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Learning to Stepparent's picture

Hello everyone.

I have been searching for a stepparenting community for awhile now.

I have BD who just turned 9 and a SD who will be 5 on Wednesday. My fiance has custody of SD so she lives with us full time which means, given the hours he works, I am her primary caregiver. She is supposed to go see her mother down state every other weekend and for some holidays but BM was supposed to have her for spring break the week before last and didn't take her claiming she had to work and was supposed to have her this past weekend but didn't take her and tried to get out of any weekend she is scheduled to have her when SD has dental work done she says because she wants SD to heal and get feeling better but I'm pretty sure it has more to do with BM not wanting to have SD if there is any actual parenting involved rather than just happy happy fun time.

We have had some behavior problems with SD and that combined with some delays in development led us to consult with a child psychiatrist who referred us to the local hospital for further testing and evaluation. We are going through that whole process now and hopefully we can get some answers and help. There is, obviously, much more to this story than that but didn't want to bore everyone with all the details. Suffice it to say my suspicion of developmental problems has caused major problems between me and the in laws. Turns out I was right. The psychiatrist said SD has pretty apparent ADHD, her speech is delayed by about a year, she has some anxiety, and is showing signs of being on the spectrum but we do not know yet whether it is enough to classify her as being on the spectrum or not. We have an ADOS test scheduled for Thursday so we will see.

I'm looking forward to getting to know the community and hopefully find some support and offer support to others in this crazy role of step parenting that we find themselves in.

Learning to Stepparent's picture

Sorry everybody. I somehow managed to post this twice. Could a mod delete one of them please?

Learning to Stepparent's picture

Thank you so much. It has been a long road. I have thought something might be going on with her since the day I met her. As it turned out, extended family members and friend of the family who had known SD since she was born had also wondered but never said anything to her dad or anyone else because they didn't want to hurt his feelings, and also because they knew it would cause his mother to go on one of her bat shit crazy episodes but they started talking to me about it.

One of the problems with getting help is she is borderline, most of her symptoms aren't real obvious and some are really subtle but they are there. Another thing is many of the symptoms she has could possibly be explained by her medical and social history. Sure, her mother gave up custody and her anger with that could perhaps be causing the hour long kicking screaming tantrums when she doesn't get her way. Sure, she has been horribly babied by her caregivers since she was born so that could explain why at 4 years old she couldn't so much as put a pair of socks on. Sure, she had tubes in her ears due to lots of ear infections when she was a toddler, perhaps that explains the sensitivity to high pitched noises. Sure, maybe at 4 1/2 years old she can't really peddle a tricycle because nobody ever worked with her on it before. Sure, maybe she can't sit still or focus on anything for any length of time because no one ever taught her how. But the severe toe walking, lack of eye contact, and speech delay was not caused by any social factors. At some point you have to stop trying to blame her mother and question whether these are all separate issues or if there is an underlying condition connecting them.

Monchichi's picture

Another poster here recently told me about attachment disorder. Look it up as it explains some things us laymen don't know. Does not change being on the spectrum. On the spectrum can be aspergers/ autism/ dyspraxia/ apraxia. All come with motor planning and speech problems. There are so many therapies and a lot of support out there.

Learning to Stepparent's picture

I had considered attachment disorder but didn't think she fit the criteria but who knows, I'm certainly not an expert just a mom with a gut feeling and the ability to google.

We have had one hell of a time getting help. I convinced my fiance a year ago to have her evaluated by the intermediate school districts early intervention program and they spent all of a half hour observing her and said nope, everything is fine, developmentally she is right where she should be. A friend of my mother's recently retired from that program and told me privately that the ISD is bad with mild cases and we needed to take her to someone with more experience.

I tried talking to her pediatrician and he all but laughed me out of the office saying nothing was wrong. He said the toe walking was normal, she would grow out of it. She was about 3 months away from turning 5 at the time and she walks on her toes about 95% of the time, don't think she's growing out of it dude. I told him some of the things I have noticed like lack of reaction to uncomfortable temperatures and sensitive hearing and seemingly desensitized sense of touch. He just gave me this blank stare and goes "Um, I don't often have parents tell me that." Ok, good for them I guess but I'm telling you this.

We finally got the referral for further testing and evaluation in mid January and they have made and cancelled 4 appointments with us for an ADOS test. I swear on all that is holy if they cancel the 5th appointment (scheduled for Thursday) security will be dragging me out of that office and I am filing a complaint with someone.

Learning to Stepparent's picture

Ooh, I will try that thank you. It's really noticeable when you are trying to talk to you and looking her in the eye. She will look at you but won't hold a gaze for more than a half second or so and she will be looking off to the side or down to her feet.

