New here- Boy/ Girl twins, both with issues

[ShellTx]

Hi,


I'll warn you that this is long!

I have 4 1/2 year old boy/girl twins. I'll start with my son. My twins were born full term. He had plagiocephally and torticollis (tight neck muscles). He saw a PT through ECI for the toritcollis and general muscular issues (arms and legs). We were able to correct with re-positioning instead of a helmet. He had an issue with his larnyx which required oxygen for several months when very young. He saw an Occupational Therapist (OT) for oral motor issues (food stuffing, not chewing correctly, etc...) and what was eventually called "sensory issues". From 2 months of age on, he had a challenging temperment, could not self sooth, and was easily over-stimulated. There were/are also some sensory seeking behaviors, which complicated things. He also had severe reflux until about 14 months. At 2 years of age he had maybe 5 words, which was a concern. Then, at about 2 years, 2 months, the flood gates opened and he was speaking in sentences within weeks. He has always been a very smart kid, so the therapists thought that the temperment was due to having so much information in his head and not being able to express himself...and that things would improve when he started to talk. He would go into 1-2 hour rages that nothing could stop.....just rolling around on the floor screaming. With the communication improvement and some self-soothing techniques, things did improve considerably. His ECI file lists "sensory issues" as a concern, but since he was so young, we decided not to do a full sensory diagnosis and work-up.

He started preschool at age 3 and we had some initial challenges, especially with transitioning and finding new self soothing techniques (since he couldn't go to his room and calm down like he does at home). We made it through and are in the second year of preschool, but things are getting considerably WORSE at home and at school. He is definitely still showing the sensory issues.....easily over-stimulated, can't handle chaos or loud noises, clothes bother him, etc.... Transitions are still tough and if there is any change to his plan, he goes into a crazy meltdown. He'll scream, thrash, hit, claw me, kick me, etc. This used to happen mostly at home, but now it's in public. Very MINOR disappointments set him off. He doesn't want to go to school (but loves it once he's there and does fine). Almost every day it's a struggle to get him to go in and sit down in class. This morning I had to carry him out while he was clawing my arms and trying to slap me in the face. Multiple times a day I'm getting kicked, hit, spit at, etc.... It's getting to the point that I'm scared to take him anywhere because the meltdown could happen at any moment.

He has friends and will play with them in a group, but prefers to play alone a lot of the time. He is VERY inquisitive and likes to know everything about a certain subject. His biggest obsession is cars/ trucks/ tractors, but he has also gone through a volcano obsession. He's very fact oriented....likes to watch documentaries, and read (us read to him) factual books. He definitely beats to his own drum, but for the most part does fine in school and social situations.....when he decides he wants to be there.

We have our first appointment with the psychologist next week. Any opinions my son's behavior? I think I'm most nervous that there WON'T be a diagnosis. Any feedback from you guys would be awesome!


And now on to my daughter..... She really had no health issues during the first few years, but has always been strong-willed. At about 3, things began to escalate. She also would have HUGE meltdowns (but only at home), was very destructive, and very agressive towards me. This continued to get worse and by the end of last year (age 4) I felt like things were totally out of control. She NEVER sat down to play with a toy, but would just walk through the house provoking her brothers or me. She always had kind of a wild look in her eyes. If there was any type of consequence, she would go into a rage and tear up the room, climb up the refrigerator or on top of the cabinet, follow me around the house trying to hit me and screaming at the top of her lungs. If we were in the car, she would take off her shoes and throw them at my head, and then scream over and over.....which then set off my son with sensory issues. She gets a glazed look when she's going into the episode and sometimes doesn't even remember what she did. If I try to discipline her in any way, things escalate and she's destroying the whole house. At this point, when I see her going into an episode, I just sit with her (sometimes holding her hands so she won't hit me) until she calms down. That seems to be working best, but I still want to know what's going on. I feel bad for her because I genuinely don't think she can control her actions. She was also craving sugar and bread like crazy, so I changed up our diet and cut out most sugar, all preservatives, and all dyes and have seen some improvement. She was in play therapy for several months, but I didn't see much improvement directly related to that. She has an appointment with the psychologist as well.

