My 4 year old son was just diagnosed with SPD

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My 4 year old son was just diagnosed with SPD

by Melissa Copestake
(Philadelphia, PA)

For the past three years I have had a very hard time understanding why my son does some of the things that he does. The daycare he attends has been wanting me to get help for him for the past few years.

As a mother, I had a very hard time accepting the fact that maybe something was wrong and was just in denial. I regret that, because i wish i could have gotten him help sooner. I feel like we just keep getting pushed to the next person and that is even more frustrating.

My son is very intelligent and started speaking very well at a young age. My son is very hyper, aggressive and angry for no reason. He is touchy, constantly touching everything and everyone.

Everything I try to do for him is extremely hard whether it is making sure he eats, bathing him, brushing his teeth and especially bed time. He gets frustrated very easily and acts out in anyway he can.

I don't think he realizes how strong he is but at least once a day he is in the office at the daycare for getting physical with another child. He doesn't sit still for long and prefers rough play almost all the time. He even tends to try to hurt himself whether it is throwing himself into someone or smacking himself in the face. In the past month, he started putting everything in his mouth, eats his shirt and tends to lick everything that he can.

I think he understands something is not right. He tells me his brain is stupid and says sometimes that he can not control himself. He sometimes get depressed for no reason and will begin crying out of nowhere and sometimes he will begin to laugh for no apparent reason.

He tends to be very loud and will scream or shout out things at inappropriate times for no apparent reason.

He is a very loving child and enjoys playing with other kids but sometimes, well most of the time kids have a hard time being around him because of the way he acts and they can not understand that.

He now hates to go to school and begs me everyday not to send him. He thinks about it all the time by asking me over and over again "Do I have school tomorrow?" to the point where it makes him very anxious. I have been with this center for over 11 years with my older son and I know his teachers and they care a lot about my child. He just doesn't want to be there anymore.

His teachers tell me even though he is very intelligent, he will have a hard time because he will not sit still for story time or learning time and he is constantly getting into things.

I just want to get help for my son but unfortunately is seems like everywhere I go I am getting sent somewhere else. I took him to ELWYN for an evaluation where he was diagnosed with SPD they sent me to SPIN (Special People in the Northeast) where they send an occupational therapist to the daycare for 40 mins once a week. My son needs more than this.

Tomorrow night I have a appt. with a therapist at the Growth Opportunity Center but this has been ongoing for the past year and i don't seem to be getting anywhere.

My biggest fear is next year he will go to kindergarten and will be "labeled" by both teachers and peers and I only want the best for my son. If i can get him help now, maybe the struggle won't be so bad.

If anyone has any information that can help me - my e-mail address is melissa.copestake@courts.phila.gov.

Thanks so much.

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My 4 year old son was just diagnosed with SPD

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Dec 14, 2009
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help me!
by: Cyndi M

I used to think my son was just very affectionate, but now he is 4 and his constant need to touch/hold/rub/pet me is driving me crazy. He is intelligent and funny and just a joy to be around, but he won't focus on direction or correction at all. I hate that his need to touch me has made me so irritable and it's gotten to the point where I have put him in time out for doing it. He has a type of obsession with the feel of skin. I had to take him out of pre K because once he likes a kid he does the same thing to them, and if it's a girl I get a note home. God forbid a foot be exposed... he will rub his face all over them, no joke. What can I do?

Aug 29, 2009
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you are me last year
by: Anonymous

Seriously! My son just started kindergarten. Day one, he wouldn't stay in the classroom. Day two, wouldn't stop talking in a screaming voice. Day three, kept trying to take his clothes off. Day four, kept hitting others and himself. Day five, blissfully uneventful. Get your child prepared to be labeled. Its okay to be weird. It is not okay to be mean, disrespectful. Its okay to be different. It is not okay to be dirty. Dont forget to label other kids too ie. Robbie is Hoodie boy, or Kevin is long hair boy, or Stacey is laughing girl. Labels can be an okay thing.

When we went to kindergarten orientation I took a copy of this checklist to her and explained the best I could to the teacher. We got real lucky. This teacher looked it over and said, "you know... I could probably use this for a few other kids in my class." My little man has labeled his teacher "Fuzzy hair smart lady".

