i still feel crippled by the emotions that come with the reality of my situation.
It feels a little weird having to be on this side of the table. It might take some getting used to.
Today we had our very first Individualized family Service Plan Meeting as my daughter was determined eligible to receive services via the Early Start program of the regional center in coordination with the special education department of the county office of education.
The day before I had to fill out forms to get my daughter placed for the early intervention services, your usual start up process... i had a melt down filling out the forms. After all, it was different this time.... i had to fill out a form as a parent rather than the case carrier/special education teacher. I almost didn't finish filling them out.... but i had to and eventually i would have to get used to it.
It was weird seeing my name on the parent line on the meeting notice form when usually i would find my name at the bottom as the case carrier.
It was quite odd to meet people who are colleagues having to take in the role of service providers for us, the parents.
When the psychologist/administrator designee asked me about my daughter, my initial thought reaction was "Didn't you read/review the files prior to this meeting?"... most likely this was due to the fact that i already am tired giving a litany of the complications that my daughter has. But i did it anyways. I almost choked on tears, but I was able to hold it up pretty nicely.
We were read our rights, blah blah blah we know that already as we talk about it with the parents we've worked with. We were handed a book of resources in our area, the same handbook that was in a corner in my husband's classroom that he would pull out to provide resources with the parents he works with. We heard the detailed reports and results of the assessments that they have done with Isabella, and goals within the year were discussed. Same process and meeting agenda that we are already familiar with when we facilitate IEP meetings.
And although the purpose of all this is to have a plan of action to help my daughter reach her fullest potential... somewhere deep inside I felt helpless, clueless, and weak. Although i may have to say that i was able to fake it really well.
Advocating for my very own flesh and blood feels very different as i still feel crippled by the emotions that come with the reality of my situation.
It feels a little weird having to be on this side of the table. It might take some getting used to.
Sunday, February 21, 2010
New Changes
The infant specialist and the OT came to see my Isabella during the first week of February. At that time they tried to asses her. They have this checklist that lists all the skills that infants are supposed to have at a certain age. I wasn’t aware that there is such a checklist that existed until then. When they were assessing her and asking us all these questions I did see the OT and infant specialist look at each other with that knowing look. I’ve seen that look before and I have probably given that same look too. They whispered to each other and marked something on the list. At that time, all I was thinking was, “What?” What did you guys not find that my daughter was supposed to have during this period?”. I mean, just tell me already, right?
The OT and infant specialist didn’t finish their assessments and so we scheduled a follow up 2 weeks after. I asked them what their impressions were, so far, right before they were about to leave and their reply was we will meet with you when we have completed our assessments and have completed our reports and we will discuss it at an IFSP meeting. So I guess we wait what the specialists think. Which is hard because I already have a lot of things that I was worrying about.
Some of the questions that they asked were…
Does your daughter have eye contact? Our reply was No.
Does your daughter visually track objects? Our reply was No.
Does your daughter grasp on objects? Our answer, again, was No.
So, reviewing these questions in my head worried me all the more. It gave me the impression that my daughter does not have skills. That she will grow up so severely delayed that she will just be there… not looking, no response…. nothing. And, of course, as a mother, this pains me.
In the two weeks that followed, my husband and I worked double time on checking if my daughter has eye contact, tracking, and gripping skills. We tried to build her up on those skills. We tried really really hard.
When they came back two weeks after, the infant specialist and OT noted skills that my daughter has gained. She was already able to make eye contact, track objects, roll from side to back, bring her hands together, grasp objects for a short period of time, have better head control, can move her head from side to side, tries briefly to pull herself up, and my husband and I already suspect that she is starting to demonstrate a social smile.
This is indeed progress!
With my son, I did download a copy of developmental milestones from the internet of what to expect for each period/month. I was not worried that he was going to attain them on time, nor did it cross my mind that I need to assist him to achieve them. After all, he was “normal”.
I asked the specialists if I can possibly have a copy of that checklist that they were using. They obliged. The difference between this checklist and the checklist that I downloaded from the internet for my son is that it contains the developmental milestones for each period/month, and it also has the tiny skills that lead to the major ones. So, lets say the skill is rolling, the tiny baby skills that lead to this big skill include rolling from side to back, rolling from back to side, lifting the feet to try and roll from side to back, etc. I never paid attention to these tiny steps before, I guess I didn’t really have to.
