I’m so glad you’re here.
I understand that you’ve been struggling. Please, sit down. It’s a lot to ask, I know, when things are out of control around you, but you’ll feel better if you sit for a moment.
Take a deep breath.
Again, I’m happy you’re here. It doesn’t matter how you got here. Maybe you Googled “my son has meltdowns not tantrums” and that’s how you found us. Or maybe your friend suggested a web search for “sensory processing disorder” because she saw something in your daughter’s behaviors that looked familiar, like her own son’s. Or maybe…
Maybe you’re here because you just know something is different about your child. And you feel so alone.
That was me three years ago. I knew in my heart that my son wasn’t like the other kids. He was not like his older brother at all. I actually knew it from birth, but it wasn’t until he was almost two years old that I really grasped that something about him was just…different.
Everyone told me not to compare my two boys. “Your oldest was SO advanced”, they’d say, “and so easy going.” “My second boy was much wilder than my first.” “You wouldn’t want your kids to be exactly alike, would you?”
Maybe you’re hearing this too. When your daughter screams for an hour after her hands get dirty, maybe your friend tells you that “she’s just a dainty girl”. Or when your son is crashing and smashing into anything and everyone around him, maybe your spouse says “it’s just boys being boys”.
But you’re here because you know it’s not that. Your gut is telling you something else.
When I spent hours outside a tent during my cousin’s wedding because it was too loud and too crowded for my son, my gut told me something was wrong. When he couldn’t sleep without touching me and hugged me so tight I couldn’t breathe, my gut screamed at me to get some help. And when he would choke and gag on any food that didn’t smell or look just right, my gut begged me to see an expert.
A parent knows when their child needs help. I know when my kids have a fever because their hands and tummies get hot, not their foreheads. I know when my kids are hungry because they start arguing with each other. And I knew that my son had sensory issues and I needed to get him evaluated.
I understand that this is a difficult time for you. You’re juggling work and home life and trying to keep your family together. It’s hard to admit that your child is having difficulties with any part of their lives. And the words “sensory processing disorder”…it sounds very scary.
I know that because it was scary to me too. It took everything I had as a parent to take that step to get my son evaluated by early intervention. I cried every time I filled out a form or answered a questionnaire. But as his mother, I had to do it. My mother’s intuition was telling me that he needed me to. If he was sick, I would take him to a doctor to help him get better. I had to look at the evaluation that same way. That I would do anything – anything – to make life easier for my child.
Are you still sitting down? Good. You deserve it.
Finally, I want you to know that you are not alone. When I started this process, I thought I was the only mother with a child like mine. I know now that not only am I not alone, but I don’t have to do it alone. There are support groups and websites and Facebook pages just for parents like us.
And me. I’m here for you. Always. Because you’re my friend and I want to help.
“A mother
With her intuition
Will know just what to do
A mother has a feeling
She pays special attention
If someone is concealing
If someone’s playing tricks
She rubs and scrubs and scours the secrets
Until the answer clicks” – Mother’s Intuition by Carly Simon
Comments
Ellie
Thanks for your post. I wish someone had told me 8 years ago when I started this journey that I wasn’t alone. So glad I found support now, and so thankful for encouragement from people I’ve never even met, like you!
Hartley Steiner
We all start out feeling alone, huh? It amazes me – with the rates of sensory issues in kids being as high as 1 in 6 the LAST THING we should feel is alone!
Happy to have you here Ellie!
sandra
WOW~! so awesome, brought tears to my eyes.
Mom2Kaia
I am sending this RIGHT NOW to a friend who has just received a diagnosis for her son. Beautiful introduction, Alysia and a perfect expression of how we need to trust our gut feeling and get our children the help they need!
Spectrummy Mummy
I’m still learning how to breathe, but I’m very glad to be here and know that I’m not alone. Thank you.
Tiffany LaGrange
Great post! Could have used it when my son was diagnosed! It’s going to help a lot of mommies out. Good job!
MySoCalledSensoryLife
This post gave me goosebumps. THANK YOU.
niksmom
What a great intro. So glad to know you and to know I’m not alone!