Aug 28, 2009
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Your son and mine too
by: stephanie

I have read many message boards an stories from exhausted parents your story is a carbon copy of my own. In fact,If my hubby were here to read this I think his jaw would drop.

My four yr old is completely irrational. angry,difficult and sometimes destructive. Every single morning is a battle.From eating breakfast to going to using the bathroom it's constant turmoil in my home.

I had him evaluated at 3 as Fl. Dept of Ed. has a life saving program for difficult toddlers. The school psychologist will not make the official Dx because in the long run, they try to place the least severe children in basic ed by 1st or second grade. We as parents want that but what we don't know can hurt our children. I have been through this with my 12 yr old.I know all of their tricks. I have also realized that my children have many issues that my own troubled siblings have.

This is a life long situation.I have done counseling,medication,social skills groups,OT I also tried helping my son make and keep friends. It's exhausting and overwhelming.

I want you to know that early intervention is the key but my two boys will always need some type of support or help. Children that are angry are usually frustrated and that's what causes their anger. I have had different DX from different Docs but the truth is my sons have genetic behavioral problems. It's very clear to us now and I am trying everything to nip things in the bud but believe me your child may still need support long after his early intervention. Don't deny him help from the school cause later down the road he may struggle like mine and it's harder to get the help once they are older and already in basic ed.

Many parents must hire lawyers to fight for their children to get the support they need.It doesn't mean they must be in a special ed class either,they can still have an IEP and attend regular basic ed. I wish someone told me all of this tears ago but you have the info now so get the ball rolling with your schools district about their early intervention plans. Sometimes they will not inform you so you will have to be your child advocate. Their budgets are being cut alot so they aren't exactly screening kids like they used to back in the 90s.

My sons are very intelligent and my four yr old began speaking very well at 2 so It's not that they can;t learn but their emotional problems get in the way and that is why people grow up to be dysfunctional and many end up in jail and on drugs. This happened to my brothers and one has an IQ of 142. Don't let another day go by...Schools are required to help even if it's not a learning disorder.

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Aug 28, 2009
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Submitted by: stephanie

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I have read many message boards an stories from exhausted parents your story is a carbon copy of my own. In fact,If my hubby were here to read this I think his jaw would drop. My four yr old is completely irrational. angry,difficult and sometimes destructive. Every single morning is a battle.From eating breakfast to going to using the bathroom it's constant turmoil in my home. I had him evaluated at 3 as Fl. Dept of Ed. has a life saving program for difficult toddlers. The school psychologist will not make the official Dx because in the long run, they try to place the least severe children in basic ed by 1st or second grade. We as parents want that but what we don't know can hurt our children. I have been through this with my 12 yr old.I know all of their tricks. I have also realized that my children have many issues that my own troubled siblings have. This is a life long situation.I have done counseling,medication,social skills groups,OT I also tried helping my son make and keep friends. It's exhausting and overwhelming. I want you to know that early intervention is the key but my two boys will always need some type of support or help. Children that are angry are usually frustrated and that's what causes their anger. I have had different DX from different Docs but the truth is my sons have genetic behavioral problems. It's very clear to us now and I am trying everything to nip things in the bud but believe me your child may still need support long after his early intervention. Don't deny him help from the school cause later down the road he may struggle like mine and it's harder to get the help once they are older and already in basic ed. Many parents must hire lawyers to fight for their children to get the support they need.It doesn't mean they must be in a special ed class either,they can still have an IEP and attend regular basic ed. I wish someone told me all of this tears ago but you have the info now so get the ball rolling with your schools district about their early intervention plans. Sometimes they will not inform you so you will have to be your child advocate. Their budgets are being cut alot so they aren't exactly screening kids like they used to back in the 90s. My sons are very intelligent and my four yr old began speaking very well at 2 so It's not that they can;t learn but their emotional problems get in the way and that is why people grow up to be dysfunctional and many end up in jail and on drugs. This happened to my brothers and one has an IQ of 142. Don't let another day go by...Schools are required to help even if it's not a learning disorder.

