Frustrated, Drained, Worried . . .

All4Pea

I don't know if I really have a question.  Just looking for some advice, support, empathy.    Maybe someone will see something here that reminds them of their child and say something that helped for them.

My daughter just turned 5 (starting kindergarten in the fall).  She was a 28 week preemie.   She has been in various therapies since she came home from the hospital.  A little history, she had two head u/s and a CT scan all showed no brain bleeds/damage.   However, she globally delayed as a infant/toddler.  She didn't sit until 9 months, walk until 20 months, potty train until 3yr 4 mos.   She got PT, OT, DT, a little ST, and Music Therapy through EI.

We see a Developmental Pediatrician.   My daughter had extensive testing for Autism, but was found not to be on the spectrum.   However, she has some things that tend to go along with autism.  She is still a head banger, she has some weird sensory issues, she become obsessed with certain objects, and her play skills are really lacking. 

Here is what we know.  She probably has SPD (seeker), possibly ADHD (no dx yet), and she has anxiety issues.  We recently started OT again and the therapist told me that she has an retained asymmetrical tonic neck reflex, which seems correct as while she is very good with letters, her handwriting is way worse than her peers.    She has motor planning issues.  She is also incredibly smart in some areas.   She taught herself to recognized all of her letters by 18 months and phonics by 2 1/2.  She is obsessed with letters.   Her adaptive skills are behind, she is just now at 5 dressing herself for example.  Her expressive speech has always been good, but their was a thought at one time that she had a recessive language disorder.  The doctor has since decided this may not be the case.

We are doing exercises for the asymmetrical tonic neck reflex and we are start the brushing protocol tomorrow.

The two things that worry me the most are her emotional issues and intermittent ability to understand simple directions (will explain this more).   Everyday is an emotional roller coaster with her.  She is happy, she is crying, she is scared, she is throwing a tantrum, it changes minute to minute.  She has a lot of fears. If a fly gets in the house she goes nuts. She a lot has some rather bizarre fears.  The other night a small piece of tissue got in her bath and she refused to get back in even after we took it out because it was going to "get" her.   

The other thing is that at times she can't following even the simplest instructions or even hear what anyone else is saying.  It is like there is so much going on in her head, so much noise, that she can heard anything else.  During these times she talks constantly, manically, sometimes it makes sense sometimes it doesn't.  These times seem to be cyclical.  For a few weeks she will only be this way it if she is excited or over-stimlated.  Then for a few weeks she is this way almost constantly.  She is hyperactive and rough.  She is very rough with her little sister toys, and often breaks them.  She has toys of her own but shows little interest in them.  

She wears me out.  I start each day determined to make it a good day but often before I even have her dressed, I am ready to pull my hair out.   I worry about her little sister growing up with this disruptive force in the house.  But I also worry that because her little sister doesn't have these issues that she is going to grow-up thinking that she is a "bad kid".   I worry about her future.   I worry she will have self-esteem or mental health problems.  I even worry about her committing suicide when she is older.  I give myself pep talks and say I am going to do everything I can for her with therapies, read every book, scour the internet, do whatever it take to help her and also keep my cool with her, but at the end of the day I am physically, emotionally, and mentally spent.  I feel guilty because I didn't do everything with her I set out to do and I got angry with her.   A few weekends ago I sent her to my mother because I just couldn't take it anymore and I needed a break.  I just feel like I am failing her.

If you got to the end, thank you for reading.  I know it is long.

All4Pea

Thank you I was hoping you would reply.

-auntie- said:

All4Pea said:

I don't know if I really have a question.  Just looking for some advice, support, empathy.    Maybe someone will see something here that reminds them of their child and say something that helped for them.

Hi. Welcome to the best board on the bump you never wanted to join.

Thank you

My daughter just turned 5 (starting kindergarten in the fall).  She was a 28 week preemie.   She has been in various therapies since she came home from the hospital.  A little history, she had two head u/s and a CT scan all showed no brain bleeds/damage.   However, she globally delayed as a infant/toddler.  She didn't sit until 9 months, walk until 20 months, potty train until 3yr 4 mos.   She got PT, OT, DT, a little ST, and Music Therapy through EI.

