Gabriel was at speech therapy on Friday and his therapist was asking him to name things in certain categories. She asked him to name something large.
He replied, “uh … a Large Diet Dr. Pepper.”
my thoughts on raising kids, homeschooling, working, and life in general
04 May 2008 2 Comments
in Gabriel's journey, Ha., momblog, Sensory/Speech Disorders
Gabriel was at speech therapy on Friday and his therapist was asking him to name things in certain categories. She asked him to name something large.
He replied, “uh … a Large Diet Dr. Pepper.”
29 Apr 2008 Leave a Comment
in Gabriel's journey, Sensory/Speech Disorders Tags: autism, disability, external hydrocephaly, motor delay, preschooler, sensory integration dysfunction, sensory processing disorder, speech delay
We’ve had a good month or so with Gabriel. Things seem to be getting better discipline-wise, although he still has a bad day every now and then.
(a quick aside – if you’re just joining us, you can see the whole saga here.)
Anyway, OT is going super-well. His therapist recently told me that she’s going to graduate him from the program in the next 3 to 6 months. It’s absolutely amazing how much he’s progressed with OT in the last 5 months. He couldn’t cut a straight line (or a crooked line, for that matter), and now he can cut circles. He’s consistently holding his crayons and pencils much better. His gross motor skills seem to be improving, as well.
His speech therapy is going swimmingly as well. He is mostly understandable now by anyone. He still has many things that he mispronounces, but he’s getting better all the time.
The thing that we’re working on with his speech therapist right now is concepts – sequencing, answering ‘W’ (who, what, where, when, why) questions, finding what’s wrong with a picture, etc. Jay and I are working diligently every day with him to increase his understanding in these areas. He’s getting better, but there’s still room for improvement.
01 Apr 2008 2 Comments
in Gabriel's journey, Sensory/Speech Disorders Tags: sensory integration dysfunction, sensory processing disorder, SID, SPD
Gabriel’s sensory-related/behavioral issues go on, and they’re frustratingly inconsistent and unpredictable. One day, Gabriel is the sweetest, most cooperative and thoughtful child you could imagine. The next day something will set him off and makes everyone around him miserable.
He is progressing very well in OT, though – both his fine and gross motor skills have improved amazingly over the last 6 months. He’s still behind age level on some things, though – like standing stiff when he throws a ball, instead of putting his whole body into it; he still tends to hold a crayon in his fist unless corrected, and he colors by moving his entire arm (elbow down, I mean) back and forth, instead of moving his fingers and wrist; he still can’t spit very well (so we’re still using toddler toothpaste); he still can’t do a situp without using his arms for assistance … there’s more but that’s all I can remember off the top of my head. He does seem to be mostly over his food texture issues, although he’s still pretty picky.
He is highly distractable and gets off-task frequently; I have to constantly guide him when we’re doing schoolwork. For instance, today, I had the kids coloring every object on a certain page blue. Every noise or motion Mikaela made, he stopped what he was doing and looked at her. And instead of going right back to what he was doing, he would just sit there like he forgot what he was working on. I had to keep reminding him, “finish coloring,” to which he’d reply, “Oh!”
This has me wondering if he’s always going to be a student who struggles (way too early to tell for sure) … and it just makes me want to homeschool all the more, so he can have good, frequent one-on-one interaction. I know I’m getting ahead of myself, but I just want to be prepared for whatever.
He also still seems overwhelmed around a lot of other kids. Today I took the kids to the large, 3-story play area at ToysRUs. There were about 12 other kids in the play structure, and they were all running around wildly. Every time one of them ran past him, he flinched and flattened himself against the nearest wall. Later, he was slowly trying to climb over a rope bridge, and kids kept running past him. Every time a kid would pass, he would stop moving. One kid after another ran past, and he finally said, “Oh! I’m never gonna get out!”
He still has trouble with instructions sometimes, usually when I’m asking him to go find something or bring me something. He also has a really hard time imitating body poses or facial expressions, which I know is related to his sensory issues (I forget what that’s called … something to do with motor planning and/or decreased body awareness.)
Every now and then, out of the blue, he will say, “I wuv you, mama.” I swear, that makes all of this nonsense just melt away.
27 Feb 2008 1 Comment
in Gabriel's journey, Sensory/Speech Disorders
Gabriel is really testing us lately. I’ve switched from making him go to his room as punishment to making him stand in the corner, and he absolutely hates it. He stood in the corner by the front door today and screamed like a crazy person for what seemed like 30 minutes but was probably only 5. The reason I put him in the corner was his response to my request to take his toys from the living room to his room: he charged at me with a nasty look on his face, intentionally pushing me. I mean, he didn’t really hurt me, but that’s not the point. He meant to.
I’ve always felt like we did a fairly good job on disciplining our kids, but I’m at a loss for what to do with Gabriel in situations like this. Don’t say he needs a good spanking; that’s the way I was raised in the good ol’ South (and it worked just fine on me), but his therapist says that kids like him really won’t benefit from physical punishment. Soooo … what now? I really haven’t had to discipline him much at all, because he’s always been a pretty compliant kid. But lately, he’s showing agression like I talked about earlier, and I don’t feel like I can just let that go … even if he is on the ‘slow’ side, I can’t let him think it’s OK to physically lash out at others. The corner seemed like a great idea, but is it healthy for me to let him sit there and scream hysterically? Not to mention it fries my nerves.
Advice? Leave a comment.
18 Feb 2008 Leave a Comment
in Gabriel's journey, momblog, Sensory/Speech Disorders Tags: Sensory Integration Disorder / Dysfunction
Lately Gabriel has been really defiant and mouthy and it’s driving me nuts. Consistent punishment seems to be having no effect.