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Jan 20, 2009
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PLEASE try brushing
by: Amanda

Please anyone who is at the end of their rope, find a doctor to write you a order for you to a have a sensory evaluation by a Occupational Therapist. The gentlemen who comented on here with the 4 year old, by Jim. That was my story word for word, it's unreal to hear how other parents are going through the same situations.

But so true, I encourage Jim and anyone else to continue with the therapy to set up the right sensory diet or to go get an evaluation done. I am a Occupational Therapy Assistant, but mostly work with the elder population so I know of sensory issues, but not enough.

I took my 4 year old to get a evaluation and we started the deep brushing.. oh my, such a change, not cured, but it has just helped enough to get through the mornings.

She has tried on clothes that she never would have dreamed of, she never used to button her pants because she said they were too loose (when in fact it surely didn't seem that way), now she is buttoning them at least 50-75% of the time. She has worn a couple of sweaters which she NEVER would before, it has just really helped enough so far to make our mornings less stressful and I haven't went to work crying for about a month.

I let her pick out her own clothes, we were down to only 4 shirts she would wear, now she is trying others, some days she's ok with some and other days she may go back to the 4 shirts. We are still working on shoes, socks have become much easier, shoes she has only one pair she likes but she won't fasten the velcro straps... but it's so much easier to deal with some rather than all that was going on.

So please give OT a try, they can help you find things that will help your child so that the little things don't interfere with their daily routine.

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Jan 20, 2009
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Submitted by: Amanda

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Please anyone who is at the end of their rope, find a doctor to write you a order for you to a have a sensory evaluation by a Occupational Therapist. The gentlemen who comented on here with the 4 year old, by Jim. That was my story word for word, it's unreal to hear how other parents are going through the same situations. But so true, I encourage Jim and anyone else to continue with the therapy to set up the right sensory diet or to go get an evaluation done. I am a Occupational Therapy Assistant, but mostly work with the elder population so I know of sensory issues, but not enough. I took my 4 year old to get a evaluation and we started the deep brushing.. oh my, such a change, not cured, but it has just helped enough to get through the mornings. She has tried on clothes that she never would have dreamed of, she never used to button her pants because she said they were too loose (when in fact it surely didn't seem that way), now she is buttoning them at least 50-75% of the time. She has worn a couple of sweaters which she NEVER would before, it has just really helped enough so far to make our mornings less stressful and I haven't went to work crying for about a month. I let her pick out her own clothes, we were down to only 4 shirts she would wear, now she is trying others, some days she's ok with some and other days she may go back to the 4 shirts. We are still working on shoes, socks have become much easier, shoes she has only one pair she likes but she won't fasten the velcro straps... but it's so much easier to deal with some rather than all that was going on. So please give OT a try, they can help you find things that will help your child so that the little things don't interfere with their daily routine.

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Jan 14, 2009
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Fight response
by: Sara

Hello-

My four year old son was recently diagnosed with SPD, Anxiety Disorder with Panic Attacks, Distorted Eating Behavior, and now probable ADHD (which to be quite honest after reading all the stories on this website appear to be SPD.) He too is a very angry, aggressive little boy. We started noticing something was very different about him in early infancy.

Now as a little boy who can communicate, my son begs us to eat whenever he is frustrated or upset (which in his world is nearly all the time.) When I would bring up the topic of an eating disorder to his pediatrician I would simply get "we don't diagnose eating disorders in children so young." Denying him the ability to "cope" (my son's only self soothing or coping skill) often sends him into a fight response that will result in physical aggression. The frustrations escalate so quickly I find it hard to believe he consciously makes a choice to become aggressive. He has no coping skills, no way to self soothe other than eating and at 76 pounds it has to stop.

We attend weekly appointments with a psychologist who tries to teach him coping and self soothing skills. I don't know if it's his age or the SPD but when he spends 85% of his day frustrated and angry he won't grasp onto what we're teaching. It seems to make him more frustrated when we try to talk to him when he's escalating. He is so out of control he just lashes out at anyone who nears him.

We started OT and when doing the Heavy Work program my sweet boy is there with that smile that used to light up the room. For 20 minutes a week my eyes are filled with tears of joy and my heart which normally aches for his frustration and aggression feels the day it did when he came into this world.