Theresa
brought me to tears too. I needed this today!
Jesse
Thank-you, right now I feel like the only one trying to help my son and not getting very far. Thanks for the support.
Meghan Davis
Wow, I needed this today. I am getting my son evaluated tomorrow and I am a little nervous. Breathing is hard right now. thank you for sharing.
Hartley Steiner
Welcome Meghan! Please let us know how things go for you tomorrow! We’ll be here for you.
Patty
Awesome post, as usual, Alysia! I cannot tell you how much I appreciate the support of people like you and Hartley and all the great people I’m meeting here on SPDBN! I don’t know how I would have made it through this journey of ours!
A.
Crying, you don’t know how badly I needed to read this this morning. Trying to figure this all out while trying to hold my family together. . . thank you! Time to call early intervention, I’m so afraid that I can’t do more. And my brother in law’s wedding was one of the hardest days of my life.
Thank you again for writing this.
Hartley Steiner
A – thank you for your comment! Let us know how it goes with EI!
Allie
That feeling is all too familiar!
Julie
Very well written and oh so very true. I heard it all… “he’s just being a boy, boys talk later than girls, he’s just ignoring you” and the list goes on and on. I’ve learned my lesson. To tell with everyone else’s opinion – I’m his mother and I know when something is off, when he needs help. I refuse to allow anyone to stand in my way any longer. What’s the worse thing that will happen? I’ll be wrong?
Heather Finnegan
I still feel alone. We have had a diagnosis for 1 year. My son was 4 1/2. My mission is to educate all of those I come across. I am a former teacher with an Early Childhood background….I knew something was wrong by 15 months and everyone, including my son’s pediatrician, dismissed me. A part of me was afraid to find out what was wrong too. Once the label was there it would always be there. Of course I could kick myself now for not being more persistent when he was younger! He has made unbelievable progress in the last year with OT. We currently pay out of pocket for help as our previous insurance only paid for 20 visits, my husband lost his job, forcing me to put our kids on medicaid, and our son is highly qualified academically, and does not have enough of a delay anymore to qualify for services through the school district. He doesn’t have anything co-morbidly, and therefore doesn’t qualify for an IEP
We just have to keep trudging along and doing what we know is best for our kids!
Hartley Steiner
Hang in there Heather! You are a great mom and you will make it through!
Y'vonne
Thank you Alysia. I needed this today. It’s been a hard time lately. Yesterday I spent crying at OT with my son.
Hartley Steiner
Y’vonne – I have cried at more therapy/OT/SLP appointments than I care to admit!! You are NOT alone! : )
"street sweeper" mom
beautiful as always
this post is also a great tool to share with friends “conversationally” that you see who may be struggling but “not there yet” to help nudge them to see it is alright to just get tests, it will make you feel better too. I am more confident in my mother’s intuition now because I have two boys relying on it.
Katie
Wonder article. Thank you for sharing. How many times have we heard “he’s just being a boy” or “he is just a busy guy.” It is nice to be validated and hear someone else say “wow, ok, yes, he is different isn’t he!”
Cari
I could have written that! I don’t feel alone as much anymore, but I am constantly defending my boys. I love to educate about SPD, but, instead, I find myself explaining that it’s not something I did or didn’t do to screw them up. Or worse, that I’m making it up to explain away their behavior.
Ana
Beautifully written. Thank you. Took me back 2 years ago when my son was first diagnosed. wow. flood of memories and emotions…Thank you all for being here and sharing your stories.
Cindy
I really needed this, the past week with my son (3yrs) has been very difficult. We know that he is SPD (sensory seeking)and just having a very seeking week. Dyspraxia, CP, and ASD have all been brought up to us, we are still waiting for a definite diagnosis. Some days it is just so hard, I feel alone, like no one I know quite “gets it”. Thank You for this post, it came just at the right time.
Hartley Steiner
You are NOT alone Cindy!! I promise – there is a list of women here who definitely GET IT. : )
Sonita
Oh how I needed this post today!
