Impulse control issues and sensory issues

[fadedbutterfly]

Im new here and I have a 20 month old daughter who was born with some challenges in life. She had surgery at 8 weeks old because of aspiration. She is failure to thrive and has a feeding tube (gtube) She was born with some physical defects as well. Were waiting to get genetic testing as soon as the insurance says its ok to run the test. Shes failure to thrive and is a crappy oral eater and drinker even though aspiration is no longer a risk. She weights only 18lbs at 20 months. She has a slight speech delay and what we believe is sensory processing disorder. She is a sensory seeker and is constantly licking things and eating/putting things in her mouth that are not food. She is light sensitive and very wind sensitive as well. She cannot ride in the car with the windows down. She puts her hands over her ears and face any time the wind is too much.
What has me more concerned is her lack of impulse control. She has "no fear" as my family says. She will climb anything she can possibly get on, tables, bookshelves, chairs, you name it she can climb it. Shes now started to jump after she climbs and that scares me so much. She has started biting people (just me actually so far but I don't doubt she would bite someone else) she used to just put blankets in her mouth and pull with her teeth but now its progressed. She hits her head on the floor multiple times, mostly when not able to communicate or when tired or frustrated but still enough that it scares me.
I feel like Im not able to control her. She is so young and Im not even sure if they can diagnose something but her actions are very "off" from what I know is "normal". I have a pretty hyperactive 4 year old but she always knew that she could hurt herself doing some of the things her sister does and she despite her activeness does have the ability to sit and watch a cartoon or something of the sort. My 20 month old is very different from her and I know that's a good thing but Im very scared shes going to get seriously hurt but Im also pretty sure her pediatrician will shove this under the rug like she has for a lot of my daughters other issues. What can I do to help my baby?

 

[pasajes4]

Find another dr. a.s.a.p. You need a pediatrician who specializes in developmental problems. You need help for yourself in order to cope with a very challenging task. tou need loving support from your spouse and other loved ones. You need respite care so you can get a break to charge your batteries on a regular basis.
HUGS

 

[BusynMember]

She's awfully young, but her early physical problems could mean genetic issues. She has a lot of autistic traits, but I don't think anybody will diagnose her with anything yet. But look up autism or, better yet, Pervasive Developmental Disorder (PDD)-not otherwise specified and see if it fits. Then hang on. There is help and you are asking for it early.

 

[slsh]

I second the recommendation for a developmental pediatrician. Preferably at a children's hospital or at least a university teaching hospital.

Some services you should already be receiving are (as a bare minimum) speech/occupational therapy, to deal with- oral motor issues thru your local birth-3 center, and regular followup with a pediatric dietitian.

Was the pregnancy/delivery pretty routine? Any family history of metabolic or genetic issues?

The combination of failure to thrive even with a g-tube, speech delay (though that isn't as alarming at 20 months because there's a wide range of "normal"), and physical defects screams that this is not a case that should be orchestrated by a regular pediatrician. He's there to take care of the routine stuff - shots, well baby checks, colds, etc. The other issues need to be addressed by staff who have training and *experience* with kiddos who are not doing things by the book. in my humble opinion, the only way you're going to get pointed in the right direction is by having a full developmental workup and then move on from there - genetics, endocrine issues, etc.

 

[fadedbutterfly]

Thank you all very much. I know shes young for a lot of this which is why I think Im getting questioned. People keep saying shes doing normal toddler stuff but it seems like so much more. Today was no exception. She had a bad morning to start since she had to have a test done on her kidneys. Found out she has kidney reflux which is a pretty common thing but is classified as kidney disease and is classified a congenital defect. Then after that horribly invasive test she had to have blood work done as well. She is seen at a large childrens hospital in our area but they are just now starting to really look into her health issues. Its gotten to the point where I have been blamed and even have had to go through a CPS investigation. Its been a very rocky road for sure. Then today on top of it was so bad and I wanted to cry right in the middle of walmart. She wanted me to pick her up and I cant shop and carry her and I insisted she sit in the cart and she threw a fit. She was kicking and hitting me and anything close to her, she was hitting her head and trying to jump out of the cart. Now tonight she has bitten her 4 year old sister and I multiple times. I cant tell if she does it for the reaction or to just do it. After getting yelled at for biting us she was using her teeth to pull on the fabric of my couch.
After all of that today shes finally winding down and falling asleep. Ive worried about autisum but she is very involved with her sister and family and makes eye contact and interacts a lot. I don't think she would score anything on their tests except what I believe is the sensory stuff which I know goes hand in hand. Im very worn out though and after today I really need help. I feel like Im her mom and I should be able to handle her but I cant even go to the grocery store alone with both kids and come out without tears. My aunt works home care for the disabled and Im thinking about looking into her come help me a few days a week for a few hours at the least. I feel like pulling my hair out most days.

 

[InsaneCdn]

Sigh.
Listen... ignore the "pictures" we all have in our heads about what "mom" is supposed to be like.
I know a LOT of families with supposedly neuro-typical kids who can't take two-under-age-5 grocery shopping.
Ya, it's worse with a difficult child...

For your own sanity, what happens if you research parenting techniques that work with Autism Spectrum Disorders (ASD) kids? Then, try them. Whether she has the diagnosis or not, often the approaches work with "differently-wired" kids.

If you can afford to pay for a bit of respite from your Aunt, I'd say go for it. Just make sure your approach and her approach in caring for your difficult child are the same (kids on the spectrum really need consistency) Even if she just watches the kids while you go grocery shopping!