Compounding my problems is the fact that Mikaela has figured out how to get a rise out of him. Gabriel seems to have no concept that people can lie … he takes everything at face value, very literally. Today Jay told Gabriel that the two of them were going to go out for haircuts. Gabriel was excited … he always likes spending time with his papa. But Mikaela got an evil grin on her face and said that she was the one going out with Jay, and that Gabriel would have to stay home. Of course, Gabriel started freaking out, screaming “No!” and starting to cry. Jay and I kept assuring Gabriel that he was going, but every time Mikaela said otherwise, he believed her and started having a come-apart.
I’m seeing a lot more meltdowns lately. Isn’t this supposed to get easier as they get older?!?!
I’ve read much about kids with SID having meltdowns when their routine or schedule is changed, or when having to transition from one daily activity or task to another. That doesn’t quite fit Gabriel – his meltdowns are the result of things not going the way he thinks they should. For instance, the other night, he and Mikaela were watching a movie in my bedroom while I was getting some work done. I kept hearing Gabriel scream and cry almost hysterically every time Mikaela left the room. I kept checking on him, and he told me each time “Mikaela no wanna go in there (out of the room he was in), she wanna watcha movie.” Every time, I told him ‘she can do what she wants, don’t worry about her, just watch the movie.’ It didn’t help. Every time she walked out of the room, he freaked out and started wailing.
Any other SID / SPD parents out there with suggestions on what I can do?
29 Jan 2008 Leave a Comment
in Gabriel's journey, Sensory/Speech Disorders Tags: SPD, speech delay
I’m always thrilled when Gabriel shows that he can reason correctly, even if it’s something that isn’t even up to par with the ‘norm’ for his age level (he’s 4 years and 3 months old).
This morning, Mikaela pointed to the fan, which I had just turned off but was still spinning. Mikaela said, “round and round! Faster and faster!”
Gabriel said, “no, it’s going sow-wee (slowly).”
28 Jan 2008 Leave a Comment
in Gabriel's journey, Sensory/Speech Disorders Tags: SID, SPD
So, I started out trying to post regularly about Gabriel and his disorders (external hydrocephaly, verbal apraxia/speech delay, SPD), then I got slammed with a big work assignment. So I’m going to start again, trying to post regularly on this topic.
This weekend, I took a short break and joined Jay, his sister Stephanie and her son Austin, plus my two kids at the park. This is the same park/playground where Gabriel had a recent episode. This time wasn’t so bad for Gabriel, probably because the park was a lot less crowded. I did notice that when some older girls started screaming excitedly, he ducked his head and covered it with his arm – something he does when he’s frightened. I don’t really know what to do about that, as far as teaching him a coping mechanism to deal with surrounding chaos and loud, unexpected noises. Any SPD parents with ideas for me?
In brighter news, Gabriel’s OT says he’s “blossoming.” What a great word to hear from an occupational therapist. He really is making great strides in his fine and gross motor skills. He’s gone from barely being able to hold a pencil to drawing squares; he’s gone from not getting the concept of scissors to accurately (well, fairly accurately) cutting long strips of construction paper.
Gabriel’s speech therapy seems to be helping a tiny bit – but I can tell we’re in for the long haul. He really does try to repeat the words we give him, but his mouth just won’t cooperate. Hopefully with the combination of normal development (albeit delayed) and therapy, his speech will someday be “normal.”
11 Jan 2008 2 Comments
in Gabriel's journey, Sensory/Speech Disorders Tags: articulation disorder, speech delay, speech lesson, speech therapy
Gabriel went to his first speech therapy (well, the first in a while) appointment this week. The therapist said he tried really hard and sent us home with homework. We’re supposed to work on the “ch” sound, in the initial, middle and final positions.
While on the subject, I am all for any kind of benificial therapy for kids with SID/SPD, Autism, speech delays or related conditions. I also know that a lot of insurance companies don’t exactly make access to these services easy or affordable for many. So, if I ever think I can post any techniques that the therapists teach me, I will. I don’t think that finding help online is a substitution for actual therapy, but it’s better than nothing if you can’t afford it. I’m not a Speech-Language Pathologist, but I feel like I’m a pretty well-educated parent (well, on this topic, anyway), so I’ll tell you what works for me.
So, with that in mind, I’m posting a list of “ch” words that you can work with your child on. I’ll post more speech activities and resources in the future.
Starting out: tell your child that you’re going to play a “train” game. Move around the room, making a “ch, ch, ch” sound.
Next, tell your child you’re going to see if they can say some words with the “ch” sound in it. Say one of the words on the list below, over-emphasizing the “ch” sound, and then say it again, “normally.” Then ask your child if he/she can say the word again, with you. If the child doesn’t get it, say “let’s try that again” – but don’t go over each word too many times or the child will become frustrated and/or discouraged.
Initial (starting) “ch”-sound words:
cheerleader
cheesecake
champ
chickadee
chaps
chest
chariot
chipmunk
chestnuts
chart
chicken
charcoal
chalk
chili
chopsticks
Medial (middle) “ch”-sound words:
pitchfork
coaches
watchdog
benches
hatchet
pitcher
question
inchworm
teacher
orchard
witches
poncho
stretcher
creature
wheelchair
Final (ending) “ch”-sound words:
pooch
rich
butterscotch
batch
beach
roach
patch
lunch
peach
perch
ranch
bleach
sandwich
ostrich
08 Jan 2008 Leave a Comment
in Gabriel's journey, Sensory/Speech Disorders
I’ve been doing a lot of Gabriel posts lately!
