Is it really this hard?

by Christi
(Denver, CO)

My daughter (3 1/2) is currently in the evaluation process for SPD. We were lucky to have a doctor who has a daughter near the same age who has this disorder, so there was no questions whatsoever sending her to an OT. Thank goodness for that. However, I have been doing as much research as I can to make sure I am informed and fully understand what my daughter feels like. She is tactile, orally, and auditory defensive, and has internal and emotional regulation issues, as well as auditory processing issues.


I have been looking at the Q&A on this site, and my anxiety is growing the more I read. I am terrified of sending her to school because of all the apparent issues getting them the support they need. Is it really this hard to get services through the school? I have already been told that child find can't do anything for her because her development is way ahead, as well as her intelligence. Homeschool is not an option for us for money reasons, so public school is all we will be able to do.

Are we really going to have this much trouble getting her the care and support she will need in school? And how do I go about getting a (hopefully free) advocate to help us out?

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Apr 12, 2010
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one more thing...
by: Anonymous

Once your daughter is placed into a kindergarten program, let them know right away what has already taken place with your daughter. Tell them you want to setup some evaluations of your daughter, such as behavior and speech. After they begin evaluating these things, they'll want to setup an IEP. This is a meeting that you might have the General Ed teacher, any aides to the classroom, the specialists doing the evals and possibly even your principal of the school, all attending this meeting. They are all there for one purpose - to HELP your child do their best. This is where you'll begin to advocate for your daughter and they will listen, take notes and hopefully come back with helpful information and questions - that will hopefully begin a great working relationship between everyone. Be as open and honest as you can, because once you feel that others understand what your daughter is suffering through, its quite empowering (at least from our experience anyways) as parents that are NOW CAPABLE of helping their child. It feels good to be validated, even if it means admitting your child isn't perfect. While admitting your family needs help, you've just opened some doors to support and encouragement. I am currently reading a book called "Parenting a Child with Sensory Processing Disorder: A Family Guide to Understanding and Supporting Your Sensory-Sensitive Child"... We have 3 other children that don't suffer from SPD, so it has affected our entire family. I am hopeful this book will shed some new light for our family.

Again, I wish you WELL with your daughter, you're already heading in the right direction.....your online doing research!

Apr 12, 2010
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Schools districts try....
by: Anonymous

Exactly as these other parents have said to you....You will be the BEST advocate for your child. My son is 8 yrs old and in second grade at a public school. He continues to struggle academically, however he's come a LONG WAY socially. Its been a long road to get where we are, however, we've had lots of support from our public school and that has been very HELPFUL. We switched to another elementary this fall that provided a larger Resource Room setting, than our last school. Our son loves the new program, which is wonderful and a great start......for a better education and better self esteem... Because we keep letting the teachers and staff (OT's, behavioral therapists, speech therapists and anyone else who will listen) know our daily struggles, they are always on board to help us with those struggles. In defense of the school districts, they don't want to step on toes and don't want to PUSH anything on you that you don't want. So do your very best to let the schools/teachers/therapists KNOW your troubles and concerns and they will do their best to HELP YOU get through them or help you locate SUPPORT.

The more WE know, the better we can HELP our kids! I wish you and your family STRENGTH to get going in the right direction.

Apr 09, 2010
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Best Support
by: Anonymous

One of the best support groups I found was through an eating disorder clinic associated with a medical university. My pediatrician had to refer us and it was a drive (we had to spend stay overnight) but it was well worth it. We were treated as a family unit and by a team of medical and OT professionals. They gave us tools & tips to cope and just be successful at every day living. Your may not get the support you are looking for from school systems, they are overwhelmed. Try going through your pediatrician.

Apr 09, 2010
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Well.....
by: Anonymous

As with any challenges with your kids you will be their best advocate and mouthpiece until they are able to understand themselves what they need. It's especially hard for SPD kids because this is their normal. You will become an expert on what triggers your daughter, but it takes time and alot of missed signals. You will need to have many meetings with anyone who spends alot of time with your child even grandparents, ect. My daughter struggled through elementary school and I helped to maintain a healthy sense of self worth within her. I think of all of the challenges that's the hardest. It's when she realized she was different. Some kids with Spd keep up just fine in academics, some with physical activity. Some need more time period. You learn really quickly how NOT to sweat the school expectations. Schools move kids through things so fast anymore if your child lags behind it can create huge amounts of pressure which can feel really unfair to a child who is genuinely doing their best.

Honestly there were times where my husband and I said that grades will come second. Our daughter's happiness and self worth had to come first, she always did her best. With maturity, ot, and lots of love she's now an excellent student. Each journey is different but you child is already lucky to have you and an early diagnosis.

Apr 09, 2010
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process
by: Anonymous

Hi, I am in the process of getting an IEP for my daughter, who used Child Find and gets speech and OT from the public school system.

When I contacted her kindergarten school, I was told that if it's not on the IEP, they won't address it. My daughter's tactile, auditory and oral sensitivities are basically ignored- "you'll have to see after she starts school." See what, I wondered?

WEll. Not what I had in mind.

One child at our school has been suspended 4 times from kindergarten because of his SPD issues...our school just doesn't know what to do with children unless they have autism (they send the children to another school) or Down Syndrome (the children have a shadow).

I'm hoping you'll learn more so I can learn from you!

Apr 09, 2010
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Somewhat
by: Bonnie

So my child who has been diagnosed with spd is almost 4 so I don't know a whole lot from personal experience with him regarding school services. But he is being served by the school system right now for speech and we had him evaluated by the school for ot. He didn't qualify so I am thankful we are currently (and already were) in private ot. But I taught school for several years in elementary before my kids were born and am currently a private tutor so I do have experience with other children needing services and in my experience yes it can be hard. But the key is that you (your child's best advocate) keep at it until you are satisfied with what is being done. It often seems as if your job as that is never done and that you can never relax but unfortunately that is what it often requires in order to secure the best environment and services for your child. But it can be done!

Just stay informed about your rights as a parent and what is going on with your child and the symptoms of the disorder, what is going on at school with the teacher as well as the services offered. You sound like you are off to a great start researching all that you have already so I am sure this would be something you would do anyway. Good luck and hopefully it won't be as hard as it sounds. Also your daughter may have made vast improvements by the time she starts school so she may not require too much extra help.

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