Hi all,
this is my second post because I dont think my first one went through. My 2 year old son was diagnosed last night with SPD. He has been a part of Early Intervention for most of his life now, he takes speech therapy twice a week, physical therapy twice a month and will start Occupational Therapy once a week. I have read the Out of Sync Child but need to re-read it. I would love to take the opportunity to speak with other moms in the area about what I can expect down the line, some good reading ideas, etc? I am a bit overwhelmed with professional advice and information. Now I just need regular old fashioned MOM advice.
April:
where are you located?
have you read sensational kids? i think it is much more helpful...
warmly,
Patricia
Early intervention has Parents Liasions that you can talk to. If they don't have experience with Sensory Processing personally with thier child, you can ask them to "hook you up" with another Mom going through the same situation as you. You aren't alone, their are plenty of Moms going through this. Ask your Service Coordinator for the Parent Liasion's number.
April,
There is a SPD group through www.babycenter.com that may be helpful to you. I have found it really informative.
Hope that helps & good luck with things!
Hi April. I too was very confused and overwhelmed when my son was diagnosed. It's not something that I had ever heard of before, and I had trouble finding good sources of info. Here's a couple of suggestions:
1) Skip the re-read of "Out of Sync Child." (It's tedious and outdated.) Instead, get a hold of "Sensational Kids: Hope and Help for Children with Sensory Processing Disorder" by Lucy Jane Miller.
2) There are some SPD/PDD-NOS/Aspergers groups on www.meetup.com. (There's a big one in Naperville.) Even if you can't get to meetings, you can post questions on their discussion boards, and reach-out for other recommended resources.
3) If you want to talk to me, send me a message! I would be happy to help "decipher" some of the therapist talk and share my experience.
It's absolutely wonderful you are getting so many resources from EI! Keep it up and ask/push your therapists to find solutions for the issues you and your son encounter when the therapists are not around.
Best Wishes!!
Hi April,
My son was formally diagnosed at 18 months, but we had been told by others that he had SPD from about one year old. My daughter, who is 19 months older, was diagnosed at 4 1/2 years old. I second Sensational Kids by Lucy Jane Miller. It is MUCH easier to read and understand. I would also recommend Raising a Sensory Smart Child by Lindsey Biel and Nancy Peske. This one is extremely helpful when it comes to suggestions for difficult issues. It gives several suggestions on how to deal with sensory issues your child might be having. (Difficulty with toe walking, food preferences, clothing, etc.)
Feel free to e-mail me off list also. My son went through EI, then the school district's preschool program, and at the end of kindergarten, they declared him cured. (NOT!) I'm near Arlington Heights and EI was through CFC #6. The parent liaisons there were extremely helpful, and even started book groups and support groups focused on SPD. We were allowed to attend even after our son aged out. I learned SO much talking to other parents who were at different stages of dealing with this disorder in their child or children. There is hope; my son seems extremely normal, and has progressed immensely since he was a toddler. The sensory diet is now second nature to us, although it seemed overwhelming at first. He is still getting private OT, but we feel he still benefits from it, and our insurance covered most visits last year.
There are also online groups through Yahoo. I think one is "sensoryintegration" which is national or international, and the other is "SPDIllinois" which is more local. There are some members from the national/international one who are trying to plan in person meetings in the northwest Chicago suburbs, but it hasn't taken off yet (we just started talking about it the last 2 weeks...)
Maria
April,
I do not know what you are going through, although I feel for you. How scary, confusing, and frustrating it must be right now for you. After reading your post, I thought maybe one of the therapists your son sees, might know other moms who are in your same shoes. I think that would be great if you could befriend someone who knows what you are going through. It always helps to have someone to talk to who can relate to you. Just a thought.
My son receives PT therapy at Easter Seals (in Villa Park) for what everyone believes is SPD (just haven't been officially diagnosed). The OT there recommended "Raising a Sensory Smart Child" claiming it was an easier read than the "Out of Sync Child". Personally, I liked the "Out of Sync Child", I felt like I could identify with what they were talking about.