He has many sensitivities, and is often consumed with anger. We're just getting started ourselves in his diagnoses, treatment and making transformations in our life to lessen his frustration level.

What I have learned is he has two responses to his inability to cope with anything... fight or flight. When the fight response comes into factor normally you would use your coping skills to work your way through it and because he can't grasp those skills we're left with him to fight, even those who love him immensely. I hope I was able to help but as I said we're just starting out. Please keep in touch or e-mail me with any questions.
sara.dickmann@yahoo.com

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Jan 14, 2009
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Submitted by: Sara

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Hello- My four year old son was recently diagnosed with SPD, Anxiety Disorder with Panic Attacks, Distorted Eating Behavior, and now probable ADHD (which to be quite honest after reading all the stories on this website appear to be SPD.) He too is a very angry, aggressive little boy. We started noticing something was very different about him in early infancy. Now as a little boy who can communicate, my son begs us to eat whenever he is frustrated or upset (which in his world is nearly all the time.) When I would bring up the topic of an eating disorder to his pediatrician I would simply get "we don't diagnose eating disorders in children so young." Denying him the ability to "cope" (my son's only self soothing or coping skill) often sends him into a fight response that will result in physical aggression. The frustrations escalate so quickly I find it hard to believe he consciously makes a choice to become aggressive. He has no coping skills, no way to self soothe other than eating and at 76 pounds it has to stop. We attend weekly appointments with a psychologist who tries to teach him coping and self soothing skills. I don't know if it's his age or the SPD but when he spends 85% of his day frustrated and angry he won't grasp onto what we're teaching. It seems to make him more frustrated when we try to talk to him when he's escalating. He is so out of control he just lashes out at anyone who nears him. We started OT and when doing the Heavy Work program my sweet boy is there with that smile that used to light up the room. For 20 minutes a week my eyes are filled with tears of joy and my heart which normally aches for his frustration and aggression feels the day it did when he came into this world. He has many sensitivities, and is often consumed with anger. We're just getting started ourselves in his diagnoses, treatment and making transformations in our life to lessen his frustration level. What I have learned is he has two responses to his inability to cope with anything... fight or flight. When the fight response comes into factor normally you would use your coping skills to work your way through it and because he can't grasp those skills we're left with him to fight, even those who love him immensely. I hope I was able to help but as I said we're just starting out. Please keep in touch or e-mail me with any questions. sara.dickmann@yahoo.com

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Dec 16, 2008
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Our 4 year old shows signs of SPD too
by: Jim

Our 4 year old son has been showing signs of SPD since about the age of 3. It first started with the need for his shoes to be excessively tight-his feet sometimes go numb. He also likes his pants tight. I recently bought a belt for his pants - he tightens it so tight I think he's going to cut off the circulation in his legs.

He has difficulty wearing long sleeve shirts, but will if we force him to. He has only 3 shirts (all short sleeve) and 3 pairs of pants that he will wear. Once we find a pair he'll wear, we buy every color. Getting ready for school can take 1-2 hours.

What's odd is, in the right circumstance he will wear clothing that I think (if he had SPD), would be unbearable. When we play hockey, he insists on wearing a hockey jersey (which is not a soft comfortable shirt) - but when we stop playing, off it comes. We were skiing, and he had no problem wearing ski pants, jacket and boots - although the base layer is a tight pair of long underwear, so that may help.

Summer is our best time of year as he will wear shorts, t-shirt and flip-flops from May-Sep. but come Fall, we start to stress.

For food, he is a very basic eater. Bland is the word - no party in your mouth food. He eats, carrots, broccoli, coli-flower, peas and corn-on the cob; chicken fingers, fish sticks, pizza (cheese only); apples, raspberries, water melon. He will only eat dry cereal (honey nut cheerios), so I give him a glass of milk with them. We also give him a nutritional shake each morning (Nutrimeal from www.usana.com).

He loves loud music, particularly "awesome guitar music" - his words. I imagine him as an adult wearing those tight jeans with pencil thin legs - Mick Jagger like.