 

[BusynMember]

Your child was born differently wired, and with some real physical problems to show it as well. She will likely get a diagnosis of some sort w hen she is older. Parents of kids who are differently wired, especially if it's the first child, think the child is acting out because it is our faults, but it isn't. They would act the same way in anyone else's home. Please don't let anyone tell you otherwise. They just don't understand. If your c hild is too difficult to shop with right now, try to shop w hen your husband is home (I did this with my son) and don't expose her to the incredible stimuli in Walmart. She sounds like she is very sensitive to noise, touch, probably chaos and a lot of people. That's why she gets so upset when she is in that environment, among, I'm sure, other reasons that you can't understand yet because she is so young.

Hold your chin up. You didn't do anything wrong. You have a difficult child and if others don't understand it...TOUGH!F!! *We* understand it!

 

[TeDo]

I am with the others. Find a developmental pediatrician fast. The biting sounds like it could be a sensory issue involving the need for oral stimulation. My difficult child 1 did stuff like that when he was younger (tg it didn't involve biting others). He would bite and chew on anything he could find. He's 15 now and still needs oral stimulation. Until he was old enough to chew gum, we had to find all kinds of appropriate things to chew on and teach him to chew on that (catching him chewing on wrong things and redirecting to right things). He also has noise and smell sensitivities. A GOOD occupational therapist can help with these issues.

You do need to do whatever you can to get some respite, even if it's window shopping in a mall or huge store. I am very proud of you for seeking help. She's still quite young but there is so much help out there if you know where to look and you've found the perfect place to get steered in the right direction. Please, please stick around. These parents have gotten me through some REALLY rough times and helped me keep my sanity. I ignore the "signs" because they were so subtle and listened to each and every professional I did see without questioning. Now, I wish I had questioned way back then. My son didn't get an accurate diagnosis until he was 12 years old. A lot of wasted years that we could have gotten help.

 

[fadedbutterfly]

We got so lucky today. Our early on worker called today and reminded me we had an appointment. So I spoke to her about everything going on and we went over kaydes sensory processing disorder (SPD) check list I filled out a few months ago. Se couldn't give me a diagnosis of course but were treating her like she has one, at least for sensory processing disorder (SPD). She has given me a ton of things to do with her, things to help her get the sensory she's looking for. Tubes to chew on, safe things she can jump on. Stuff like that. I know it won't fix things 100% but its being seen, and kayde did a great job modeling quite a few of her behaviors today for the worker. My next process is finding that developmental pediatrician, not sure how to go about doing that.

Also how do you get anything done if you cannot take your child out? Like tonight we went to the mall and had a day out with my mom and sister and kayde did well. She fought me when I made her sit anywhere confined but otherwise was not hitting or biting it anything. I'm not a single mom but with my husbands work schedule it almost like I am single. He's gone for work a lot, there are just times I have to go out on my own and day like today where my mom wants to see her grandchild. My mom lives quite a drive away and has ruhmatoid arthritis so we meet half way to make the drive easier on her since her joints bother her a lot if sitting too long.

Are there any good books on this stuff? I'm not very good at reading self help books but even if I can skim one to look for answers to what were dealing with when were dealing with it could be helpful.

 

[InsaneCdn]

Well... one common book that ends up getting recommended around here is "The Explosive Child" by Ross Greene. We found it helped us wrap our brains around the need to shift our basic premise in parenting: Most people believe that kids do well when they want to... This book helped us to think in terms of kids do well when they can.

We didn't implement much of the formal strategies, but the mind-set shift, and the lists (of all sorts of challenges that we adults might not notice) were well worth the book.

 

[fadedbutterfly]

Well I brought things up to her dr today (regular pediatrician) and was told she thinks she's acting this way because my daughter is teething. Some of this behavior has been going on or a while but the bitting is new so maybe it's true? I don't really know anymore. I guess the office has a psychologist who works with kids as young as K so the dr is going to talk to him and see if he feels he should evaluate her.

 

[InsaneCdn]

Teething might account for the chewing-on-things.
It does not account for the sensory issues, nor the slight speech delay, nor the fearless climbing, etc.

 

[hope9]

Hi there,
I'm new to this board, but i thought I'd respond to your post since my son has some of the same issues. He is 2 years 9 months, but we started to worry about him around 17 months, so close to the same age as your daughter. He also banged his head when frustrated and throws awful tantrums and is a major 'sensory seeker'- so he also takes big risks. Luckily he is quite coordinated physically so he hasn't had many accidents...He also bites when angry or frustrated and makes it very difficult to set limits. But he is also very social and makes good eye contact so we never thought about Autism Spectrum Disorders (ASD), although he definitely has sensory processing disorder.
So a few suggestions- one is definitely Occupational Therapist (OT). We started Occupational Therapist (OT) when he was just over two years and I think it has helped. The Occupational Therapist (OT) at least understood his actions in terms of sensory processing disorder (SPD) rather than writing them off as boy behavior or toddler stuff. It upset me when she said that he doesn't understand danger and puts himself at risk (it's really scary to hear even when you are living it day to day), but it was also a relief because at least someone else was getting this and helping us. She has also helped him with transitions which are very difficult for him.
The other thing is that he has gotten better as he's gotten older. No longer bangs his head, and acquiring spoken language has helped him to get less frustrated and to follow rules more. His impulse control has improved, although it's still an issue when he's really upset.
Find an Occupational Therapist (OT) ASAP! We haven't gone to the developmental pediatrician yet, but we have an appointment in a few weeks. i will be interested to hear what she has to say.
You are not alone...I understand the feeling of being on the verge of tears many times throughout the day! It's hard.