The day my son started kindergartden I had an eerie feeling that this was going to be a VERY trying year. He had some issues in Pre-K with not wanting to sit still, and wandering off to centers during circle time, but I knew that the beast that was public school, was not going to tolerate such freedom. I was scared for him. I was scared for myself. But I had hope that with some direction, discipline, and love it would all work out. I had NO idea what kind of ride I was in for.
It all started about the second week of school. I sent an email to my son’s teachers to give them a heads up and saying hey, my son doesn’t take to change well and may take longer than the average child to adjust. I relayed the fact that he went from getting an hour of recess a day to fifteen minutes, and that he went from being able to nap an hour a day to no nap at all. I also wanted to open the door of communication; to let the teachers know that me and his father were here for them and would support them in any way we could. I was hoping that email would be enough to set the stage for understanding, but I think I am the one who failed to understand. I don’t think I realized that sometimes teachers are overwhelmed, underpaid, frustrated, and some even repressed. That some teachers just don’t have time or room for understanding.
To shorten the story, my son had LOTS of issues starting out. Telling the teacher no, talking over her during story time, rolling around on the floor, kicking chairs, wrestling with his friends (a little too rough I might add), doing headstands, flips, cartwheels, playing with the water in the bathroom, playing with his food at lunch, and so on and so on. I can only imagine the frustration his teacher must have been feeling. I was devastated and embarrassed. How could the little boy I love so much, cause so much chaos? Something wasn’t right and I knew it. My instinct told me…. something isn’t right. Over the years I have learned NOT to ignore that voice of reason.
I hadn’t heard of SPD before, but I was talking to a friend of mine and told her what was going on with my little man. She asked me if I had ever looked into the possibility of SPD and of course I had no clue what it was. She told me to look it up and really consider having him evaluated. So, I requested an evaluation through the school. Then, it was confirmed. My son, was a definite positive for SPD. Okay. Now what?
The school OT recommended a sensory diet for him in the classroom and at home. Everything got much better and was pretty level over the next four months. Then… it happened. Change. My son’s school had a new building constructed and they moved in the week after spring break. Since then.. it’s been all down hill from there. All reds everyday, calls from the teacher every other day, meltdowns at home, and then that dreaded call from the principal. The one that says you have to come pick up your son because he has been kicked out of school for the rest of the day. He scratched his teacher. She attempted to pick him up during a meltdown and he went into fight or flight mode. Oh boy.
After that call, his father and I scheduled a conference with his teacher and the principal. We all agreed that maybe what he needed was a change up in his sensory diet. Maybe his body had gotten use to the strategies in place and that was the reason for.. you guessed it… REGRESSION (which by the way I never realized was NOT the case until I read http://www.spdbloggernetwork.com/2012/04/26/it-isnt-regression-2/ ). Any who, the principal agreed to get with the OT and come up with some new strategies and she would get back to me.
Unfortunately, a week passed with no new strategy. I did however get another phone call. School: Come and pick up your son within 30 minutes or he is suspended for tomorrow as well. ME: ”What happened?” School: Oh, well, two little boys were agitating him on the playground and he decided he couldn’t take it anymore and hauled off and punched one of them right in the face. Oh boy. See, his teacher doesn’t want the kids tattling on each other, they are to work their problems out on their own. This was the only way my son knew how to solve it being that he tried to walk away and they followed. Not that it’s okay. It’s still unacceptable, but at this point I wasn’t sure 100% how to relay that to him, I wasn’t even sure he would understand it. In his mind, being that he could tell his teacher, and he tried to walk away, he had done all he could. Except for, well, you know.
After that day, I realized that no amount of meetings or emails was going to make anyone understand what was going on with my son. And truthfully, I don’t even think I knew for sure. I didn’t know where to turn. I was hurt, confused, and angry. I felt like they just wanted me to take him home and give him a good spanking, because you know, obviously I wasn’t disciplining him. I didn’t like feeling this way. I didn’t like the pressure of feeling as though I was some bad out-of-touch parent who allows their child to do whatever they please. Where the child is in control. My son cannot even control himself, how could he control us?
I reached out to the OT at the school for some sort of direction. She finally told me what had to be done. A formal evaluation had to be performed by a professional so that my son could receive a 504 and so we could then implement an IEP for him. That was the only way I was going to be able to get some assistance. That was the only way I could at that very moment help my son. Finally, someone who cared about his welfare and education as much as I did. Finally someone that saw my son’s behavior as more than just attention-seeking and knew that there was more to the picture than my son “just wanting an audience”. Finally, someone who saw me for what I was; a good parent with no where to turn.