All this writing has me remembering things.
I asked Jay last night if we should go back to a pediatric neurologist and/or developmental pediatrician to have him re-evaluated for Autism. He’s been doing an awful lot of walking in small circles. He seems to do it more often when he’s upset or confused. He also does this monkey-looking thing on his hands and knees, propelling himself around in a circle, but he does that when he’s excited/hyper.
He gets overwhelmed at the grocery store sometimes, and I’ve seen him rock back and forth, flap his hands and make strange noises with his mouth, but these behaviors are less frequent.
He’s also having behavorial issues. Every time we tell him to go to his room to play, or to go to bed, he goes in there and wails inconsolably for a long time, punctuating it with screams. Many times, when I get onto him (even very mildly), he covers up his eyes. Maybe that’s not such a big deal, but it seems like he’s a little old to be going through tantrums again.
The one thing that seems to be improving is his reasoning/observation skills. He’s watching Diego as I type this, and they’re looking for a hawk. This has been his running commentary: “Look mama, they both fying!” [two people were in airplanes] “That ey-go!” [Diego] “He fying! He hafta find a hawk mama! The hawk all gone.”
08 Jan 2008 1 Comment
in Gabriel's journey, Sensory/Speech Disorders
Saturday, we took the kids to the park on a beautifully sunny day. We had to leave early, though, because Gabriel was having a come-apart. He was literally clinging to me, hiding his eyes and shaking, muttering something about the “monster people.”
The park was awfully crowded, but I was surprised. I’ve never had this kind of response out of him before.
After we questioned him, we figured out he was scared of one guy with long hair and a beard (I guess that’s understandable). He also said something about people with color on their faces. I wondered for a minute if he was referring to African-Americans and Hispanics, but after further questioning, he said something about people getting “all pink” on their faces. I guess he was talking about people getting red in the face from being overheated? I don’t know, but the whole thing was a little disturbing.
08 Jan 2008 1 Comment
in Gabriel's journey, health, Sensory/Speech Disorders Tags: dyspraxia, external hydrocephaly, sensory integration dysfunction, sensory processing disorder, speech delay, tactile defensiveness
I’ve been wanting to link all my blog entries about Gabriel’s ordeal together, and I finally did so today – I created a category called “Gabriel’s Journey.”
If you’re just tuning in, Gabriel is my 4-year-old son (he was born 10/03) who has recently been diagnosed with Sensory Processing Disorder, also known as Sensory Integration Dysfunction. The diagnosis has been a long time coming, ever since I first noticed his speech delay as an toddler, and later, when he had a lot of quirks and aversions, as well as fine- and gross-motor-skill delays. (An aside: Gabriel has had a very large head from early infancy, and was diagnosed with benign external hydrocephaly, which could be a contributing factor to his SID, speech and motor delays.)
SPD/SID in a nutshell: your senses – taste, touch, smell, sight, hearing, balance – take in information, which in a normal person, is processed correctly by the brain, which triggers an appropriate response. With SPD/SID, the sensory messages get garbled, leading to confusion.
For example, if a person’s sense of balance isn’t correctly communicating with the brain, the person may be very clumsy, even to the point of falling off their chair when sitting.
If a person’s hearing isn’t correctly processing messages, they may have a very hard time interpreting and acting on verbal instructions.
If a person’s touch receptors aren’t communicating properly with the brain, the person may be extremely over- or under-sensitive to touch. An over-sensitive child may get severely agitated or upset when the wind blows his hair. An under-sensitive child may fall down and cut their leg badly, and not even seem to notice.
Here’s the thing about SID/SPD: there are so many combinations of sensory issues that each individual child may have, it seems like no two cases are exactly alike. A child with this affliction may have problems with just one sense, with several senses, or even all of them.
Further, the severity of the problems can vary widely. One child with mild SID/SPD issues may be able to get through life just fine, while a child with severe SID/SPD might not be able to get through any routine task without problems.
Gabriel’s condition has manifested itself in a variety of ways. He has a subtype of SID/SPD called dyspraxia. Dyspraxia is poor motor planning/lack of coordination. His brain can’t always make his muscles do what he wants them to do. The biggest problem with that for him has been the oral dyspraxia, which has led to a severe speech delay. Dyspraxia has also led to fine- and gross-motor-skill delays: he has very poor hand strength and can’t hold a crayon or pencil properly for long, he has overall poor muscle tone and tires out easily, etc.
He also has another subtype of SID/SPD called Tactile Defensiveness. TD is over-responsiveness to touch. For instance, he has food texture aversions, which often makes him gag. He gets upset when water is poured over his head. He hates touching anything icky, slimy, or messy. He has actually gotten a lot better in this area, but it’s still somewhat of a problem, especially the food aversions.
Anyway, Gabriel is currently in Occupational Therapy to strenghten his motor skills, and he’s about to re-start speech therapy, as well. (He’s been in and out of speech programs since he was 2.)
If you’re a parent in the same boat, there’s a lot of great resources out there, from books to support groups to Web sites. Good luck and keep checking back; I’ll keep posting.
Signs and Symptoms of Sensory Processing Disorder
Sensory Processing Disorder Resource Center
04 Jan 2008 Leave a Comment
in Gabriel's journey, momblog, Sensory/Speech Disorders
Last night, Gabriel was asking for something we couldn’t understand. Bunny pickles? Bunny circles? Brown circles? Brown suckers? We guessed on and on.
OH, a brownie with sprinkles! We finally said. “Yes!” He screamed.