I’ve been putting off making my son an appointment until today when my mother, for the upteenth-millionth time, blew me off and used ‘that eye-rolling tone’ with me when I said something about my son’s issues and why don’t I just ‘make him’ do this or that…
Because I can’t just MAKE HIM, he has ISSUES! He’s not being a BRAT he’s just being HIMSELF! He’s just WIRED different! IT’S JUST HOW HE IS!
But I know she won’t believe me until a doctor puts a label on it, so today I called as soon as I got off the phone with her.
I called a local pediatric neurologist to see if they could recommend a pediatrician that knew about SPD-they gave me two names and I called and made and appoint with one and called to have his PCP changed to that doctor….so here I go down that same road!
Thanks so much for writing this post and thank you for posting it today of all days!
Hartley Steiner
Welcome to the journey Sonita!
Let us know how it goes, OK?
ChildLedHomeschool
I will.
Colleen
This was simply beautiful! I knew something was wrong but deep down feared I hadn’t parented him as well as I had my first born. I took him to an ENT at 18 mos. thinking he was hard of hearing, by 2 we were in speech & by 2.5 in an OT’s office. He turns 3 in 2 weeks and has made so much progress but it’s very scary & exhausting being his mommy many days! I’m glad to hear I’m not the only one who cries at OT. It’s so great to know we are never alone!
Kay
Thank you for making people aware! You just described my son and our journey over the last few years.
Pilar
I’d sob if I wasn’t so tired
…or SO HAPPY I was actually sitting down!
My son is 4, and was just diagnosed a week ago. Our first IEP meeting is next week. I’d feel daunted but for all the puzzle-parts that are FINALLY clicking together– most especially this blog, and this community. THANK YOU.
Alysia
To everyone who commented here, I thank you. Your comments have touched my heart. I meant it when I said you are not alone, that we are all here to support you and understand you. For two years I thought it was something that I had done wrong with my son. It took meeting other parents with kids JUST LIKE MINE for me to know that I didn’t cause this. This was just how my son was. And you know what? He’s a pretty cool kid, quirks and all.
To those of you who said that you are all alone, know that even though you might not know someone live in person who understands, there’s a whole community out here that does. Reach out and connect with us. Without this online group of amazing people, I’d be lost. I’ve never met them, but they are my lifeline when things get tough. Use us. Please.
ohana
Thanks for this post, too Alysia. Other than the therapists and other individuals working with my son, I’ve found no one else. For the most part, the parents aren’t receptive to discussion — I don’t know if it’s our area or what, but with the exception of one mom I haven’t found anyone to discuss this stuff with personally. Thank you for helping me find a community….
“Without this online group of amazing people, I’d be lost. I’ve never met them, but they are my lifeline when things get tough.” We’ve got my son working with experts. Now it’s time to find the support for me
I feel so warm in my heart this morning 
Susan
Beautifully written. I didn’t know that what my son did wasn’t normal. He was my first and was my normal. But, the speech therapist that was working with him saw things. It was her mommy experience, having a daughter with SPD, that got us on the track to OT. I’ll never forget her. And for those who are early on in the journey, it does get better. It’s 6 years since my son’s diagnosis, and life is much better (not a breeze, but definitely worlds better).
Pam
WOW….this hit so close to home today.
It’s so frustrating trying to get others to admit that something is wrong when clearly there is. My son has been medically diagnosed as being on the spectrum but the social worker at his school told me today that he’s ‘quirky and immature not ASD’. GRRRRR!!!!
Fiona
Absolutely beautiful Alysia,
As always xx
Kim
It’s amazing how many tears we all shed. Tears of grief when we come to understand what exactly is challenging our children, tears of frustration when we struggle to understand how to help, exhausted tears when we feel we have nothing more to give, angry tears when our friends and family refuse to understand, and yes-even tears of joy when we look at our beautiful, resolute children and realise just how far they have come.
ohana
Kim, your comments touched my heart. tears, tears, tears, AND MORE tears! So much of what I feel for EXACTLY the same reasons!