Hmm, I understand your concern, but given that she's was so early, about 3 months, are these milestones even late for her "corrected" age? That would put sitting at 6 (very average) corrected, walking at 17 (on the later end of normal) corrected. Anything under 4 is OK for potty training in my book.

The term global delay was used by several doctors/therapist.  At one point around 20 months and was 10 months behind on Gross Motor and 6 months on Adaptive, 4 months on Speech.  Interestingly, the only thing she was consistently within her adjusted age was social/emotional. 

We see a Developmental Pediatrician.   My daughter had extensive testing for Autism, but was found not to be on the spectrum.   However, she has some things that tend to go along with autism.  She is still a head banger, she has some weird sensory issues, she become obsessed with certain objects, and her play skills are really lacking. 

Head banging at this age is unusual for a kid without something running in the background. It could be strictly SPD related, but the poor play skills and getting stuck on objects sounds very ASD. When was she evaluated? Did it include an observation in a setting with peers? How long has it been since she was evaluated?

The head banging seems to be a calming mechanism for her.  She will bang if wakes up in the middle of the night or if I yell at her or other stressful situations.  Interesting, she never bangs in public.  I mentioned the banging to all of her preschool teachers over the last 3 years none of them have ever seen it.  It is very rhythmic.   Sometimes she sings the ABC's as she bangs.  I was told she would out grow it and it has decreased but she still bangs at least once per day, more if she is in stressful situations. 

I am noticing her play skills more and more as her sister gets older.  She is my first child and I didn't realize how unusual her lack interest in toys is until I saw her younger sister playing. Again, though, her play skills seem to be better at school.  She does have a great imagination.  She will play pirates or space ship and many others.  She engages her little sister to play as well.  Her little sister does not always appreciate her "leadership skills".

She seems to be able to cover some of her difficulties around her peers.  However, listening and following directions are an issue at school as well.

She had the ADOS in November.  The Dev Pedi seem convinced she is not on the spectrum.    She also had a speech evaluation and the same time.  At first I was told the results were good and there was no receptive language disorder, but then they called back and suggested I get her in a social pragmatics group.   I haven't been able to obtain this for her.  The school district said she didn't need it and there is no private providers that take our insurance.

Here is what we know.  She probably has SPD (seeker), possibly ADHD (no dx yet), and she has anxiety issues.  We recently started OT again and the therapist told me that she has an retained asymmetrical tonic neck reflex, which seems correct as while she is very good with letters, her handwriting is way worse than her peers.    She has motor planning issues.  She is also incredibly smart in some areas.   She taught herself to recognized all of her letters by 18 months and phonics by 2 1/2.  She is obsessed with letters.   Her adaptive skills are behind, she is just now at 5 dressing herself for example.  Her expressive speech has always been good, but their was a thought at one time that she had a recessive language disorder.  The doctor has since decided this may not be the case.

So much of this sounds very ASD to my ear; PDD-Nos to narrow it down. That no longer exists as a stand alone DSM dx, but it's a good short hand for a bright kid with a really uneven skills set. Bright, good expressive language, poor play skills, early interest in letters or numerals, anxiety, fixations, irrational fears (DS had the fly thing- OMG- it's about how random and out of control they seem for DS), delayed self care skills, PT on the later side of average, poor self regulation and the way you describe your feelings as a parent. Any relationship is a dance with two partners, a give and take. It sounds like she's harder for you to connect with at times- but that's not something that either of you can be faulted for. I adore my son; he's a terrific individual, but sometimes he's not emotionally available or even rewarding which used to make me feel like I'd failed. 

I think she is genius.  My opinion is very biased, however I can tell you that she is significantly smarter than her sister.   Her father is very intelligent, he is a highly ranked chess player, very number oriented, analytical.  One of her preschool teacher told me recently that she could see her as being the type of kid who has a IEP and GIEP.  