30 Dec 2007 Leave a Comment
in boys, Gabriel's journey, momblog, Sensory/Speech Disorders
Gabriel is fascinated with two things right now: pirates and robots.
His favorite movies right now are the Pirates of the Caribbean trilogy, Transformers (which he calls ‘big wobots’) and the animated movie, Robots (which he calls ‘tiny wobots’).
Amazingly, Gabriel will sit through an entire movie. He gets really engrossed in it. I know, I know, I probably shouldn’t be letting him watch movies at all … but it’s one of the few things that will calm him down from his usual bouncing off the walls – and sometimes mommy needs some quiet time so she doesn’t end up at the funny farm. Lesser of two evils, I think.
30 Nov 2007 Leave a Comment
in boys, Gabriel's journey, Sensory/Speech Disorders
Me: Gabriel, you’re a funny guy.
Gabriel: Yeah, Mama, I know.
Me: (Sarcastically) Are you modest?
Gabriel: No, I Gabriel!
15 Nov 2007 Leave a Comment
in Gabriel's journey, momblog, Sensory/Speech Disorders Tags: motor skills, occupational therapy, sensory integration disorder, sensory processing dysfunction, tactile defensiveness
Sorry, I am too lazy to think of a headline right now. Maybe I should go to sleep (snort).
Well, I’m having fun with Gabriel’s at-home therapy, and he’s mostly having fun with it, too. I’ve been racking my brain to come up with activities to strengthen both his fine and gross motor skills, as well as activities that will de-sensitize him somewhat to “icky” textures. I’m also working with him to boost both his balance and general endurance.
So, to cover all those things, I’ve been having him finger-paint, put piles of buttons into a piggy bank, pick up cotton balls with ice tongs and transfer them from one bowl to another, play with a craft beading kit, play with Play-doh, walk on a strip of masking tape on the carpet as if it were a tightrope, balance on a giant balance ball, play tug-of-war with me, walk on his hands while I hold his feet (wheelbarrow), jump on an indoor trampoline, hop on one foot … okay, I think you get the idea. He’s having a grand old time. If you have any more ideas that are in this vein, please share!
Before I started trying to think of therapeutic things for Gabriel to do, I looked at several online catalogues catering to kids with special needs. I was flabbergasted at the prices they charge for most of their products. Just absolutely ripping people off. Like this balance trainer you could buy for $159, or you could buy something roughly equivalent at Target for $99. It pays to shop around.
13 Nov 2007 1 Comment
in Gabriel's journey, health, momblog, Sensory/Speech Disorders Tags: external hydrocephaly, pediatric neurological problems, sensory integration disorder, sensory integration dysfunction, sensory processing disorder, speech delay
Well, it’s been the better part of a week since Gabriel was diagnosed with Sensory Integration Disorder. I’m still in my “information-seeking” mode – reading everything I can get my hands on so I can better understand this condition that’s affecting my son, and what kind of implications it has for his future.
Simultaneously, my doctor is switching me from one anti-depressant to another that will hopefully give me more energy and help with my ADD (well, I’ve never been formally diagnosed with ADD, but if you’ve ever had a conversation with me, you could probably vouch for the fact that it’s likely I have it.) In the meantime, I’m drug-free, letting my system rid itself of the previous drug before I start taking the new one. And BOY, what a time to stop taking my prozac. What’s interesting is the fact that I’m not very mood-swingy at all … just numb and foggy-brained about this whole Gabriel thing.
I know, I know… I KNOW I should count my blessings, and I do. Things could be so much worse … he could have cancer, or something equally as horrible. I thank God that he doesn’t. It’s just hard to wrap my brain around the fact that my precious baby son might have a hard time in life because he is “different” from the “norm.” I grew up socially awkward and I know first-hand how mean kids can be to children who are different.
My mom, who is really good about telling the brutal truth (although I’m sure she often bites her tongue), said something really nice that cheered me up, though. She told me that God knew what He was doing when He gave us Gabriel, and that we’re the best possible parents for him. I actually think that’s the nicest thing my mom ever said to me. Being a good mom to my kids is the most important thing to me in the world, and I don’t think anyone in my family has ever said anything like that before, so it really warmed my heart.
Anyway, please say a prayer for our family … for our collective sanity, and for wisdom as we try to figure out what’s best for Gabriel therapy/schooling-wise.
10 Nov 2007 3 Comments
in Gabriel's journey, health, momblog, Sensory/Speech Disorders Tags: external hydrocephaly, pediatric neurological problems, sensory integration dysfunction, sensory processing disorder, speech delay
My four-year-old son, Gabriel was recently diagnosed with a type of Sensory-Processing Disorder [SPD](also known as Sensory Integration Dysfunction [SID]) during a visit to an OT (Occupational Therapist).
We’ve known that something was amiss with Gabriel’s development for quite some time. At his two-month-old pediatrician appointment, the doctor measured his head and was alarmed at how much it had grown since his two-week-old visit. She sent us for a CAT scan, and apparently that was inconclusive, so we were sent for an MRI. The neurologist who gave us the results said that he had external hydrocephalus (or external hydrocephaly? I’ve never been able to figure out what the difference is) – which is an abnormally large collection of cerebrospinal fluid (CSF) found on the outside of the brain. The neurologist said that his head would continue to enlarge but that he would “grow into it” around school age (I guess he meant 6 or so?). He also mentioned that he could have motor delays.