You see lately, I would catch myself forgetting that my daughter has special needs. And whenever I do, I would ask myself if that was me
being in denial, or if it is me seeing things beyond the syndrome. I’m not quite sure. All I know is that I am scared going back to the “denial” phase because I already feel that I am moving forward. And that of course I can’t really keep looking at Isabella and keep on thinking “syndrome”, and “special” all the time. She needs to be given at least some credit that the time will come that she will show me what she is made of. So if this is what denial is like, then I guess, it’s a better place. Is this denial? Being realistic? Being more focused? I really don’t know for sure.
So, what have I learned from the last two weeks? I learned, 2 new things…
1) That I know there will be delays in Isabella’s development, I am viewing this possibility realistically, but this does not stop me from helping her work towards the big skills through helping her with the tiny baby steps.
2) That I should not worry about what’s going to happen to Isabella in the next 5, 10 years when I can focus on the NOW and help her through to attain the little skills on her own time and pace.
I was so happy that Isabella showed off what she has.
I’m a proud mama.
The OT and infant specialist didn’t finish their assessments and so we scheduled a follow up 2 weeks after. I asked them what their impressions were, so far, right before they were about to leave and their reply was we will meet with you when we have completed our assessments and have completed our reports and we will discuss it at an IFSP meeting. So I guess we wait what the specialists think. Which is hard because I already have a lot of things that I was worrying about.
Some of the questions that they asked were…
Does your daughter have eye contact? Our reply was No.
Does your daughter visually track objects? Our reply was No.
Does your daughter grasp on objects? Our answer, again, was No.
So, reviewing these questions in my head worried me all the more. It gave me the impression that my daughter does not have skills. That she will grow up so severely delayed that she will just be there… not looking, no response…. nothing. And, of course, as a mother, this pains me.
In the two weeks that followed, my husband and I worked double time on checking if my daughter has eye contact, tracking, and gripping skills. We tried to build her up on those skills. We tried really really hard.
When they came back two weeks after, the infant specialist and OT noted skills that my daughter has gained. She was already able to make eye contact, track objects, roll from side to back, bring her hands together, grasp objects for a short period of time, have better head control, can move her head from side to side, tries briefly to pull herself up, and my husband and I already suspect that she is starting to demonstrate a social smile.
This is indeed progress!
With my son, I did download a copy of developmental milestones from the internet of what to expect for each period/month. I was not worried that he was going to attain them on time, nor did it cross my mind that I need to assist him to achieve them. After all, he was “normal”.
I asked the specialists if I can possibly have a copy of that checklist that they were using. They obliged. The difference between this checklist and the checklist that I downloaded from the internet for my son is that it contains the developmental milestones for each period/month, and it also has the tiny skills that lead to the major ones. So, lets say the skill is rolling, the tiny baby skills that lead to this big skill include rolling from side to back, rolling from back to side, lifting the feet to try and roll from side to back, etc. I never paid attention to these tiny steps before, I guess I didn’t really have to.
You see lately, I would catch myself forgetting that my daughter has special needs. And whenever I do, I would ask myself if that was me
being in denial, or if it is me seeing things beyond the syndrome. I’m not quite sure. All I know is that I am scared going back to the “denial” phase because I already feel that I am moving forward. And that of course I can’t really keep looking at Isabella and keep on thinking “syndrome”, and “special” all the time. She needs to be given at least some credit that the time will come that she will show me what she is made of. So if this is what denial is like, then I guess, it’s a better place. Is this denial? Being realistic? Being more focused? I really don’t know for sure.
So, what have I learned from the last two weeks? I learned, 2 new things…
1) That I know there will be delays in Isabella’s development, I am viewing this possibility realistically, but this does not stop me from helping her work towards the big skills through helping her with the tiny baby steps.
2) That I should not worry about what’s going to happen to Isabella in the next 5, 10 years when I can focus on the NOW and help her through to attain the little skills on her own time and pace.
I was so happy that Isabella showed off what she has.
I’m a proud mama.
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