Preschool Advice Needed- SPD with Oral Apraxia

by Rachel
(MA)

My daughter is 2.9yrs old and beginning the transition into preschool. In addition to oral apraxia, she has been diagnosed with severe sensory processing disorder. She is getting OT privately 1X/wk and 2X/wk by EI. She also gets 3x/wk ST private and EI combined. She has most of her problems with processing auditory input and some extreme oral and vestibular sensory seeking behaviors. It is unlikely that she will be able to coexist in preschool as she has no tolerance for screaming or crying amongst other noises (alarms, whistles, air conditioners, etc).


I'm fighting for a 1:1 aide that can remove her from the stressful environment before she shows cues of shutting down so that she can at least be productive in her 1:1 ST sessions. The school OT seems to have very little SI experience and won't specify her credentials to me. She also will not perform any kind of sensory assessment or eval as she said that none of it matters, only how my daughter will respond in the actual classroom (which I'm trying to prepare them for while preventing a negative learned behavior on my daughter's behalf).

She has said that there is NO sensory assessment/eval for children under four. Is this true? We just had a 2.5 hr eval done at Children's Hospital Boston, is this invalid for school? How can I get them to see how severe my daughter's stress and response to input is? She deserves an education and most certainly deserves speech therapy, OT, and typical peer interaction for language development just like anyone else. Please help. (BTW: I'm searching for listening therapy nearby as we haven't tried this yet but I'm sure I won't be able to convince the school to continue the therapy for her during her school day as they aren't trained in it).

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May 14, 2011
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follow up
by: Anonymous

Hello, I just read your question and answers you received. I see you posted this over a year ago, and I am wondering what your outcome was? I have a 2.9 yr old daughter right now that I think has SPD with Apraxia as well...she hasn't been diagnosed yet, but we are working on getting her evaluated. How you explained your daughter putting things in her mouth, being unaware of her surroundings (putting her in danger), and also her apraxia, sounds EXACTLY like our daughter. We are trying to think about what we will do with preschool as well...because i absolutely fear for her safety, but her speech is so delayed that I know she needs the interaction with other kids. Anyway, i don't know if you will get this message...it being over a year since you even posted the question...but I would SO appreciate any advice you could give! thank you

Jan 07, 2010
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preschool advice
by: Anonymous

Is there a local college in your area with an OT/teaching or early childhood program? Maybe one or two of the students would be willing to work with your daughter and attend preschool with her as her aide for real world experience. Maybe even if you approach the college they would be willing to offer some extra credit to students for doing this. It would look great on their resume and it would help you out.

Jan 06, 2010
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Thank you for advice. Still pushing.
by: Rachel

Thank you for all of your advice. I question myself everyday about whether or not I really need to send her to preschool. My biggest concerns are her comfort and her language. If I don't get a 1:1 aide that can pull her out of class before she shows signs of stress, then I won't send her. Having said this, I will fight like crazy for an aide. I have an advocate already so I hope they know how serious I am. I've also got three doctors and one OT who are strongly recommending an aide to the preschool for her, not only to remove her before stress and shutdowns, but also for her safety. My daughter has extremely poor motor planning and body-in-space awareness. In addition to bumping and falling into everything, she jumps and spins where ever she can (even on high playground equipment if not stopped!). To make matters even more risky for her, she mouths inedible objects and ingests inedible materials regularly seeking oral input. If she doesn't get an aide to keep on her throughout her entire day, her safety will be compromised. And...if I don't treat the severe speech delay and oral apraxia, how will she ever explain to strangers and teachers that something is bothering her. The school has already told me that it is normal for kids starting preschool to cry a lot with separation anxiety. If she can't verbalize that its the noise hurting her ears, then how long are they going to let her cry in pain before they rule out separation anxiety???! I need to do everything I can to get her expressing herself with more than just sign language.

I'm very worried that our insurance will stop covering ST, PT, and OT once she turns three, expecting the school system to take over. I also want to her to get as much peer interaction as possible for her language disorder even if it is only 30 minutes a day during quiet times. Taking her to separate private peer classes like Mommy and Me are costly and I've also got a 13 month old to take care of which makes it even more prohibitive. I'm draining our savings to stay home with her now only because there is no way that she could tolerate daycare and the stimulation there. Having a nanny would run us 3000-3500/month here in MA so that's not an option either. I'm just counting the days before I have no choice to go back to work and the only therapy she'll receive is what the public school system offers...hence my struggle. If anyone has experience with Listening Therapy, please let me know. Or- if anyone has heard of someone getting an aide based on safety or comfort for SPD (with another diagnosis), please let me know. Thanks to all of you for your help.

Jan 05, 2010
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Preschool Advice
by: Anonymous

Do you really have to send her to preschool this year? She is only 2.9 years old. Maybe another year home would give her the extra time to develop more coping strategies. My son had a very difficult time in 3 year old preschool, after more therapy during the school year and especially during the summer he did very well during 4 year old preschool. There is no rush - every child develops on there own. If she is not ready for kindergarden when the time comes there is always Pre-K. You could enroll her in some Mommy and Me or Daddy and Me classes, that way she would get the socialization she needs and you would be there to help talk her through anxious moments until she learns how to handle it on her own. If you want her to go to preschool this year try searching for another school that is more understanding. Your local public school should be able to evaluate her and offer preschool services to children who are having difficulties.