I went back home and assumed everything would be fine with Gabriel. He was a handful from the time we brought him home until he was about 4 months old, thanks to acid reflux and a SEVERE gag reflex – he spit up constantly. When he was a bit older, Cheerios or anything solid or lumpy (like Stage 3 baby food, which contains small chunks of solid food) would make him projectile-vomit. He really couldn’t tolerate dry cereal or any finger foods until he was a year old. Today he is extremely picky and still has a bad gag reflex, which can be extremely frustrating. Certain textures seem to set him off. Anyway – all these years, I’ve been concerned, but have ultimately dismissed the food texture/gagging issues as pickiness/over-sensitivity. Everyone always told me that he’d grow out of it.
Another area I started becoming concerned with Gabriel about when he was a young baby was his language – or his lack thereof. He didn’t babble much at all. Maybe a coo here or there, but he definitely babbled less than other babies his age. As he grew, it became very clear that he was lagging behind his peers in their use of language. I would work with him, trying to drill words into his head, but he just seemed unable to make his mouth form the sounds. Everyone told me that he was a boy, and boys developed more slowly than girls. Even the pediatrician thought he’d grow out of it. But I kept having nagging doubts.
Another thing I’d noticed about Gabriel is that he hates getting his hands and feet messy. If his hands get dirty with food, paint, or markers, he will ball his fists up until he can wash his hands. He hates getting messy hands and will cry until they are clean.
He also hates having his hair washed or getting water in his face. I mean, HATES it and will scream like I’m trying to kill him. He also dislikes having his nails clipped and will cry every time I do it.
So, all of these things have been going on for awhile but I hadn’t linked them together in my head … I just thought he was a sensitive child. And possibly slow. At 4, he still has trouble getting dressed, eating with a spoon, and holding a pencil correctly. He had trouble riding a tricycle just a year ago (at 3), and still has trouble throwing balls. And the potty-training! He is just now finally potty-trained, at 4.
Believe it or not, all of these things are related to one another. The more I’ve read about SPD/SID, the brighter the light-bulb above my head has gotten. This is SPD/SID in a nutshell: his central nervous system doesn’t work correctly, so when one of his five senses (hearing, smell, touch, vision, taste) takes in a message, his brain may not interpret it correctly. This is the thing, though: no two kids with SPD/SID are alike. The symptoms of this syndrome vary greatly in intensity, as do the symptoms themselves.
An example – one child may have auditory processing disorder, one type of Sensory Processing Disorder. This child will hear verbal instructions but his/her brain will often not be able to interpret that message correctly or completely. Confusion ensues. Can you imagine how hard school would be for this child?
Other children have tactile defensiveness (Gabriel does, to a degree). Textures may bother them, and a gentle touch might feel like a punch. Their touch-receptors aren’t transmitting the correct message to the brain (or rather, the brain isn’t interpreting the transmitted message correctly … I’m not sure which is the case).
A third child may have problems with every single one of his senses, and it may severely hinder his everyday life.
Anyway, some children with SPD/SID have mild problems, others are severe. The results of these jumbled “sense”-messages can mean delays in gross and fine motor skills, inability to follow directions, social awkwardness and a host of other things.
We’re still making sense of all this. I’m scouring the Web and have just finished reading the ‘bible’ of SPD/SID, “The Out-of-Sync Child.” From what I’ve learned so far, this is how I think this syndrome is affecting Gabriel:
Wow. My brain is exhausted.
The one thing I don’t know, though, is how/if the external hydrocephalus is connected to all of this.
But back to the symptoms – I didn’t give you an all-encompassing list of Gabriel’s problems, because this blog post is long enough already. Suffice it to say, I’ve done my homework and I am convinced this diagnosis is correct. If you are a parent of a child with a speech delay, SPD/SID or external hydrocephalus (or you suspect that your child may have these types of issues), email me and we can talk at length. For more information:
SENSORY PROCESSING DISORDER RESOURCES (I’ll add more soon!)
List of books and videos about SPD
Signs and Symptoms of Sensory Processing Disorder/Sensory Integration Disorder
Sensory Processing Disorder Foundation
Sensory Integration Education and Research Foundation
Sensory Processing Disorder Resource Center
Tactile Defensiveness/Sensory Defensiveness
Oral Defensiveness / Picky Eating
Update: For all the blog entries relating to Gabriel’s external hydrocephaly, SPD/SID, Speech delay, etc. click on Gabriel’s Journey.
31 Oct 2007 Leave a Comment
in boys, Gabriel's journey, Sensory/Speech Disorders Tags: external hydrocephaly, pediatric neurological problems, sensory integration disorder, sensory integration dysfunction, sensory processing disorder
My son is finally, officially, potty-trained. It only took 4 years.
29 Jul 2007 3 Comments
in family, Gabriel's journey, momblog, our first home, parenting, Sensory/Speech Disorders, weather
I am gearing up to home-school the kids this year. I want to start when the public schools start, but we are still trying to figure out where/when/if to move, and I want to be settled before starting.
I have been accumulating lots of material and finding lots of great resources on the web. But I’ll expound on that in another post.
More on moving: Jay and I looked at our lease and figured out that we need to figure out what we’re doing in the next 30 days, so we can give 30 days’ notice and be out by the end of our lease Sept. 30. I’m not normally so commitment-phobic, but this decision has my stomach in knots. We can’t find anything I like in our price range. And by “like” I mean, “not a total piece of crap.” I’m not being super-picky at all.
Say a prayer that we can find a decent place in a decent neighborhood … man, this has been such a long journey!
In other news, my 17-year-old niece is coming in for a short visit tomorrow. I’m excited about her coming, but I hope we don’t bore her to death.
It’s storming again here (right now). All people can talk about here is the crazy amount of rain we continue to get. At least it keeps everything nice and green!