I also have a 2 year old who is copying the agressive behaviours of the old kids, which is not fun. :-(


Any ideas on what the diagnosis might be? Or will there even be one? Any similar stories?

Thank you!!!

Shelley

 

[BusynMember]

Hi there and welcome. Yes, many of us have gone through this.

Have you taken either child to a developmental pediatrician or a neuropsychologist for an evaluation? I think both children could use one to see what is really going on and how to help it.

Some of your spelling indicates to me however that you are not in the US. They do things differently in each country. Can you tell us where you are from?

 

[Liahona]

I second the opinion of getting more testing done. Especially make sure they test for autism. Getting that complete sensory evaluation from the Occupational Therapist (OT) would be good to. You've had a rough time so far. Welcome to the board.

 

[TeDo]

I third the need for further assessments. Your son sounds very much like he might be on the autism spectrum so definitely make sure they test (not screen) him for that. A neuropsychologist or developmental psychologist would be the most thorough. I also agree with Liahona that a THOROUGH Occupational Therapist (OT) evaluation is called for. They will help figure out what all his "sensory issues" are and help him and you deal with them. The one we finally found was AWESOME and found things that no one even knew were there. Our neuropsychologist was also worth the waiting time (7 months from call to actual appointment). These two evaluations and the work the Occupational Therapist (OT) did have done wonders. You might also want to have those same professionals evaluate your daughter. I also have twins and even though they are as opposite as night and day, they both have similar issues that manifest in very different ways.

Welcome to our little "family". You will find the most wonderful support here.

 

[Ktllc]

Welcome. Like previous advice: you need more testings. It is near impossible to tackle problems when you don't know where it is coming from.
With the right Occupational Therapist (OT), the sensory stuff can get A LOT better.
Don't procracinate on getting testing done. It takes a long time to get the whole process going. But even if you don't end up with a clear cut diagnosis, you'll get a lot of understanding in your kids issues. A least, that's what happened for V.
We are still struggling to really know what is going on (partly because he is so young) but with all the things I've learned along the way, our family life has gotten a lot better.
Come often and ask questions. It will help you, hopefully, as much as it helps me.

 

[ShellTx]

Thanks so much for the responses! We have an appointment with a neuropsychologist. Would you suggest going ahead with the Occupational Therapist (OT) evaluation before the neuropsychologist appointment or is that usually something done AFTER the testing?

 

[nvts]

Hi! Welcome to the crowd - you'll find a lot of strong shoulders here!

I would personally go for the Occupational Therapist (OT) evaluation as soon as possible - neurospsyches take time, yet Occupational Therapist (OT) evaluations can usually be dones fairly quickly. I would also consider looking into some sort of ABA therapy - I just started my youngest with it and the techniques that I'm being taught have helped significantly.

Good job Mom on starting the ball rolling - my heart goes out to you - your situation is quite difficult

Beth

 

[buddy]

Several of us do like that approach. It takes a while to get into a neuropsychologist clinic for many people and an Speech Language Pathologist (SLP) (speech language pathology) and Occupational Therapist (OT) (occupational therapy) clinic are often a little quicker. The testing done in their specific areas go far beyond what the neuropsychologist will be able to do in those specific areas but the neuropsychologist will find the results of their testing very useful in putting together the bigger picture.

While the Speech Language Pathologist (SLP) and otr may have ideas about what is going on overall they will only be able to diagnose issues in their profession related to expressive and receptive communication/social communication and for Occupational Therapist (OT), fine motor and sensory issues. All of them will want to know about behavioral issues so from each of their perspectives they can hunt for possible causes or relationships between behaviors and conditions that they can help you with in therapy. For example an OTR (registered occ. therapist) will ask about behavior because lots of behaviors are signs of sensory seeking or sensory avoiding issues, or an inability to regulate the neurological system after too much stimulation, or when fatigued/hungry etc. These kinds of issues can be worked on regardless of the bigger diagnosis so it will not hurt to do those evaluations.