Today is a new day for us. I have received the call. Sensory Modulation Disorder as a Sensory Seeker is said diagnosis. Recommended treatment? Occupational Therapy. Is there vindication of my feelings, that gut feeling that something more than “acting up” was gong on? Yes. Is there a little sense of calmness to at least know there is somewhere to start now? Yes. See now I can say, no matter what you may think is going on with my son, a professional says different. But the biggest thing of all for me is no matter if they think my son is in need of a good spanking, I no longer have to even consider that maybe, just maybe, they are right. I know they are wrong. My hope has returned.
Comments
Carissa
Oh momma, hang in there, it gets easier from here! Knowledge is power, and having a diagnosis will allow you and others to better understand your little guy and what he’s going through. And yes, it does make you feel vindicated, although I’ve learned that even with a valid diagnosis, there are still people who downplay it, tell me “he’s just being a boy,” etc, and I’m learning that these people just never will get it. As long as the IEP is in place, assuring he’s getting the support he needs at school and at home, that is all that really matters. (((hugs)))
oneofeach4me
Carissa thanks SO much for the uplifting words! I am so glad that I found this online community as it has helped me process so many things with this disorder. I just re-read my blog post and realized that I rambled on a little bit.. but I was pretty upset when I wrote it!
Vivian
Wait…you guys are getting IEPs for SPD as a single diagnosis? They won’t do that here.
They’re giving my son classroom aids, etc., but they won’t put an actual 504 or IEP in place…
JM
If you have a diagnosis then you have the right to have them implament a 504 or IEP for your child. If the school is fighting you about doing it, call the school district, if they wont help you, then go to the school board.
I have 3 children, all adults now, and because I was a young mother, didn’t know any better and such, two of them “fell through the cracks” within the public school system. I didn’t know or understand my rights to fight for them to have the things they needed to have success in school. Both of them ended up dropping out of school and only one has gone to get their HSE. Fight, fight, FIGHT the school(s)!!
I am now raising my oldest grandson (almost 4 yrs old now), and he has SPD. I am all over the early education intervention places and the doctors when it comes to him because I refuse to allow him to be like my other children who got shoved through the system with little to no help!
Wishing you all the best!
oneofeach4me
Vivian my son started out being evaluated by the school OT for the SPD and she came back with a positive diagnosis and had put a sensory diet in place for him to use in the classroom. I also met with her twice to learn techniques to use at home with him. However, he was not actually receiving ANY OT treatment. In order for him to receive therapy at school he must have a 504 which requires an official diagnosis from a professional. This is so the school can be reimbursed for compensating the OT. That being said, we won’t actually get to implement his 504 until next school year, but it’s already being set in motion.
I agree with JM, you have to know what you and your child’s rights are. Getting my son’s school to communicate with me has been exasperating to say the least. You just have to find someone who is willing to point you in the right direction, even if that means getting an advocate (most school systems don’t like to hear that word at all). I ordered The Complete IEP Guide by Lawrence Siegel to read over the summer so that I am fully equipped with all the knowledge possible about what my son’s rights are. Good luck and feel free to message me anytime if you have questions.
Susan S.
You’re doing great mom! I’m so glad that you have found support in your school system. Our school system won’t diagnose or treat sensory processing disorder. I did get a 504 plan based on my son’s SPD, and he finally got behind enough with his academics to qualify for an IEP recently. He can’t qualify for an IEP based on SPD here.
Keep going and keep advocating!!
oneofeach4me
Thanks for the encouragement Susan! I actually just came from a meeting at his school and was also informed that they won’t do an IEP unless he is behind in his academics as well. They are going to do the 504 however based on his SPD.. so at least that is a start!!
Heather Finnegan
I can only get a 504, but it’s not even worth it-my son isn’t even in public school. There are so many kids worse than my son, the bar is set pretty low to be able to get any help.
I am so glad you found some answers and now have a plan in place to help your son!
Charlie
Hang in there! I’d like to say it gets better, but, honestly, I’m not sure it does. YOU do get better at navigating it.
It is frustrating that a diagnosis does nothing for your child. What gets your child help is based on their academic need. My son was denied PPCD as a preschooler because there wasn’t enough academic need. The district could have implemented so many helps if they’d gone by his diagnosis so we didn’t start K behind the eight ball. Once we did start K we did get a full autism evaluation (which we had just gotten a medical diagnosis for a few months prior). By January we had an IEP in place. He has a genius IQ, but the rest of it prevents him from being able to participate in school like he should. The IEP is helping a great deal. For us, it’s falling into place.