Oh! I almost forgot. I went into a new children’s consignment store here this weekend and wound up having a long conversation with the owner. I forget how we got on the subject, but after hearing that her 4-year-old daughter has autism, I confessed that I suspect my son may possibly have a high-functioning form of autism. The woman chided me for stalling and said that I need to have him evaluated by a pediatric neurologist. I guess I do, but every time I gear up to make the appointment, he does something that makes me think maybe he’s catching up and doing fine. Then I go hear other kids his age talk and interact with each other and it makes me think, he is NOT fine, and I need to do something. His ‘symptoms’ include a speech delay, odd mannerisms, texture aversion and extreme pickiness with food, an obession with lining up/ordering things, and the fact that he won’t potty-train. Among other things.
This is such a gut-wrenching thing. It’s not that I would ever love him any less if he was diagnosed with autism or anything else, but as his mother who loves him dearly, I don’t want him to have to deal with a lifetime of difficulty from being “different.” Not that the problem doesn’t exist just because I’m in denial. It’s just hard to face.
27 Jul 2007 3 Comments
in Gabriel's journey, momblog, Sensory/Speech Disorders Tags: food aversions
Gabriel has always been a picky eater. The only things he reliably eats are pop tarts, cereal and crackers. I can usually get him to eat fruit with some prodding. Meat is iffy … one day he’ll devour it and the next he’ll only take two bites.
I’ve tried a variety of foods with him, but it’s a hit or a miss as to whether he’ll actually eat it. And more often than not, he won’t.
Before I had kids I wondered what the fuss was about when I heard people having similar conversations. ‘Just tell him to eat it or go to bed hungry,’ I thought to myself. HA. Kids will call your bluff on that one every time.
Seriously, this is getting so old. I’m torn between being stern about it (I want him to eat what the rest of the family is eating and not expect me to prepare a special meal for him), and giving in and letting him eat whatever he wants. The latter option is what I usually wind up caving in and doing, because he is on the skinny side.
I will say, I’ve found some success recently with Juicy Juice’s fruit/veggie juice. At least he’s getting SOMETHING akin to vegetables that way.
Thankfully, Mikaela is not following in his footsteps … she’s definitely more gastronomically adventuresome. Jay fixed a spicy king ranch chicken dish recently and she cleaned her plate and asked for more. She’s also got a taste for pickles – she’ll often follow me into the kitchen and ask with her sweetest voice, “want pickles peeese?”
Who could say no to that?
17 Jul 2007 Leave a Comment
in boys, Gabriel's journey, momblog, Sensory/Speech Disorders
After a shower the other day, Gabriel was attempting to put on some undies. After several attempts at putting them on the wrong way, he disgustedly threw them down, saying, “This unnerwear boken!”
24 May 2007 Leave a Comment
in Gabriel's journey, momblog, Sensory/Speech Disorders
The other day, Mikaela and I were in the kitchen. Suddenly, she darted off towards her room. Halfway there, she ran back to tell me “I be wite back!” Before running off again.
I carried Mikaela outside the other night to show her one of the little lizards living on our back porch. She pointed to it and exclaimed “fwog!” (Frog) Close, but not quite.
Today, Gabriel and I were in the car, headed to the library. When I told him where we were going, he said, “I no wan’ go bi-brary, mama! I wan’ go read book!”
Also on the way to the library, I overheard him singing “If you’re happy and you know it.” The lyrics were mostly unintelligible, but the tune was pretty dead-on. That kid’s going to be a musician.
Tonight while he was lying in bed, trying to think of an excuse to not sleep, he called me and said, “Mama, I tur-sty (thirsty). I have a cough” Followed by a very fake-sounding cough.
Well, bribery has paid off … Gabriel is doing VERY well with the potty training. Now if I could get him to do something other than peepee in the potty, we’d be golden.
17 May 2007 Leave a Comment
in Gabriel's journey, momblog, Sensory/Speech Disorders
Gabriel had just finished going potty today and ran off before I could get his pants back on him (yes, he still needs help getting dressed. Yes, I know he’s behind.)
So, he ran around half-dressed while I helped Mikaela on the potty. While I was in the bathroom with her, Gabriel walked by the door, scratching his butt with a plastic dinosaur. Kids think of interesting uses for everyday objects, don’t they?
That made me think – there’s no telling what they’ve done with those toys while I’ve had my head turned. I think I’ll go Lysol them now.
10 May 2007 1 Comment
in boys, Gabriel's journey, momblog, parenting, Sensory/Speech Disorders
My children continue to give me gray hair with their mispronounciations that sound like bad words.
Today, Mikaela tried to say clock. Let’s just say I’m not going to be talking about time again any time soon!
Gabriel made me laugh today. After he got out of preschool, I headed for the library so the kids could get some books. As we passed the local supermarket, Gabriel said “Goba – chew!” repeatedly.
At first, I had no idea what he was saying – Garbage Truck?
Then, I figured it out from the context, since we were driving right by it.
“Oh, GROCERY STORE?”
“Yeah, Goba-chew!” He replied.
I said, “baby, why do you want to go to the grocery store?”
“Because I firsty (thirsty)!”
That’s an odd thing I’ve recognized about his speech. He tends to end things he can’t pronounce with a “jew” or a “chew” sound, even if it’s not even remotely close to the way the word is supposed to sound. Helicopter is “ha-chew-chew.” Tricycle is “Tri-jew.” I’m sure there’s more, but those are the first things that come to mind.
I feel like a detective trying to figure out what he’s saying to me every day. Oh, I hope he’s “caught up” by the time he starts first grade.