We seem to be managing. I've lost my temper on several occasions, and felt like crap for several days. I realize that he is suffering, but it sometimes feels like just a control issue, and I'm determined to win! The days I have most success is when I have the time and patience to sit down and talk to him. I noticed one person said that their child told them their "brain wasn't working right". My son told me once "my brain is making me do things I don't want to do" - very insightful for a 4 year old, but a schock to hear! We try to tell him, when things are getting very irrational, that he needs to listen to his heart and do what it tells him - this works with moderate success.

We've taken him to an OT once, but don't believe he officially diagnosed him. When we go through the SPD checklist, there are 11 items we can check off.

We are hopeful that once he is old enough, he will be able to rationalize his sensory issues and either ignore or avoid them.

I'm not sure if he has SPD - he certainly has symptoms. Are there any adults out there with SPD? How are they coping? What is life like as an adult? Are they able to wear normal clothes, eat Indian, Thai, or Japanese food?

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Dec 16, 2008
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Submitted by: Jim

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Our 4 year old son has been showing signs of SPD since about the age of 3. It first started with the need for his shoes to be excessively tight-his feet sometimes go numb. He also likes his pants tight. I recently bought a belt for his pants - he tightens it so tight I think he's going to cut off the circulation in his legs. He has difficulty wearing long sleeve shirts, but will if we force him to. He has only 3 shirts (all short sleeve) and 3 pairs of pants that he will wear. Once we find a pair he'll wear, we buy every color. Getting ready for school can take 1-2 hours. What's odd is, in the right circumstance he will wear clothing that I think (if he had SPD), would be unbearable. When we play hockey, he insists on wearing a hockey jersey (which is not a soft comfortable shirt) - but when we stop playing, off it comes. We were skiing, and he had no problem wearing ski pants, jacket and boots - although the base layer is a tight pair of long underwear, so that may help. Summer is our best time of year as he will wear shorts, t-shirt and flip-flops from May-Sep. but come Fall, we start to stress. For food, he is a very basic eater. Bland is the word - no party in your mouth food. He eats, carrots, broccoli, coli-flower, peas and corn-on the cob; chicken fingers, fish sticks, pizza (cheese only); apples, raspberries, water melon. He will only eat dry cereal (honey nut cheerios), so I give him a glass of milk with them. We also give him a nutritional shake each morning (Nutrimeal from www.usana.com). He loves loud music, particularly "awesome guitar music" - his words. I imagine him as an adult wearing those tight jeans with pencil thin legs - Mick Jagger like. We seem to be managing. I've lost my temper on several occasions, and felt like crap for several days. I realize that he is suffering, but it sometimes feels like just a control issue, and I'm determined to win! The days I have most success is when I have the time and patience to sit down and talk to him. I noticed one person said that their child told them their "brain wasn't working right". My son told me once "my brain is making me do things I don't want to do" - very insightful for a 4 year old, but a schock to hear! We try to tell him, when things are getting very irrational, that he needs to listen to his heart and do what it tells him - this works with moderate success. We've taken him to an OT once, but don't believe he officially diagnosed him. When we go through the SPD checklist, there are 11 items we can check off. We are hopeful that once he is old enough, he will be able to rationalize his sensory issues and either ignore or avoid them. I'm not sure if he has SPD - he certainly has symptoms. Are there any adults out there with SPD? How are they coping? What is life like as an adult? Are they able to wear normal clothes, eat Indian, Thai, or Japanese food?

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Dec 15, 2008
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John Heinz???
by: Gina

Is there a John Heinz or Allied Rehabilitation Center in your area? My son is 3 and 1/2 and shares many of your son's behaviors. He goes to John Heinz in Hazleton, PA and they are very good with him. Is there also an Early Intervention agency you can contact?

Dec 15, 2008
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Don't give up!
by: Anonymous

Your totally right, your son needs for occupational therapy with someone knowledgeable with sensory disorder. Seek out and EasterSeals near your area, I am sure they can help you... In the mean time don't stop trying, you will eventually find the right help.

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My 4 year old son was just diagnosed with SPD

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My 4 year old son was just diagnosed with SPD