Even if they find things that really help explain the difficulties your kiddos are having it is really important to see if there is a "big picture" diagnosis because that can really help you access more services over their lifetimes. The neuropsychologist can also help track things over the years. Make sure that any past evaluations that you feel are valid and show your concerns also are given to the neuropsychologist before the evaluation because it will help them see the whole picture. you have a lot of data already to share and I bet even a summary like what you gave us here would help. There is a format on this site for a full developmental history that could save you time over the years if you just continue to add to it year after year. Trust me, for those of us who have filled out developmental profiles over many many years, it is nice to have that kind of information at hand. Saves lots of time (dont know about you but sitting around waiting rooms is not a picnic in our world...I like to give them as much info ahead of time as I can). I have had most clinics (Occupational Therapist (OT), Speech Language Pathologist (SLP), neuropsychologist all of them) send out the parent forms and checklists and assessment protocols ahead of the appointment anyway. So you can just add your info to the envelope and send it all together.

Oh by the way, WELCOME! They both definitely sound like something is going on and there are a ton of similar stories. Are they in early childhood special education preschool, gen. preschool or both? Some of these things do have a genetic component as I am sure you are aware, so watching the 2 yr old in case it is not just copying behavior would be a great idea (I am sure I am stating the obvious so sorry, not trying to insult you or anything....that must cross your mind frequently already.) Has their pediatrician ever said anything?

Each parent here has their own perspective, based on what we have familiarity with so we can only share what strikes us in terms of similar issues and you of course have to decide if that fits what you are seeing in your home. Do not worry if you disagree or anything, we are only on the internet after all, smile! Not like we can see the big picture like you can. I also am an Speech Language Pathologist (SLP) as well as a parent of a challenging difficult child/special needs child. I am only sharing that because my experience will show additional bias because I have worked with more students with developmental conditions than kids who have mental health conditions (but not exclusively...and my own son has a mental health challenge due to his early history of being in foster care and adoption added to his neurological diagnosis's), but I am not in any way saying that your kids have X or Y.... I am just sharing that because in all fairness you can say to yourself "well of course this chick is going to say that, it is what she has been around the most but she doesn't know about Z and K issues in our life"...LOL...

You asked about ideas and not knowing your family history of other health concerns (genetic or mental health issues ) that could be contributing, I was thinking the following:

the different language development profile PLUS the sensory issues PLUS the inability to transition well-(rigid-black white thinking issues? like when things dont go as he wants he falls apart) PLUS aggressiveness (not a formal symptom but a reaction that many see because of all of the other things you have listed) PLUS play issues (prefers alone, can play in a group-does he more play next to them or can he do a full scenario of creative play where they take on roles and the play varies in what they say to each other, his responding to what they say to him and then creating a new idea or response? or is it more chase play and building things along side of them etc?) and social skill challenges PLUS the topic/special high interest obsessions when put together as a full group, could suggest Autism Spectrum Disorder--Autism Spectrum Disorders (ASD). It seems to affect his overall life (school, home, out in public), started in early childhood (still is in early childhood).

