My name is Lynda and my son Ryan is 34 months old (2 1/2 or 2 3/4). He has had many obstacles in the past year alone and now he will be starting preschool at a private early childhood center since he didn’t qualify for assistance from my districts board of ed because of his birthday (he misses the cut off date by 3 days… don’t get me started). Well since last year he has been attending Occupational Therapy and Speech Therapy with Early Intervention which actually ends in a few weeks since he’s reaching his 3rd birthday. He also has Physical and Occupational Therapy at a local hospital that has a superb child development center. Unfortunately I can’t get him into Speech therapy there because there is a huge waiting list and priority goes to Autism and Down Syndrome patients.
Moving on… I’ve always noticed things about Ryan like not wanting his hands dirty especially during OT where he refuses to play with finger paint or playdoh etc. It took 4 months or approximately 12 sessions to get him to comfortably play with dry rice. His OT from Early intervention stated that she has always noticed he has issues with self regulation. I have also seen many checklists online but I’m seriously confused. Examining all the check lists I have seen many things that he does but there is also alot of things that he doesn’t do. For example, getting a haircut impossible unless I literally hold him down with my arms and legs (because he becomes incredibly strong) and screams with every snip of the scissors and don’t even ask about clippers, refuses to get hands dirty but when he eats he does so with his hands because he has trouble with utensils but immediately starts yelling for someone to clean his hands. But he loves to take baths so water is not an issue. He throws tantrums when I change his diaper but not because he doesn’t want me to but because he thinks he’s still dirty regardless how many times I wipe and show him he’s not dirty. He is not potty trained and that has been a mission in itself and although I have tried what was recommended (put underwear on him let him get wet or dirty and he won’t like it) that didn’t work either. He urinated on the floor 5 times and just says ohh mommy peepee… As far as cuddling or hugging goes, he was breastfed for 20 months so he loves to hug me and when he’s super upset tries to “feel me up” as my husband would say but its not easy for someone else to console him. He wants daddy when he’s upset with me for not understanding or if I’m not responding to him quick enough.
Because he has been through so much and I hate being the nagging mom i’m not sure if I should go to his regular pediatrician or should I just consult his OT at the private hospital since EI has already said he only has 5 sessions left and they wouldn’t be able to do anything cause he will be 3 years old, their cut off age. There are other things, with loud noises he covers his eyes only sometimes his ears. Movie theaters are impossible to visit not cause he wants to leave but he actually wants to stay but screams at any loud sound effects the whole time then screams when I try to leave. He recently had an EEG for suspected epilepsy similar to my daughter’s and just to get the stents on his head with cream was killing him. He gets itchy sometimes which he then asks for “crema” just to “stop the itching”. When he comes home he wants to strip down and be totally naked (except for his pull up cause I’ve told him if you want to be naked at home you have to be potty trained hoping that would work). He hates shoes and prefers to be barefoot with no socks and damn if i put socks on his feet where he can feel the stitching at his toes, that is another uproar… He prefers crocs with no socks. Usually I go through 4 pairs of shoes until he find one that he is comfortable in when I don’t let him wear crocs (he tends to trip alot when he has crocs on). He’s always saying boo boo with the shoes he doesn’t want even though they’re all the same size, they’re all sneakers and he’s worn them before.
I’m not sure if all this might suggest SPD… But I know I definitely need to start somewhere and I hope I will get more information here from fellow moms who have or are going through what I’m going through.
BTW apart from all of these issues, Ryan is on a Gluten Free Diet because of his many food allergies. He was also going through Growth issues and once I changed his diet he began to grow and gain weight. We suspect Celiacs Disease but he was too young to test and now to test him he would have to get back on wheat and then tested. I of course refuse to put him back on wheat since he’s doing so great on Gluten Free.
Thanks again, Lynda
Comments
Carri
Have you tried to get him into Head Start?
If he’s recommended in by Infants & Toddlers & his pediatrician, he may be able to get a spot- and they can help you keep him getting therapy
Just a thought– it’s a wonderful program once you get in… it’s a pain in the a$$ to jump through the hoops to get there- but you’re used to the process.
Good Luck!!!
Jennifer
He certainly has a lot of signs of SPD. My daughter has similar issues and was eventually diagnosed with Asperger Syndrome. Her story may be helpful to you. You can read it here:
http://babyminding.com/tag/2010/10/25/the-special-needs-child-jacquelyns-story/
As far as his sensitivity goes, I would suggest some major proprioceptive input like jumping on a trampoline for joint compression and heavy work. Swinging in a linear movement also helps organize the senses. And read The Out Of Sync Child! Talking to be pediatrician is a great start. We got a prescription for an OT assessment, and then my daughter was diagnosed with motor delay disorder, which got us 25 sessions a year with a co-pay. We paid out of pocket for the remainder of the year. Hope that helps!
joyce
I think going to an OT specialised in SPD would be a great way to start. I used to be a bit blaise about OTs but we wouldnt be where we are today without their intervention. Checklists for sensory will pinpoint where he is – he doesnt need to have all the symptoms in each section. Remember that there are kind of 3 levels in SPD and your child can have a mix of them. (maybe you know this but Im going to say it anyhow) He might be over responsive, under responsive or a sensory seeker. And is most likely a combination. And very inconsistent. On a good day, some symptoms wont appear but on a rotten day (and generally days) my 8yo will scream at the sun streaming into the window of the car.
My son is a seeker but then some of the input he seeks he cant handle and that sets him off.
I would do a checklist and go to OT with that list and work from there.