Jan 05, 2010
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Sarah, good comment.
by: Anonymous

Sarah,

Good comment!!! I just came back from my daughter's school (I am the one that posted the other comment, the mom of a 13 years old girl) and it was a rough experience again, I even started crying. It is unbelievable the cruelty and lack of compassion that I have to deal with at her school. They are fighting me now on the Asperger's diagnosis (???who do they think they are, I have two doctors that independently diagnosed with AS) and while they accepted to another IEP (the second one this year, based on the correct diagnosis of Aspergers), they are just amusing themselves at my expense...AGAIN...
The OT did her part of eval, but I don't have the report. My daughter grew out of some of the sensory issues (that makes me so happy and hopeful), but socially it is worse...

Well, don't ever give up!!!

May G-d help our children have the good and productive lives they deserve and may G-d give us patience and strength. I am tired, but I am not giving up on helping my daughter and I am adamant on not letting them pushing us around like they have been doing for 8 years now.

Jan 05, 2010
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Keep Pushing
by: Sarah

Show them your eval. from the university. I have run into some of the same problems as you. The OT at my daughter's school (Early Childhood Special Ed.) told me that I would just have to "deal with" the issues that my daughter was having. She offered no advice. She finally did one test and said that my daughter's fine motor skills were not bad enough to offer any help. My concern was not even regarding her fine motor skills. They also said that while they did not think her problems were sensory, even if they were they could not do anything for her since it didn't effect her "educationally".

So, I took her to the university and got a scrip for both the local hospital and the school to do an OT eval. Once I showed them this, they agreed to do further testing. I also took her to the local hospital and right away they said it was sensory which was my thoughts all along. I'm still waiting on the results from the school's eval ( they have until January 19th), but in the mean time I gave them the hospital's eval which showed SPD. Funny thing is, the hospital did the same test as the school in regard to my daughter's fine motor skills and showed that she was a year behind! It's scary to think that the school missed this. I realize kids have good days and bad, but they need to do more than one test.

The school will try and tell you that SPD does not effect them educationally, and right now it is my understanding that they can't do an IEP based solely on SPD because it is not yet in the DSM. However, if your child has another delay or issue that would warrant an IEP, they can work the SPD issues into that. I'm still struggling with her teacher and the fact that she refuses to believe that my daughter's SPD issues are the cause of lots of her problems. I don't know what else to do. I've shown her the diagnosis from the hospital and give her information from my hospital OT. I will just keep pushing for them to continue evals and make the individual adjustments that she needs. They of all people should know that each child is different and requires different accommodations. This is a special education program. Keep forging ahead and do not let them tell you that something is not possible. Go everywhere you need to go until you find that person to back you up. It will be worth it!

Jan 04, 2010
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Courage!!!
by: Anonymous

My daughter had severe reactions at school fire alarm and such in elementary school...she's 13 now and she's doing much better. Today she was explaining to me that they had a fire in the school kitchen and she was laughing about the fact that someone in the office pushed the tornado button as well as the fire button. Fire Dept came etc. they got to freeze for 15-20 minutes in minus 5 degrees Celsius outside, for the fire to be put out and the building to be cleared...but my point is...from the child that was totally SHUT after fire drills and had to be kept in the office for the reminder of the day 5 years ago (covering her ears for hours)...I was saying "thank You, G-d!" today.

I don't know how severe the sensory issues she has are, but...do not let the school bully you into downplaying the way you feel about it, my heart goes out to you, I have been crying and reading and paying cash to doctors for years to figure out how to make my daughter feel better, fighting with the school (the school insulted me so many times...I am not going to get into that, they were just purely ignorant about autism and sensory issues, I know because I have Asperger myself)...I think that they are so overwhelmed that they push our concerns aside, but they do appreciate a parent that cares about their kid. You are entitled by law for education for your child in public school and of course tests results from universities and such are valid and they have to take it into consideration, THEY HAVE TO!!! I threatened last time with coming to IEP with a lawyer...and it worked, they took me more seriously.

The school testing was always garbage in my daughter's case, I am still paying the bill from the big testing I have done for her 2 years ago (and I just paid 670 dollars to psychiatrist and psychologist for new testing, so the school can not bully me again into their "oh, nothing is wrong with her, she's just copying your behavior...lol...they are crazy). They did take the outside tests into consideration, I took with me a social worker from an organization that was affiliated with the circuit court in my county...believe me, I know how hard it is to be heard).

For decompressing, I found on this website something funny for parents about the IEP guide of survival or something like that...you have to learn to relax...those kind of things we are going through with our kids are very taxing and your child can probably sense it.

Don't let yourself bullied and I hope with all my heart that your daughter will grow out of it a little, like my daughter did (she has Asperger, also). Take your time and do what's right, but just know, you are not alone and there is no miracle cure, but with lots of patience it will get better (with those sensory issues come unexpected gifts, you might have a very gifted child, make at home a good calm world for her, so she can be happy and use her talents).

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