This morning we attended the transitional meeting, the first step in transferring the source of Finn’s services from Regional Center to the school district, and putting together an IEP (Individualized Educational Plan) for him. Present were: me, Michael, Finn, our service coordinator from Regional Center, a school psychologist, a school psychologist intern, a SLP (speech/language pathologist), and a special ed teacher. We were outnumbered.
I’ve been dreading this whole process for a very long time. The truth is, ever since we dropped early intervention services for Finn back in November, I have savored having him all to ourselves – absent has been that feeling that third parties who don’t even know him or love him like we do claim some part of him, or some right over him, or some “we know best” over him – and just letting him be him, accepting and loving exactly who he is without a lot of angst over what he should or could be. He has thrived on the love and inclusion and exposure to experiences that he gets just by being in our family, and he has continued to make forward strides in all developmental areas – slowly, yes, but forward all the same. So I knew that the transition process would burst that comfortable bubble.
All the same, I wanted very badly to go in to today’s meeting with a cool head and an open mind. Yes, I’ve been leaning against sending Finn to preschool anytime soon – especially developmental preschool – for a number of reasons, but I was determined to hear them out and see what they had to offer/recommend before making any decisions. Throughout Early Intervention, I never felt that we and “they” (Regional Center, therapists, etc.) were truly on the same team, and I really wanted to begin our relationship with the school district with a feeling of solidarity, everyone seeing Finn as a unique individual and making his best interests priority.
Unfortunately, we didn’t get off on very positive footing this morning. We were under the impression that this was going to be a “Transitional Meeting,” where we would be informed about the process of transitioning Finn to the school district, informed about assessments they would recommend – in other words, an informational meeting. Instead, we got there and were faced by a table full of people who introduced themselves, put a consent form in front of us with boxes already checked indicating what assessments they would be doing, clearly expecting us to just sign it so they could begin the assessments right there on the spot. So right out the gate, there were adversarial vibes.
Out of the following assessments they wanted/expected to do . . .
ACADEMIC/PRE-ACADEMIC ACHIEVEMENT
INTELLECTUAL DEVELOPMENT
LANGUAGE/SPEECH/COMMUNICATION DEVELOPMENT
PSYCHO-MOTOR DEVELOPMENT
HEALTH/VISION/HEARING
SELF-HELP/CAREER/VOCATIONAL ABILITIES
SOCIAL/EMOTIONAL BEHAVIORS STATUS
. . . we only consented to:
ACADEMIC/PRE-ACADEMIC ACHIEVEMENT
LANGUAGE/SPEECH/COMMUNICATION DEVELOPMENT
. . . and we requested an OT/Fine Motor Skills assessment.
I understand that they need to figure out what skills and abilities Finn has in order to determine what therapies and in what setting will be most appropriate for him. However, we see no need at this time to have a school psychologist evaluate his intellectual abilities, social/emotional status or the like. He has Down syndrome; it goes without saying that he has cognitive impairments. However, having a label of “mentally retarded” or “developmentally disabled,” or an IQ number, or a prediction of how well he may do in school (this is actually under the description of the Intellectual Development Assessment: “reflect learning rate and assist in predicting how well the individual may do in school.”) put in his permanent file at this early stage, to follow him from here on out, isn’t something that I can see benefitting him. As far as Health/Vision/Hearing, Finn is under the care of a regular pediatrician; we don’t need the school assessing his health. This is not us just bucking the system; we know Finn better than anyone, and are in the best position to decide what he needs. It is our belief that if his main areas of deficit are supported (speech/language and fine motor), the rest will follow accordingly.
They were taken completely aback when Michael and I balked at just signing the consent form as is. They were taken aback when we asked why the consent form with descriptions of the assessments they expected to do wasn’t sent to us ahead of time so we could have an opportunity to go over it, talk about it, and decide what we wanted to do. They were taken aback when we asked to be excused for a few minutes to go outside and discuss it in private. But that’s what we did. In the end, we consented to just a couple of assessments, completely eliminating the need for the school psychologist’s presence at all. I would have liked to be a fly on the wall inside when Michael and I were outside. I imagine the conversation went something like this: “Cute kid, asshole parents!”
When we got the consent form out of the way, we agreed to let them get started on the assessments. As a small act of rebellion, I pulled out my phone and started video-taping, knowing full well that they wouldn’t like it, but waiting for them to tell me to stop, which they did at some point (something about confidentiality, which I think in actuality would be to protect Finn, not them, but whatever), but not before I got this footage:
Nothing earth-shattering, but you can see how cute Finn is.