The older your child gets, the more his needs will changes and the expectations will increase. You may have a 504 now, but an IEP might be what you have in a year or two. And 504 or IEP doesn’t matter. What DOES matter is that your child gets what your child needs to be successful in school. Just keep pushing until you DO get that for your child.
And, never, ever underestimate being an involved parent. That alone, I believe, has opened doors faster and easier. I always have the first parent-teacher conference within days of finding out who the teacher is (before school starts). I keep a notebook and add to it each year about my son–his needs, his strengths, his weaknesses, his likes/dislikes, what has worked in the past at home and at school (not always the same thing), and some inspirational/education items on his issues. I also walk out of that meeting as room parent–it gives me more knowledge much more quickly than if I was the average parent. And then I bend over backwards for my teachers so when they get overwhelmed, they fight the frustration harder. I don’t care if that is the way it *should* be or not, it *IS* the way it is.
Another one of my boys has SPD and SPD only. He qualifies for nothing from the school, and with teachers who cut him some slack, he really needs nothing–but his SPD is minor. However, being visible I believe has helped a lot.
oneofeach4me
Charlie I also was pretty discouraged that they didn’t seem to take their own OT’s advice to heart as far as her diagnosis. The OT said the same thing as far as his needs changing as he gets older and that the 504 can be changed and an IEP put in place once he needs it academically. My frustration with the whole thing is that I would request meetings through email, and sometimes I would get no response at all (for instance the counselor at the school STILL has NEVER responded to my emails) and in the one instance I mention in my blog, where we had the meeting with the teacher and the principle and the principle was suppose to follow up with the OT and get back to me and that never happened. Yet, one week later they were calling me to come pick my son up again. I was basically told that without the 504 the school wasn’t going to do anything to help him period. It would just be sending him home as a fix to the problem. To me, that is unacceptable. However, the more he misses of instruction time, the more behind he gets and the faster the track to the IEP. So either way, that end result will be the same.
I appreciate your insight on being an involved parent. It was just extremely frustrating being that we are so involved, yet we were being treated as if we weren’t doing ENOUGH. My son attends a public charter school and every child has to have 20 hours of parental involvement logged each year in order to continue to be enrolled at the school. Being that this is the policy, there are no room parents. We logged over 60 hours this year with 50 of those directly in the classroom and doing things to help the teacher. We are always accessible and easy to reach. I think we deserved a little more compassion than what we have been getting over the past few months.
I have been the room parent for my daughter every year at her school, and her SPD is like your other son, pretty minor. And I agree that being visible and accessible helps a lot. But sometimes, the administration in these schools will do nothing until you put the legalities in place that says they MUST do it. That is the part the irritates me the most.
oneofeach4me
Oh, I forgot to mention that I LOVE the idea of the journal! I started one today after reading your comment. I think that is a wonderful idea!
Jenny from the Block
Glad you found some good possibilities for help! I am even more glad that you got some hope back. It is amazing what a little tiny bit of hope can do for our hearts!
cookiemom
OneofEach…Reading your blog was as if someone was writing a story about what I am going through. I am waiting, just waiting for the phone call to come pick my son up from school. However, since there are only 4 days left of school, I think they are pretty much tolerating his behavior. This Principal has me in such a tizzy about what might be going on with my son. He has been diagnosed with SPD and vocal tics. Yet one day she feels he is really trying to control himself and 2 days later she really thinks its more of a behavior problem then a medical problem. Whatever lady! My question is how do you know when you “need” to get an IEP or 504?? Is this something that the Principal would reccomend? Also, my son doesn’t meet the requirements to have the school OT work with him because he isn’t “special needs”. So, his teacher sends him out to the hallway to do wall push ups and that’s basically all of his sensory diet he is getting at school..even though they have a sensory diet from his OT of what he needs to do at school!! Sorry to ramble on. I am just so frustrated with all of this!
oneofeach4me
Cookie ~ I am not sure what state you are in, but as far as I know, if you have a diagnosis from a professional (psychologist, psychiatrist) then you qualify for a 504 regardless. A 504 is what would qualify your son for “special needs” and get him that OT therapy in school. With the 504 you can get a plan set in place that will state what needs to be done in regards to his sensory diet and the school will have to follow that. You can readdress it and change it as he becomes adapt to one sensory diet. As far as the principal recommending it, I would say it depends on that person and the school in general. The school’s OT is the one who told me about the 504 and what I needed to get it. You need to contact the school counselor and inquire about what you need to do to have your son placed on a 504 and go from there.
As other’s have mentioned here, and what I just found out, you cannot get an IEP unless the child is behind academically. An IEP is geared more towards academics and strategies to help get the child caught up to their grade level.