Lots of other diagnoses can have many of the separate issues you have mentioned, but but I am suggesting that putting it all together, Autism Spectrum Disorders (ASD) it is a possibility, for both of your kids...(not as sure about the 2 yr old but if it turns out that this is an issue you will want to make sure/monitor). Since this is a spectrum disorder kids are affected in a wide range of ways and have a wide range of symptoms. Most kids do not have all of the symptoms you read about. It can be a really hard thing to think about because it certainly is a life long challenge, but the good news in a diagnosis like this would be that far more therapy doors would open. Support in school would increase (usually, we all know of exceptions--sadly) greatly because issues that are known to be related to Autism Spectrum Disorders (ASD) are easier to get support for (Occupational Therapist (OT), Speech Language Pathologist (SLP), Social skill groups, adaptations and accommodations in the classroom to help match the way a child processes information) which if done right can help a child to achieve their full potential and for many that means developing at the same level as other kids academically. In fact, many kids do far better than average in the academic areas when given the right accommodations. If it turns out that Autism Spectrum Disorders (ASD) is a possibility, it is no surprise that each of your kids could look quite different in some of their symptoms. Families who deal with this issue...with more than one child on the spectrum... can have kids who range from barely verbal and socially not at all interactive, to kids who almost dont meet criteria for diagnosis who have friends and do well in school but just are quite awkward socially or need to be able to take a break or wear a weighted vest to help with sensory issues...or ear plugs for assemblies etc. All this range...right in the same family. Again, this is just my impression from your post so it may not be what is going on at all, but I decided to answer your question knowing it could be a risk to say this.

Here is a simple definition of Asperger's syndrome though the lines blur between high functioning autism and in the new autism criteria that is in the book doctors will use to diagnose (the upcoming DSM V) they will not even use this term, but in general society I believe it will continue because it helps to explain in a quick way a little bit more specifically what types of issues a person on the spectrum has. I think you can see why I was thinking this for you though:

(2) Asperger Syndrome (AS)
Individuals with AS show deficiencies in social skills. They have difficulties with transitions and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often the individual with AS has difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, the person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. Those with Asperger’s typically have a normal to above average IQ and many (not all) exhibit exceptional abilities or talents in specific areas of interest.

Since your kids are so young, and you are so proactive, whatever the neuropsychologist says the diagnosis or challenges are, your kids will have a good chance to achieve their potential. It is a lot of work but there is no feeling like knowing you have done all you can do and helped support your child.

So this is just ONE option and ONE area to investigate. You are on the right track checking out all of the possibilities with other assessments and doctors.

You are not alone, this is a huge and daunting challenge. No matter what anyone says, they are kids first and no label takes away their unique and precious characteristics. We will be here for you as you go on in this journey!

 

[BusynMember]

If you do the Occupational Therapist (OT), Speech Language Pathologist (SLP) first, be SURE to still see the neuropsychologist. OTs and STs are not supposed to diagnose and are experts only in their fields, not others. Neuropsychs pretty much are taught the whole gamut and have PhD's in psychology with special training in the brain. OTs and STs do not have the same degree of training.

Check your public school district, if you are in the US, because your kids may qualify for Early Education, which is free and has Occupational Therapist (OT) and PT and ST there. My son benefited greatly from these services. If they do qualify, they will carry over into kindergarten too.

 

[ShellTx]

Thank you so much!!! Midwest Mom, I am in the US and have considered going through the school system. However, my husband is afraid that if I get the school system involved, it will put a label on the kids that they'll never live down and that they'll never be allowed to be in a "normal class". Of course, I know that this isn't true, but he thinks that things are the same as they were 30 years ago when we were in school. So....I'm working on him. I think mostly his still in a bit of denial about everything.

I have an appointment. with our pediatrician on Tuesday to get the Occupational Therapist (OT) referral and I have appointments with the neuropsychologist on Wednesday for the initial meetings (both kids). I also found out that my insurance covers ABA, which is shocking considering how awful our insurance coverage is!

Buddy, thank you so much for your reply. I've read it 3 times. So much good info.! You got me thinking about whether he plays WITH other kids or just chases them, but plays beside him. He definitely doesn't play the same way other kids do, but he does play with them a little bit.....for a few minutes until he finds a favorite toy and then goes off by himself. He'll drive a dump truck in the dirt for an hour or two. He participates in imaginitive play at home, but it's usually something that his twin sister has come up with and is instructing him to do. They both go to a regular church preschool and have friends there. He's not shy, but definitely not super social.

I'm keeping an eye on my 2 year old, but so far I haven't seen any worrisome signs. He is SO different than my older 2 were are at the same age. He actually responds to discipline, which is something completely new to me!

Thanks for everything! Glad I found this board!