And as for the tears of joy — Mine are often mixed with the tears of frustration. I can be at my wits end, exhausted beyond belief and with no more ideas on how to help him….. and then just look at his cute little face and love him even more and just wishing that everyone could see past his difficulties and see the warm loving bright little child that is there and soooooooo needs love and understanding. He’s come so far, but oddly enough, it’s made him the boy I love and wouldn’t change for the world…
pat butler
I don’t blog, but I read. Someone I love very much has SPD, and I learn. With every blog I read, I learn more about SPD. This site makes that process much easier. Though, at the end of each story, I often have tears in my eyes, I have also shared the joy of a good day with incredible writers. Keep blogging and I’ll keep learning.
Dana
Thank you! This came at the perfect time. My son was diagnosed 7 years ago and back then I felt alone. The last 3-4 years have been really good but we are headed back to an OT evaluation to learn new self-regulation tricks tomorrow because he seems to be struggling again and the meltdowns are increasing and I want to find out why. Is it just age, a new phase in life? I don’t know but like you said – mother’s intuition told me he needed more help again so we are going. This brought tears to my eyes because I feel like I’m taking 2 steps back but know it’s for HIM – it’s all for him to be happier again!
BellybumMom
You know, I thought I was on top of everything. I mean, I run support groups for this stuff! We’ve known, since my oldest (now 7) was 18 mo’s old, that all was ‘not right’ with him. I mean, it was so obvious with him! First diagnosed as Autistic then PDD-NOS then SPD now PDD-NOS, SPD, Anxiety & Regulatory Disorders, Apraxia & ADHD. After a long, very rough 6 years he’s finally doing great! All the while…my younger son (now 6) crept under the radar. How could I have missed this!? It wasn’t until this past summer that we finally, reluctantly, took him to be assessed. I always just thought he was shy, copying bad behaviors, jealous and vying for attention. Then his diagnoses came back… Aspergers, SPD, Anxiety & Regulatory Disorders, Apraxia & ADHD. The worst part is, I just don’t understand him. He is so different than his brother! I honestly don’t even know where to start. We completed his IEP—but they don’t ‘get’ him either and it’s not working. School is bad, he is sad and I feel like I’m back at square one again
Ellie
We missed it too, with our oldest child (just diagnosed with a whole list of things at 8 years old). She just “coped” so well, that her quirks weren’t as overwhelming to me. But apparently they were to her. And while the guilt is overwhelming at times, I am so glad that now we know, and can start helping her too. Hang in there and keep doing the best you can…no one can ask for anything more!
ohana
I’m a brand new member trying to navigate this site. Yours is the first posting I’ve successfully been able to see… What a great intro to this site!
Your posting resonates with me. My situation is a little different in that my older son is the one about whom I always knew something was different. I, too, heard all the naysayers suggesting I was uptight and that “boys will be boys,” and that they “just didn’t see it!” That being the case, I initially went to therapy to make sure *I* was okay since I was the only one who “saw” his quirks.
Well, lo and behold, 2 YEARS later we finally are on the right path with him after a SPD diagnosis! I think what finally prompted my husband to get on board was watching our younger child follow in big brother’s steps and parenting being so.entirely.different with our easy-going compliant second child. Through the development of the second child my husband really began to see on his own how *different* our elder child is…
We’re not 100% “there” (whatever that means~lol!) but day-to-day living is MUCH more tolerable now that he’s in therapy.
So glad to have found this group
Diane
What a wonderful, welcoming post. Thanks so much for writing this and sharing.
BellybumMom
Thank you Alysia for your beautiful post and for all of the wonderful & heartfelt comments from everyone else!!! It truly does help to know that I am not alone (though it often feels that way). I can relate to so many of your comments. Heather—I have been right there with you for the past 2 years. To others, yes, it is hard to keep “trudging” and “trusting intuition” sometimes. We all find ourselves in different places of “need” at different times. Right now, for me—knowing I caught one, completely missed the next until he was 6, and now see my 3 year old who likes to seek stimi by banging her head…well, I’m faltering. However, I’m also so appreciative right now to have you all. To read your stories and words of encouragement and know that you ‘get it.’ My friend wrote to me the other day “G_d will never give you more than you can handle,” and while I’m not religious, it made me think…no matter how hard it has ever been, I have always been ultimately able to ‘handle it.’ The key has been this…finding support and allowing people to help. Thank you! Thank you Alysia for starting this wonderful discussion.