Hi April,
I know how you are feeling...I have 5 yr old twins both diagnosed with SPD each on opposite ends of the spectrum. You are lucky to have an early diagnosis so that you can get the help your son needs as well as the help you will need to learn to handle him as he gets older. We have been out of therapy for a over a year but with the start of kindergarten my daugther has reverted back and we are looking into therapy again. My son has worked hard and shows hardly any signs anymore or at least he deals well with them! There is a great website I use for information http://www.sensory-processing-disorder.com/index.html.
I am always happy to talk, I find that is helps a great deal for me to learn from other moms.
Hi April,
My boys also have SPD in addition to asperger's syndrome. My kids (5 & 9 y.o.)never qualified for in-school OT as they would "hold it together" all day and then come home and melt down. As a result we did OT privately and I'm so glad we did. It's helped tremendously. Usually private OT's do more total body work, whereas from what I've heard, OT in the school setting can be limited and will only address what affects your child academically. Definitely take what the school dist. is offering, but if you feel your child needs more, a private OT can supplement the school's help. Feel free to contact me if you'd like to talk. Good luck!
oh, april. my heart goes out to you! it really does. i was in the same situation about 2 yrs. ago w/ my daughter. it will all be ok. believe me. same thing w/ my daughter and now she is loving life to the fullest being a normal 4 yr. old. she is in her 2nd yr. of pre-school, she has wonderful communication skills, she is doing every-thing a normal 4 yr. old should be doing. (devolpmentally) she also goes to speech 1 day a week. this is her 2nd year w/ that as well.
i also have a 2 yr. old boy, who is in speech. he doesn't have the sensory issues like his sister did.
but it will all work out fine! i have to give you a "thumbs up" for getting your child the proper care in enough time! what a wonderful mother you are. it sounds like you are doing all that you can for now for your child.
i also have the sensory book. good job! there is also a book by the same auther called "The out of sync child has fun" i think that's what it's called, something like that. just google it. but it is a book all geared to games and projects to do w/ your child. i got it on amazon for really cheap!
here is my email, i want you to email me so i can forward you some additional info about SPD.
keep up the good work, and don't be so hard on yourself. just keep in mind that you are doing all that you can, and that is wonderful! email me if you ever need to talk any-more!
out of curiosity, do you live in northwest indiana at all?
crystal
Hi April,
My son was diagnosed with SPD when he was 20 months old. In addition I have been a child care provider for children with special needs for over 17 years as well as a foster parent to special needs kids. If you have any questions, concerns, looking for advise on where to find resources, or just looking for someone to talk with feel free to email me anytime.
Hi April,
My daughter was diagnosed with SPD at 18 months. After over a year in therapy, we unfortunatly saw minimal results. It never occured to me that there could be something more going on. The most helpful resource for us has been a book entitled "Healing the New Childhood Epidemics" by Dr.Kenneth Bock. Both of my children have severe food allergies as well, which is why I picked up the book in the first place. For my daughter, she has made almost a complete recovery through diet and supplementaion I learned about in this book. At 18 months she tested out at a 6-9 month level. We took her out of therapy just before she turned 3, and began dietary changes as well as vitamin supplementation. Now she is 4 and functioning mostly in line with her peers. For us, her issues are clearly bio-chemical. I just wish someone had told me sooner that there were other things we could try to help her besides developmental therapy. This book in particular has been a literal life saver for us! I wish you luck on your journey with your child. Take care, Jen
Hi April,
My son is 5 years old now and was diagnosed at 2 1/2. He wasn't speaking and since he was my first I didn't notice some of his fine motor skills and a few other things were not age appropriate. He was sensitive to things even as a baby. He can't handle certain sounds. It must have something to do with pitch or tone because it doesn't always seem to involve volume. He is very strong and tends to jump around and rough house and not realize that he could hurt himself or someone else. I think it might go hand in hand with OCD because everything has to be a certain way. Anyway, I've been there and I know it can be hard. Good luck! Nicole