Anyway. It’s not that I think their assessments can change who Finn is, it’s just that I wish they – everyone – could see him for the wonderful, unique little boy he is, and not, as my friend Chrystal so aptly described, just another case to work. I don’t want to stick him in “the system” only to be pigeon-holed and managed, with everyone just biding their time until they’re done with him, never really expecting him to be anything more than another Down syndrome kid who will pass through.
Many thanks to my friend Lisa from Genetically Enhanced for being available by phone and being willing to provide a wealth of information and moral support.
2 quick things:
1/. Oh my goodness – why on earth would they want to be considering career/vocational abilities in a (not quite) 3 year old!!!
2/. Good on you and Michael for standing firm and always keeping Finn’s best interests at heart. He is truly lucky to have you as his parents 🙂
Good luck with the rest of the process!
Something about that video really bugged me! I can totally see where you are coming from. Those ladies irked me for some reason. It’s almost as if Finn was just another job for them. I feel like they handled this so wrong. I would think he would be overwhelmed with two strangers trying to get him to do what they want. I don’t think my 2 year old would cooperate at all. I say stick with what you are doing because it appears to be working! I think I would “buck” the system if I were in your shoes!
I’m amazed at the two overwhelming, overbearing, intrusive strangers. What two-year-old wants a person he hardly knows to put her hand on his face and try to turn his head? What two, three, or four-year-old would follow that with actually giving his attention to what she wants, just because she wants it? Instead of acknowledging his initiative in playing with the bead like a pull-toy, the woman across the table wants to direct his attention to stringing beads on the string … as if anyone would give a two-year-old a string with a pointed end?
I couldn’t wait to see what you had to say about your Transitional Meeting, since we have ours coming up next week (we are very behind!).
I was so disappointed, not in you, but with the therapist. They seem to be irritated, you can see it in their faces that it was just a “job” for them and nothing more. I would also be upset if I came to the meeting and they told me that all of these people were here to evaluate my child right here and there.
In our case, we had all of Lillian’s evaluations done prior our transistional/IEP meeting. So, we were able to meet everyone who will be involved with her plan (only me because Bobby is still out on deployment). So, Lillian does not have to attend the meeting. We also received a letter from the school letting me know who will be attending the meeting.
I hope everything ends up working out for Finn. I hope everything works out for us as well! I guess, following up on how everyone’s IEP’s are going, there seems to be a split on the positive and negative. So, even with my preperation, I still don’t know how ours will go. Any good advice?
Sonia, you might want to look into getting an advocate – there are organizations you can contact for parent advicates, people who know the system and will attend these meetings with you and advocate for you and Lillian. I think at some point we are going to look into getting one.
Wow Lisa!
What a completely different experience than ours. All of Cullen’s evaluations were done prior to the meeting. I have actually never heard of testing being done right there?..I would have been absolutely frustrated with the process as well. Also each of Cullen’s evaluations were done separately. So speech/PT/OT/ psychological all done at different times and days. Otherwise it is way too overwhelming for the child. Also things like self help skills would fall under OT here.
For us I have had to find a balance with the school district. I have been a fierce,strong vocal advocate who knows my shit so to speak. They have come to respect me and may not always “like” me but will listen and do what I need for Cullen. I think you guys have to decide what are you looking to have for the future for Finn. Integrated into your local public school? Homeschooled?,A school specifically for developmental needs? The answers to that are really where the answers to this transition at this age are if that makes sense?
I am sorry everything seems to be done in the manner it is out there.
lisa, thanks for sharing. i think that you are an amazing mother (as is michael an amazing father to all the kiddos) and i really cannot blame you or disagree with you on your thoughts (regarding the system, keeping finn to yourself, the amount of tests that they wanted to do, etc). i had my twins evaluated several times (because as a first time mom, i wanted to see if they were developing well since they were a little preemie) and i tell you: at every single evaluation, the boys did not do things that they otherwise do/did twenty times a day…i remember that at the 24-months evaluation, they wanted them to kick a ball. e kicked it, p did not want to. both of them knew how to do it and i have photos to prove it. however, since p did not demonstrate it on command to a stranger that he’d never seen in his life, they could not give him a point for that skill. how silly!!!!!! want kiddo does something on command? a child with ds, or otherwise? well, maybe a child that is born to be a performer in hollywood and will do anything on command?! 🙂
bottom line: finn is yours, you know him the best, you see all the developmental milestones that he is reaching…and that’s wonderful. the system: maybe not so much.