All the best with it all
Joyce
Lisa
I agree with Jennifer above. It sounds like SPD. A child can both seek and avoid–my autistic son does that. I would try to find an OT and possibly a developmental pediatrician. Deep pressure, swinging, a weighted blanket, etc may help at home. Let him play with water if it helps calm him down ( this works for my son). We love the Out of Sync books here, too.
Potty training took a long time for my son, too. Patience and watching his readiness signs helped us find success around age 4.
For movies, try a pair of noise- cancelling headphones, or get a pair of protective ear covers from a home improvement store. Both of my older sons use them. AMC Theaters have a movie almost every month that is sensory friendly. You can search online for one near you.
Hang in there!!
Hope
Hey, I’m just getting the hang of all this my son is 3 and he also has Spd and he does the same things your son does the past week has been well I’ll just say it h!!! For us so for today we are doing good but you talking to the doctor is a really good idea!! Good luck momma!!!
Jess
Big hugs! It certainly sounds like your son has some sensory issues and the fact that you’ve recognized it is a big step. I recommend the Out of Sync Child as well. It was the first book that made sense of what Angel was experiencing. Angel has not been formally diagnosed with SPD, but we know that she has sensory issues and we work with that.
Stacie Kershner
You may want to look at Wrightslaw.org, but I do not believe the school can use a birthday cut off for special needs services. These begin at age 3, regardless of when during the school year your child turns 3, as long as he meets the evaluation criteria of needing services – it sounds from your description like he might under Speech (if accepted under speech, then OT can be added but I don’t think it is a stand alone). Your early intervention program should be assisting with the transitition if you have had an IFSP and I wouldn’t just let this go. Without knowing your whole story, I am not positive, but to me, it sounds like a violation of IDEA and the local school board has a duty under the child find provisions to locate and evaluate children in need of services starting at age 3, not the school year start after the child turns 3.
Mary
Sensory issues can stand alone or be tied in with other things; it just depends on your child. Have you had any sort of screening done (you mentioned he might be delayed in speech?). Where I live, the public school system offers a free comprehensive pre-K evaluation — though it doesn’t include screening for sensory problems. They will screen for cognitive development, language development, fine motor skills and gross motor skills. The can also screen for autism and ADHD (though many won’t screen for ADHD until a child is 4 or 5), and possibly other things I don’t know about. My son is a sensory seeker, but while the screening we did at age 3 didn’t turn up anything that would qualify him for early intervention, the wonderful team that did the work were the first people to ask us if we’d ever hear of Sensory Processing Disorder. They gave us some very useful introductory reading, and told us that our pediatrician could refer our son to a OT for a sensory evaluation. Having that screening and the OT evaluation really helped us focus on my son’s overall needs, and eliminate other potential issues (in our case, we needed to confirm or deny ADHD in particular). If you’ve already done some of this, be certain that the different therapists you are dealing with speak to each other and work as a team! I still find myself as the go-between with our pediatrician and everyone else, but our OT will even send us information for my boy’s teachers, and the teachers have been delighted to fill out screening forms to send back to her.
lynarroyo23
Thanks ladies for your input. As far as school goes, I did contact a “span” a parent/student advocacy group that assists parents with board of ed or school issues. Ultimately, since it started to become a LONG process and I needed him to be somewhere by this week so that I could start school I decided to go with the private learning center at my College where my sister is one of the master teachers. Whats great is that since she already knows his issues, the school tested him/or better said evaluated him and his delays and issues were noted. Following this they created, along with my assistance, his individualized plan where they will work with him directly on our goals for him. He then will participate in OT and PT at the hospital that I already go to which insurance is now covering 30 sessions (Thankfully I hadn’t paid anything so they covered all the session from this year and thankfully I haven’t gone over 30). So I still plan on sending my letter to the board of ed (recommended by span) to request an evaluation for him (the first time I did this with Intervention’s assistance, I got a meeting and at the meeting the board decided my son didn’t warrant an evaluation). So i was told by Span (as well as a board of ed insider that I got friendly with – which like she said “u didn’t hear this from ME” lol) to send another letter requesting an evaluation. They have 20 days from the day they receive the letter to schedule a meeting. From there they have 90 days to schedule the evaluation – obviously after meeting with me first. So I figured if anything (crossing my fingers) he’ll get in by the new year (January) and by then I’ll be starting my Spring Semester where regardless I have to register him for the learning center. So hopefully he’ll be in the learning center until December, he’s getting one and one instruction apart from their daily structured class routine, and he has the same days off as me and same vacation and holidays off as me so in some way it still feels like the right decision. My main concern now is getting him evaluated by a specialist for SPD if that exists… I guess I will mention it again to his OT at the hospital, although I know she said he was due for his annual evaluation in November where these issues would be addressed. I heard about “Sensory” gyms but I’m not sure they take health insurance or whether insurance would cover it…
I’ll keep everyone posted!
Forgotten
As soon as my boys turned three they were referred over to the school system by EI. I didn’t even have to do anything. I think you need to talk to EI and make sure that your child’s case is turned over to the school. Also, that 3 day difference is BS. They still have to provide services to at risk children. If he meets the qualifications for services, the school system has to take over after he turns 3, no arguing it. I will check my Wright’s Laws books tonight but I’m pretty sure they have to take him.
Just shoot me an email at fairytaleforgotten-at-gmail-dot-com and I’ll let you know what I find tonight.
Heather Finnegan
I too have been super frustrated with our school system. Your son sounds like mine. He LOVES to be cuddled and hugged, yet avoids other things. Keep fighting with the school, since he had EI he should be taken more seriously. And 3 days is a bunch of baloney! Keep working with the parent advocacy group. Glad that your sister and school can help him. Ask your OT about SPD and find out if he/she is trained in it, not all OT’s are. Good luck!