Shalene
Thanks for this! I’m just now on the path to getting an actual diagnosis. I am certain that my daughter has SPD, but worry about being dismissed; simply because I and everyone around us has dismissed it for so long already. My daughter is 5 and has always been different. I always thought it SO WEIRD that she would scream in terror at the vacuum cleaner, and other things even as a baby. I always thought she would just grow out of it… Well, she has learned how not to scream in terror, but she does still hate loud rumbly noises, and will run and hide if she can. Anyway, that’s just one area, and I’m so glad to finally be figuring out that there is something going on with my bright wonderful girl. (And I’m keeping a close eye on my younger son. Because after doing much research, I also think my oldest daughter- who is now 18- may also have it.) Anyway, now that I’ve shared a novel with you, thanks again!! I’m loving all the posts ad resources you share.
Alysia
I’m glad you shared – that was the hope when I wrote the post! Trust your instincts. I’m learning something new everyday – keep plugging away and asking the questions. I’m so glad you stopped to write here!
Shalene
Well my worries about being dismissed were unfounded. Went to the pediatrician today to get a referral to an OT, and he actually agreed with me that he thinks I definitely have reason to be looking into an SPD diagnosis.
That was such a relief. Also checking for hearing loss in my son to determine if that is the reason for some of his delays, or if maybe he too, has some processing problems. I’m so glad I found you guys! I have a feeling I’ll be spending alot of time around here. 
Alysia
way to trust your instincts Shalene! Great job advocating for your son! So glad you were here, and hopefully we’ll be hearing about your journey more. Welcome!
Hartley Steiner
You can find all of our icons being held by “Otto” our octopus mascot (in the header!)! Glad to have you here!!
Jakesmom
This is my first post here and wanted to share that I too was in tears reading this. It is nice to know there are people out there who “get it”. It is very hard not to feel alone as we fight what feels like the most tremendous battle. Then I look at my sweet little boy and realize he is fighting hardest of all to make sense of his world. Thank you all for being here!
Alysia
Welcome! I’m so glad you found us here too. We all “get it” here. It is a tremendous battle, but we’ll get through it together. For your sweet boy and mine.
M
thank you so much for sharing your story. It seems like a lot of us go through similar situations! Family members or friends telling us we are crazy for thinking something is different about our kids. Good for you for doing something. I started early intervention for my son at about 15 months old and I’m so glad I did:)
Alysia
That’s the beauty of this site. Being able to share our stories and know that we’re not alone. So glad early intervention worked for you! It’s hard to tune everyone else out, but sometimes you have to go with what you know is right.
A.
I needed to read this again (and again, and again). Perfectly put, thank you SO much.
Alysia
thank you.
adriana silva
Thank you soooo much for this post. I teared up reading this…I have a had a gut feeling with my son since he was an infant…I had dismissed my own intuitions…this post has touched me…thank you..I think I will be reading it from time to time when things get a little hectic.
Stacey Robinson
This is an awesome post! I don’t know how many days/nights I’ve cried because I thought no one else understands! I’m glad to know that there are others who know exactly what it’s like! Thank you for your understanding and empathy; we all need it!
Kiley
Thank you…
Jules
Thank you so much for this post!! I am currently playing the waiting game to get my son an appt with the OT. We have been on a waiting list for a few weeks, and I am thinking about going elsewhere. I have known that something was different with my son for a very long time. He is my first boy, so for a while I somewhat bought in to everyone telling me he is just “all boy” with non stop energy. Sometimes even though you have that intuition, its easier to smile and nod at people when they say it, but inside you are constantly mentally putting pieces together to see what the answer is…I am anxiously awaiting our eval, not because I want him to have a disorder, but because I am so excited to have an official diagnosis. It’s amazing how much having someone confirm your suspicions and intuition, and not just get the “just all boy” answer. Thanks again so much for this post!!