School districts have to assess in all areas of suspected disability. You can decline, but they have to make the offer. I am glad you were able to make the best decision for you and your child. That is what IEPs and transition meetings are for. It is an offer. Not an absolute. Dont ever be afraid to discuss your concerns and voice your opinion. That is what the team is for.
Life As I Know It 
2 quick things:
1/. Oh my goodness – why on earth would they want to be considering career/vocational abilities in a (not quite) 3 year old!!!
2/. Good on you and Michael for standing firm and always keeping Finn’s best interests at heart. He is truly lucky to have you as his parents 🙂
Good luck with the rest of the process!
Something about that video really bugged me! I can totally see where you are coming from. Those ladies irked me for some reason. It’s almost as if Finn was just another job for them. I feel like they handled this so wrong. I would think he would be overwhelmed with two strangers trying to get him to do what they want. I don’t think my 2 year old would cooperate at all. I say stick with what you are doing because it appears to be working! I think I would “buck” the system if I were in your shoes!
What awesome parents Finn has!
I’m amazed at the two overwhelming, overbearing, intrusive strangers. What two-year-old wants a person he hardly knows to put her hand on his face and try to turn his head? What two, three, or four-year-old would follow that with actually giving his attention to what she wants, just because she wants it? Instead of acknowledging his initiative in playing with the bead like a pull-toy, the woman across the table wants to direct his attention to stringing beads on the string … as if anyone would give a two-year-old a string with a pointed end?
Good on you guys for not agreeing to their plans.
I couldn’t wait to see what you had to say about your Transitional Meeting, since we have ours coming up next week (we are very behind!).
I was so disappointed, not in you, but with the therapist. They seem to be irritated, you can see it in their faces that it was just a “job” for them and nothing more. I would also be upset if I came to the meeting and they told me that all of these people were here to evaluate my child right here and there.
In our case, we had all of Lillian’s evaluations done prior our transistional/IEP meeting. So, we were able to meet everyone who will be involved with her plan (only me because Bobby is still out on deployment). So, Lillian does not have to attend the meeting. We also received a letter from the school letting me know who will be attending the meeting.
I hope everything ends up working out for Finn. I hope everything works out for us as well! I guess, following up on how everyone’s IEP’s are going, there seems to be a split on the positive and negative. So, even with my preperation, I still don’t know how ours will go. Any good advice?
Sonia, you might want to look into getting an advocate – there are organizations you can contact for parent advicates, people who know the system and will attend these meetings with you and advocate for you and Lillian. I think at some point we are going to look into getting one.
Wow Lisa!
What a completely different experience than ours. All of Cullen’s evaluations were done prior to the meeting. I have actually never heard of testing being done right there?..I would have been absolutely frustrated with the process as well. Also each of Cullen’s evaluations were done separately. So speech/PT/OT/ psychological all done at different times and days. Otherwise it is way too overwhelming for the child. Also things like self help skills would fall under OT here.
For us I have had to find a balance with the school district. I have been a fierce,strong vocal advocate who knows my shit so to speak. They have come to respect me and may not always “like” me but will listen and do what I need for Cullen. I think you guys have to decide what are you looking to have for the future for Finn. Integrated into your local public school? Homeschooled?,A school specifically for developmental needs? The answers to that are really where the answers to this transition at this age are if that makes sense?
I am sorry everything seems to be done in the manner it is out there.
Alyson, we would like Finn to be fully included in our public school – that’s our ultimate goal.
lisa, thanks for sharing. i think that you are an amazing mother (as is michael an amazing father to all the kiddos) and i really cannot blame you or disagree with you on your thoughts (regarding the system, keeping finn to yourself, the amount of tests that they wanted to do, etc). i had my twins evaluated several times (because as a first time mom, i wanted to see if they were developing well since they were a little preemie) and i tell you: at every single evaluation, the boys did not do things that they otherwise do/did twenty times a day…i remember that at the 24-months evaluation, they wanted them to kick a ball. e kicked it, p did not want to. both of them knew how to do it and i have photos to prove it. however, since p did not demonstrate it on command to a stranger that he’d never seen in his life, they could not give him a point for that skill. how silly!!!!!! want kiddo does something on command? a child with ds, or otherwise? well, maybe a child that is born to be a performer in hollywood and will do anything on command?! 🙂
bottom line: finn is yours, you know him the best, you see all the developmental milestones that he is reaching…and that’s wonderful. the system: maybe not so much.
School districts have to assess in all areas of suspected disability. You can decline, but they have to make the offer. I am glad you were able to make the best decision for you and your child. That is what IEPs and transition meetings are for. It is an offer. Not an absolute. Dont ever be afraid to discuss your concerns and voice your opinion. That is what the team is for.