Could a child be so bright that she is able to cover a high functioning autism in social situations?   She seems sometime to "play act" social situations, basically reenact thing she has seen other kids do.  She definitely has anxiety in social situations.  Sometimes she is okay, some times she shuts down some times she tries to avoid.  However she seems to do well with her classmates (kids she knows well).   She seems well liked at school.  When I dropped her off at school this morning kids were calling her name to come play with them. 

We are doing exercises for the asymmetrical tonic neck reflex and we are start the brushing protocol tomorrow.

Are you doing Willbarger Protocol? Some kids do really well with this.

Yes, starting tomorrow

The two things that worry me the most are her emotional issues and intermittent ability to understand simple directions (will explain this more).   Everyday is an emotional roller coaster with her.  She is happy, she is crying, she is scared, she is throwing a tantrum, it changes minute to minute.  She has a lot of fears. If a fly gets in the house she goes nuts. She a lot has some rather bizarre fears.  The other night a small piece of tissue got in her bath and she refused to get back in even after we took it out because it was going to "get" her.  

I spent 4 years taking driving directions from a child who didn't want to drive by statues of crucifixes. Seriously. And the fly thing. And the sump pump thing. And dogs. And the time her went all Amish-boy-Samuel in the mens room ala Witness and the school couldn't find him because there were bees in the playground mulch. 

Has she ever been evaluated for CAPD? Sometimes kids who can't follow simple multistep instructions have glitches in their auditory processing or auditory memory. Often this improves over time even without work.  But there are strategies to help with this. Keeping you background noise down. Using short, simple phrases. Sound fields in the classroom. And time. This is a skill set that continues to improve through puberty. I like this book as an intro-

There was a thought a while back that she had CAPD, but she has had at least 3 speech evaluations (focusing on receptive) since then, they seem to have moved away from that dx.  The thing that is challenging is that it is inconsistent sometimes she is good at listing/following directions, sometimes not.  She has always done well at the evaluations, very focus.

Here is an example of her not being able to focus.  I am trying to baking more with her, because she like it and it is all about following directions.   Today she going too fast and not listening to me, so held her shoulder and make her look in my face.  I said "You have to slow down and follow directions.   Now tell me what I just said".  She could do it. She said "don't touch the stove it is hot".   Sometime I had said much earlier.  She had no idea what I said even thought, she was looking right at me, and I ask to to repeat it right after I said it.  

https://www.amazon.com/When-Brain-Cant-Hear-Unraveling/dp/0743428641/ref=sr_1_1?s=books&ie=UTF8&qid=1395279913&sr=1-1&keywords=when+the+brain+can't+hear

The other thing is that at times she can't following even the simplest instructions or even hear what anyone else is saying.  It is like there is so much going on in her head, so much noise, that she can heard anything else.  During these times she talks constantly, manically, sometimes it makes sense sometimes it doesn't.  These times seem to be cyclical.  For a few weeks she will only be this way it if she is excited or over-stimlated.  Then for a few weeks she is this way almost constantly.  She is hyperactive and rough.  She is very rough with her little sister toys, and often breaks them.  She has toys of her own but shows little interest in them. 

Has anyone considered a mood disorder? Do you have any family members with bipolar disorder? This part sounds a bit like my younger sister and two of my nieces. Kids this young can have mood disorders. 

The Dev Pedi thinks she definite has anxiety issues.   But says she is to young for a dx.  Bipolar has been on my mind because of the cyclical nature of her behavior issue.  There are anxiety disorders on my husband's side, but no bipolar that I know of.

I should have mentioned that she was tried on adderall and another stimulant when she was 3.  It improved her attention but her anxiety when through the roof.   She had almost no fingernail left she bit them off, head banging increased dramatically, and afraid of everything.   We discontinued after about two months.  It was an awful two months for everyone.