22 Mar 2007 Leave a Comment
in Gabriel's journey, News, Sensory/Speech Disorders Tags: speech delay
Gabriel has been in a speech therapy preschool program for five months now. It’s provided free through the local school district, in a classroom at the local elementary school. He goes Tuesday and Thursday mornings for two hours each day. The program is specifically for kids with speech delays – and it’s been a Godsend.
His speech is still pretty severely delayed, but it’s definitely improving. He talks mostly in phrases and sentences now, although many words are still hard (or impossible) to understand. (He turned three in October, so he’s almost 3 1/2 now.)
Some examples: “I ready a-go” (I’m ready to go)
“No, dat Ge Ge’s” (no, that’s Gabriel’s)
“I paya moongh” (I’m playing in my room)
“Ge ge tummy hew” (Gabriel’s tummy hurts)
“Mama, I watching” (Mama, I’m watching [tv])
So, as you can see, he’s improving, but he’s still probably about a year behind his peers. The neurologist said he’d likely catch up by school age, but I can’t help but wonder if there isn’t something else we could do.
My remaining concerns about him include the fact that he’s STILL not potty-trained, his extreme pickiness about food, and his occasional inability to follow what I think are pretty basic directions (ie – put this on that table).
First off, I know boys are slower to potty-train. But he’s getting pretty old. He knows HOW, he just doesn’t want to. I’m all for waiting until a kid is ready, but frankly, I’m sick of paying for diapers.
The food pickiness is also a common concern with kids, but I wonder if it isn’t related to his texture aversion/gagging issues he had as a toddler? One doctor prescribed food texture therapy, and I laughed – but now I wish I’d heeded her advice.
Re: the directions thing, it’s so strange – most of the time, he seems to understand on an age-appropriate level, but sometimes, he scares me. I’ll tell him something pretty basic and understandable, like “pick that chip up off the floor” and he will look at me like I’m speaking Greek.
I’m going to talk to his pediatrician soon to see if they think he needs to be re-evaluated. I just want to make sure I’m giving him the best start in life that I can. I don’t want him to struggle in school.
Update: to read all entries about Gabriel and his external hydrocephaly, speech delay, learning delay, sensory processing disorder / sensory integration disorder / sensory integration dysfunction, click on “Gabriel’s Journey.”
20 Mar 2007 Leave a Comment
in boys, Gabriel's journey, momblog, parenting, Sensory/Speech Disorders Tags: speech delay
Gabriel has been very sweet lately. He gives Jay and I kisses frequently, which always makes my day. He’s such a great helper, too… he will do almost anything I ask, replying, “awight!” (All right)
One sweet development lately have been his prayers. He will say them when prompted, but you never know what he’s going to say. He always remembers to pray for his family members, but I heard him thank God the other day for TV and milk. Well, at least we know what’s near and dear to his heart!
His language gets better steadily. I think it’s a combination of hearing Mikaela and his speech therapy class. From some reason, he doesn’t take instruction and/or correction from me well at all, so I don’t feel like I’ve been very instrumental in helping him to overcome his speech problems. Heaven knows, I’ve tried.
He does say a lot of things clearly, but some things take some time to figure out. Like last week, he said, “heh-chew-chew.” Jay and I scratched our heads and finally figured out from the context that he was saying “helicopter.” Goodness.
Jay and I have noticed something recently: not only can Gabriel keep a beat to music (he was born with rhythm – got that from Jay and not from me!), he can sing with almost perfect pitch. He may not have all the words to a song right, but he sure can hit the notes. American Idol 2021: Gabriel?
Another thing I’ve noticed recently is that he’s starting to stay in the lines a lot better when he colors. He loves to color, play with play-doh and paint. I need to scan and upload some of his artwork.
Update: to read all entries about Gabriel and his external hydrocephaly, speech delay, learning delay, sensory processing disorder / sensory integration disorder / sensory integration dysfunction, click on “Gabriel’s Journey.”
22 Feb 2007 1 Comment
in boys, Gabriel's journey, momblog, parenting, Sensory/Speech Disorders
Is my son handsome or what?
I admit, I might be biased. But seriously.
He had me in stitches a couple of days ago. We were on our way home from shopping and it was around lunchtime. He pipes up from the backseat: “WUNCH, mama! I be hungy!”
He also made me laugh the other night when he told me very seriously that he wanted “jooce NOT milk” in his cup.
We’re obviously still not “there” yet, but his communication skills are a lot better.
My favorite thing about him, though? The fact that he will come up, kiss me and say “I love mama!” unprompted. I wouldn’t trade that for a million bucks!!!
29 Nov 2006 Leave a Comment
in family, Gabriel's journey, momblog, parenting, Sensory/Speech Disorders
Parenthood is always full of surprises. Like a few minutes ago when I went to check on my daughter in her bed – I bent over to tuck the blanket around her and smelled something AWFUL. It was her beloved stuffed dog that she drags everywhere, even to the table, where she spills food all over it. Apparently doggie was due for a bath. I had to pry him away from her, and now he’s on the spin cycle as I type.
Another surprise today: my son decided to re-decorate the Christmas tree. He was supposed to be napping at the time and had apparently slipped out of his room, where he quietly took all the ornaments off the bottom 2/3 of the tree and stuck them into two clusters. Problem was, he dropped most of the wire hooks in the process, which we had to search for. Sigh.
There’s always plenty of laughs sprinkled through the frustrations, though. Jay and I have both smiled over Mikaela’s rendition of Old MacDonald: “and a moo moo, and a moo moo, E-I-E-I-O.” (that’s all she knows of it.)