Kelly
Great post, wish I had read something like this years ago. We have struggled for so long, being dismissed, dismissing it ourselves, not wanting a label, believing we just needed to do this or do that and it would all go away.
All four of our boys have issues and they are so different in their needs, it’s overwhelming. Our 6yr old had an eval. last week, but we don’t have any results yet. The 11yr old goes this coming week and the other two are still on the waiting list. I’m a bit anxious about what we will hear, but mostly relieved and very hopeful we can finally get some help. I don’t have anyone in real life to share or vent or get advice from and it’s hard. I’m so thankful for so many of you that are writing here (and sharing on your own blogs).
christi
it was my gut feeling that got me going, the hardest part is finding the right people to talk to. Especially when your child care providers sit you down and tell you your child is disruptive to a degree that we will have to ask you to leave. The care providers don’t give you any references but they sure make you feel like its your fault AFTER trying all sorts of different methods that work for you at home and the provider just says “I have 24 other kids that I need to watch” basically telling you that they don’t have a desire to help/work with you and your child. I knew something was wrong when he was 3 and went to 3 doctors and a child behavior specialist. It was a google search that lead me to the right direction. Go with your gut, your the parent, you know your child the best. Since OT has begun at the age of 7 if seen a huge improvement in him within a few months. Our home life is getting better everyday and it made me cry when the Occupational Therapist said “this is not your fault.”
christi
finding the right fit with care givers and schools is the most challenging. We you do find the right fit its like a weights lifted.
Improve Your Intuition
This was a great post with important insight, I’m not alone. Our mother knows the best for us, even I’m not yet a mother but I know my mom cares for me so much. Thank you sharing this one.
apronpocket
Thank you so much for this post, it brought tears to my eyes – in a good way. We have just been gifted with a diagnosis of SPD and I have been feeling all of those things you mentioned as well as a variety of others. I consider the diagnosis a gift because now my intuition has been vindicated. I can find answers, my darling boy can get the tools he needs to be happy and that makes a huge difference. When he turned to me after our final psych report and said “Well, now I know I’m not just bad.” it made all the frustration, worry and tears worth it. I am so glad I found this network, thank you from the bottom of my heart!
Jenny from the Block
This post is from over a year ago, but I am so glad I read it. I felt just like that…scared, alone, crying, knowing something was wrong, overwhelmed. I feel so lucky to have found support and resources and others like me so early on in this journey. What a difference it has made!
Alysia
Welcome
we’re glad you’re here with us.
Courtney
I’m so glad I can come here and feel like I’m not a crazy person. My 5 yo daughter was different from day 1, but I thought it was me, like everyone led me to believe – until my son was born when she was 3 and I KNEW something was not just different with my daughter and we needed help. We went from therapist to OT to speech and on with an SPD diagnosis at age 4. Part of the blessing (but problem too) is that she is fine in school and holds it together, and actually excels – until she gets home. We “completed” a stint of OT in Feb and were on a great roll. Now we are suddenly back to square one, meltdowns several times per day and I feel I’m right back where I started. What everyone else dubs a “rough patch” feels like much more. Thanks for posting and being out there so I feel sane and connected somewhere!
bcclethemom
My exact feelings put into words! Thanks a lot for writing this. This is indeed mother’s intuition at work. I just knew that something was different about my first son (he is 4 yrs old now) and i could not put a finger on it. Not until i have come across sensory processing disorder. My son has not been diagnosed (and yes, there’s a part of me that’s just scared) but his actions are better explained by SPD. Im relieved to find out about it… and at the same time stressed out to make sure that I do everything I can to give him the support and help he needs. Its tough to explain to people around me that i feel there’s something different because they too believe that my son is just being a normal little boy and that he would outgrow it. Thanks again for putting into words what moms like me must be feeling.
Fran Rubio Katz
I feel so glad I am here! I am craving this support. I have been feeling very alone
Kathy Yellen
Thank you! It is amazing how much comfort there is in knowing I’m not alone. It doesn’t take anything away from the difficulties. It just helps knowing there are other people who really know what it’s like on all levels.