She wears me out.  I start each day determined to make it a good day but often before I even have her dressed, I am ready to pull my hair out.   I worry about her little sister growing up with this disruptive force in the house.  But I also worry that because her little sister doesn't have these issues that she is going to grow-up thinking that she is a "bad kid".   I worry about her future.   I worry she will have self-esteem or mental health problems.  I even worry about her committing suicide when she is older. 

I hear you. There are so many factors and people to consider. 

I give myself pep talks and say I am going to do everything I can for her with therapies, read every book, scour the internet, do whatever it take to help her and also keep my cool with her, but at the end of the day I am physically, emotionally, and mentally spent. 

It's hard. It's not supposed to be this hard. It sounds like there is a piece here that you need to get a handle on but that isn't quite a slam dunk dx. It may take some time to figure this all out. 

She has had so much testing lately.  I am not sure where it is going next.  Maybe once she is in Kindergarten things will become more obvious.  We go back to the Dev Pedi in May.

 I feel guilty because I didn't do everything with her I set out to do and I got angry with her.   A few weekends ago I sent her to my mother because I just couldn't take it anymore and I needed a break.  I just feel like I am failing her.

That was probably a win for everyone involved. I do believe that sometimes it takes a village and that getting a handle on your own zen place makes you a better and more effective mom.

If you dev pedi is the one whose been following her since her NICU days, maybe you want to start over with a fresh practice that hasn't prejudged both of you. Maybe when she's closer to 6. Have you asked the school district to evaluate her?

I feel pretty good about our Dev Pedi.  She is very good.  I had to call in a favor to get in with her about 2 1/2 years ago. Also, to see someone else we would have to go a significant distance from home.

The school district is worthless.  The Dev Pedi recommends services, the school district evaluates her and says she doesn't quality.  Right now, all she is getting is a half hour of inclusion support weekly at her preschool.   We are going to have to another battery of evaluations soon with her starting kindergarten, so maybe things will improve.

Again thanks for your reply.

If you got to the end, thank you for reading.  I know it is long.

kcisthebombdotcom

I stink at quoting, but yes a girl with high functioning autism can essentially "fake it" in social situations. Girls generally present differently than boys unless they have classic autism which means they're grossly underrepresented. My dd has asd and has been pretend playing since two and has a great sense of imagination. She plays with a wide variety of toys unscripted. She's also social and enjoys being the center of attention. At the surface it all looks pretty normal but it has to be on her terms. She has no qualms ignoring kids or adults that are unfamiliar or who she just doesn't like and while she doesn't mind joining play that is what she wants to do she is fine being alone.

HopeAlive3

So many hugs to you... I wish I had some advice to give, but I did want to let you know that you sound like an incredible mom. Your love for your daughter is so evident. She's so blessed to have you! 

macchiatto

I feel for you. Empathy I can definitely provide. I'm glad you found this board; it's been a huge help to me at times.

I have 5y/o twins, one NT and one with some special needs. He is kind of borderline for ASD but no Dx yet, definitely has anxiety (and I can relate to getting really frustrated at times; that's probably the most exhausting part of parenting him), very bright especially when it comes to letters and numbers. He has hypotonia and has had OT, PT, feeding therapy and EI and some preschool sped services though when re-evaluated this year by our new school district, he didn't qualify. 

This bit is totally him: "There are certain kids on the higher functioning end of the spectrum who hold their acts together in school and then discharge all their anxiety and frustration at home where they are safe and loved unconditionally. These can be challenging kids to advocate for since school situations trigger the behavior but the school never witnesses it and writes it off as not being "educational". 

I know it's tough when things are muddy, and also so hard when you psych yourself up for a good day and end up losing it. The combination of my very high-energy, spirited, rough-and-tumble NT kid and my sensory-avoiding, anxious, super sweet but easily falls-apart kid can really wear me down. I do think having an NT twin has benefited my son in many ways; a built-in peer model has probably fostered his development, especially socially, but they can be a particularly combustive combination.

Not sure if all my rambling is helpful; just wanted you to know you are not alone in these murky waters.