She also made us giggle last night, when we’d just put her and Gabriel to bed. He was crying, and we heard her voice thunder from her room: “HUSH!”
He actually gave us a scare tonight. We found him in his room, bent partially over, with his hands over his eyes, and he would NOT take them off. He whimpered and trembled when we tried to pry his hands from his face. I still don’t know what his deal was, but he was acting fine when we put him to bed. Very strange.
Well, I can hear Mikaela crying in her room… must’ve woken and found doggie missing.
13 Oct 2006 Leave a Comment
in boys, family, Gabriel's journey, momblog, parenting, Sensory/Speech Disorders Tags: speech delay
So, Gabriel’s first day of preschool was yesterday. He’s going 4 hours a week to a special program through the public school district that’s specifically for kids with speech delays – specifically, articulation problems. This is a new program this year and the kids in his class have been progressing wonderfully, according to their teacher. There are only 4 other kids in Gabriel’s class – all boys – and there is one teacher and one helper. What a great teacher/student ratio!
The lead teacher is very young and enthusiastic. I’m so excited and thankful for this program. I hope it will be a wonderful and productive experience for my son.
03 Sep 2006 Leave a Comment
in family, Gabriel's journey, momblog, Sensory/Speech Disorders Tags: speech delay
Mikaela is now 18 months and Gabriel is 2 3/4.
Baby news: Mikaela is doing a lot more talking and Gabriel is going “pee pee in the boppy.”
Some of Mikaela’s recent phrases have been “mama juice” “wa juice” (want juice), “Tekshush, yay!” (rooting for the Texas Longhorns with her father), “dan shoo” (thank you). She loves bebes (babies), her stuffed cow (she says that correctly), and cats (which whe can also say correctly.) She points to pictures of the moo (moon) and shaaa (stars). She will also say “up” and “down.” Her favorite songs to sing are “Head, Shoulders, Knees and Toes” and the alphabet song, which she sings pretty darn well. I have to laugh every time she prounounces “w” – which comes out like “dubba-jew.”
We’re still having a time with Gabriel’s speech. Unfortunately, we almost seem to be going backwards, since he’s started to mumble a lot lately, making his already-hard-to-understand jabber even harder. I’m going to ask his speech therapist about it next time I see her. He is so funny, though …he is such a mother hen with Mikaela. When I hear him say “no, a-ga!” (that’s what he calls her), I generally know to come running because she’s gotten into something. Gabriel plays very well by himself for a lot of the day, mostly with his toy cars. He does let me read to him sometimes, although little sister usually gets jealous and tries to get him off my lap.
02 Aug 2006 1 Comment
in boys, family, Gabriel's journey, momblog, parenting, Sensory/Speech Disorders Tags: speech delay
My kids are learning more each new day. It’s so much fun to watch their little minds filling up with new information… and to hear the new words they say and the new connections they make.
A couple of days ago, Jay was cooking in the kitchen when Mikalea tried to come in. Jay tried to shove her back out the kitchen-gate-door so she wouldn’t get near the stove. She pushed him back (mind you, she’s only knee-high) and said “mooozh!” (move)
She was undoubtedly trying to get at the cabinet under the sink, which contains her beloved “bubbiezh” (bubbles).
Gabriel has started saying some new words as well – he’s now pointing out “Ernie” from Sesame Street (“Eenie!”)
Gabriel is also asking for “mo’ geees peee” (more juice, please) – this is major progress for him since it was less than a year ago that he finally said “mama” and “papa” for the first time.
28 Jul 2006 7 Comments
in boys, Gabriel's journey, Sensory/Speech Disorders Tags: external hydrocephaly, pediatric neurological problems, sensory integration disorder, sensory integration dysfunction, sensory processing disorder, speech delay
My son will be 3 on October 10. He’s one of the sweetest two-year-olds I’ve ever known; he really has a tender heart. He does have his moments, but I think most of his meltdowns come from his lack of ability to communicate effectively.
As you may know from my earlier posts, he has been diagnosed with an expressive speech delay – that means he can understand what I’m telling him, but he has a hard time talking. We don’t know why. He’s been seeing a speech therapist for about 6 months now and not a whole lot has changed. He is making steady improvement, but he’s still the better part of a year behind. More
22 Jun 2006 Leave a Comment
in family, Gabriel's journey, momblog, Sensory/Speech Disorders Tags: speech delay
My son loves pudding. For some strange reason, he calls it “be-la-la.”
Well, today he took his be-la-la and painted with it. Himself, the wall, the floor, the carpet, the lightswitch, my work papers, and the booster seat.
I guess it serves me right for not paying attention to him for 5 minutes while he was in the possession of food. Sigh.
I am on the hunt for an educational preschool for him – someone that will work with him on his speech. He was assessed about 9 months ago by a speech therapist and diagnosed with a severe expressive speech delay. That means he understands, but he can’t communicate with us very well. He’s gotten a lot better, though… he’s gone from finally saying mama and papa at 23 months to saying some sentences now that he’s 2 1/2. Some of his words are so way off, though – it just makes me scratch my head. His word for “star” is one – it sounds something like “gahhnn.” Moon is “moooo.” Mikaela is “a-ga.” And so on and so forth.
What’s sad is that we hear him use the same phrases over and over, and we can’t for the life of us understand what they are. Well, maybe one day it will occur to us from context – kind of like “be-la-la.”
Update: to read all entries about Gabriel’s external hydrocephaly, sensory integration disorder / sensory integration dysfunction / sensory processing disorder, speech delay and learning delay, click on “Gabriel’s Journey.”