The reason I stressed getting the 504 for my son is that it got to a point where they were just sending him home due to his antics instead of address them. If he could go to the therapy room and jump into a crash mat a few times then he would be able to come back to the class and listen.
At the beginning, they were the same way with my son as yours, saying that it was behavior related being that some days he could control himself and other days he couldn’t and they couldn’t pin down the triggers. Well… that is part of SPD… there are really good days and really bad days. Plus, if the teacher is not familiar with SPD and it’s symptoms then that makes it even harder. Once I got his diagnosis I gathered as much info as I could geared towards teachers in the classroom who had SPD kids and gave it to her. She was grateful, but I think it takes time. She has kids of her own too.. so her time to learn all the stuff is limited. I will say though that once the psychologist came back with the same diagnosis as the OT, my son was shown much more tolerance.
Hang in there and keep doing what you can to get all the information on what you need to do to get that 504. And take some of the advice and pointers that Charlie gave in the comments. Being visible and supportive towards the teachers and the administration and even keeping the journal are really good points. Let me know if you have any other questions!
Mandy
I can so relate to this post! I’ve been meaning to comment since you posted, but just now had the chance. Our son will be in first grade next school year at the school where I teach. He is currently in a private 5K program. He was diagnosed with ADHD and SPD last spring. It was my goal to get a 504 in place prior to the start of school, simply because I wanted him to have the safety net the day he walked through the door. The county will not allow it until after school starts. While I understand their reasonings, it still was a little disheartening. The good thing about the entire situation is that as a faculty member of the school, I can pick his teacher. I have picked one that will satisfy his sensory diet. Anyway, I loved this post and could totally relate.
bewistyus
Hello! I am a Minneapolis, MN Mom of an SPD kiddo (age 5.5) who was diagnosed last spring (2012). In addition to his SPD (he is a 100% grade A seeker btw), he has an extremely high IQ. My son did not display any developmental, behavioral or emotional problems until age 4 when his former daycare brought concerns to our attention that ultimately resulted in him being evaluated and diagnosed with SPD. We then moved him to a new daycare that could better accomodate him and provide onsite OT services. Our biggest challenges with our son are listening and emotional melt downs that result in him acting out physically- biting, hitting, scratching.
We just closed our our first week of kindergarten (day 3) in the Minneapolis public school system by having to pick up our son for physically acting out during an emotional melt down (when the asst. principle picked up the phone to call us). When I went to pick up my son, the principle asked me if this was the place for him. HEARTBREAKING.
I thought we did everything we needed to do to prepare the school. We met with them before summer started, we laid our cards on the table, we told them we were unsure how kindergarten and a 26 kid classroom would go for him, but yet, the principle says to me “is this the place for your son” on day 3. Really? I understand that it’s not OK for my son to hit the assistant principle, but he’s 5.5 on day 3 of kindergarten.
So, that leads us to next steps: A meeting with the staff and his teacher, hopefully a sensory diet in the classroom and….. IEP , 504? Like many of those who commented on this post, I am doubtful that my son will qualify for in school OT as he does not have ASD or ADHD.
I am so sad and frustrated and confused about what to do and how to be the best advocate for him. I’m not sure taking him off-site every week for OT is the best thing either as our past experience with OT is that he does great 1/1, but has difficulty applying what he learns in OT in the classroom.
To add insult to injury: Both me and my husband work full time, we have another child (age 3)- no issues yet (fingers crossed) and we are expecting our third child. Help!
Any advice any of you have would be greatly appreciated.
Beth
Lizbeth
Beth, I just saw your comment pop up….the first few weeks of school are so hard. Add special needs and sometimes it can be rough. It sounds like you did everything you could to educate and prepare the school and your child for the upcoming year. My gut tells me the assistant principal should have never said that about this being the right place for your son. Never. Clearly, there has been a massive miscommunication somewhere…. I’m so sorry. Now down to the what should you do part…..there should be a meeting and thing need to be hashed out. If this is not the right school then where? There should be some more studies done—a functional assessment at minimum. If your child is hitting then there is a reason–it should be found out. I’m sorry but I have to run out but I wanted to write something to you really quickly. I’m so sorry the asst. principal said that and I’m thinking of you. I’ll pop back on later this evening….
EHCMom
Bewistyus: Keep pushing them. If his sensory issues are affecting his education, they are required by law to make accommodations in the classroom to meet his needs. If they don’t think he is “appropriate” for the public school, they have to pay for a private tutor to educate him–their dime. It’s really no different than a teenager getting expelled. The school district is still legally required to educate every child to 18.