She is in preschool now and she is due to start kindergarten in the fall. Hopefully we can get some ideas on Thursday as far as what her needs are so we can start the process of setting up an IEP at school.

Learning to Stepparent's picture

I guess toe walking being considered a symptom of autism has been supported in the medical literature for years but evidently it hasn't gotten as far as SD's pediatrician or her preschool teacher.

This isn't her, it's just a video I found on youtube but this is exactly what she does.
https://www.youtube.com/watch?v=aBPfv3vEUvE

Learning to Stepparent's picture

Oh I know he is a moron. Our kids go to two different pediatricians (love mine!!!) and while I think it's absolutely ridiculous to have the kids at two different pediatricians there is no way in hell I am entrusting my daughter's care to that moron.

Around Halloween she had the worst meltdown ever that lasted an entire hour and ended with me restraining her because in addition to the kicking, flailing, going limp, and screaming like we were filleting her with a rusty knife she started slapping herself and kicking at us. At that point I told her dad that I wasn't asking anymore he was making an appointment with the pediatrician and come hell or high water I was going and I was laying it all out on the table. It took us a month to get in so the day after Thanksgiving we went to the pediatrician and DH had told the receptionist when he made the appointment that she flies into rages that generally last a half hour or more and we can't control them. When the doctor walks into the room the first thing he says is I really don't have any experience with this we need to refer you to someone who does. At first I thought hey great, I may actually be gaining a little respect for the man. But then he goes on to say the toe walking is totally unrelated, it's normal, she will grow out of it. She doesn't have autism because she can follow directions when told to lay down on the table. She may have a touch of ADHD but he thinks it more likely it is all due to instability when she lived with her mother.

Ummm....if you don't have any experience in this area and are referring us to someone who does then shut your mouth and stop speculating. I told the psychiatrist that the pediatrician felt the toe walking was unrelated, normal, and she would grow out of it and that he felt it was all due to instability when she lived with her mother and psychiatrist instantly said no, it's not normal, at this point she is not going to grow out of it and this is not all due to instability with her mother.

I just asked DH today if he had thought about making SD's 5 year well baby check up appointment and he said he would call and I said well, are you still comfortable with Dr x? and he said he would try and get into his partner. After being wrong about all that I have to say I wouldn't ever take my child back to him again. I mean I know doctors are only human and make mistakes but good god how do you ignore the kind of walking in that video?

Monchichi's picture

You need to get involved with an occupational therapist. Try deep pressure brushing as well as pressure touch. In extreme cases hold your SD in a backwards body lock non threatening but very calming. Almost like a full body pressure calming touch. You need to calmly warn her you are doing it in a soothing voice. Will try find you something on the technique tomorrow. Sensory overload is scary for this children as is their intense frustration. Don't do any of these things if you are over wrought. Most spectrum children can feel your moods and emotions. Dad might be better at this. Always look for cues of a melt down and start pressure touch before it escalates.

Monchichi's picture

Heel toe is not an automatic sign of autism. Echolalia, no eye contact as tommar is describing is one of the biggest indicators along with inability to pick up non verbal cues, late poor speech development and motor planning issues. Lack of social skills etc. The not wanting to be touched or physical contact can be for so many reasons. I encourage you to seek out as much advice as you can but don't pick a label even if assessed. High functioning is a good thing. Anyone dealing with a child on the spectrum finds this a hard road to travel never mind as a step parent the child does not connect to. Children on the spectrum can be very literal to the point of seeming rude. They also say things as they see it or have been told and don't as a rule of thumb lie.

Learning to Stepparent's picture

Well of course toe walking is not an automatic indicator but it is an indicator as well as the speech delay, lack of coordination, poor eye contact, and a few other things I mentioned previously.

And yes, we have been referred to an occupational therapist, a speech therapist, and a physical therapist as well.

SMLIFESUCKS's picture

My son has adhd, he did the head banging up until like a year ago. He is almost 14, will be in May. He exhibits signs of aspergers but is so mild they won't classify him with it. That's fine with me because I know what he does and that he can't help it.

My son was almost OCD at 2 years old. It was odd to watch him flip out if you tripped over one of the cars and knocked it like a quarter of an inch out of his line.

So they watched him for several years before they would diagnose him with ADHD. However he didn't have the toe walking, slow speech or things of that nature. He use to have a hard time looking at you but I did walk away alot because I thought he was mumbling. So now he makes it a point to look at you, like maybe too much. LOL

I hope they get her sorted out.

Learning to Stepparent's picture

Thank you. At this point I'm just hoping for some help.

She is so behind in so many different areas the psychiatrist mentioned looking into global developmental delay though didn't officially diagnose her with it. Right now, we are looking at PDD-NOS but, like I said, she is borderline. She does show some symptoms but some of them are pretty mild and it isn't a cut and dried case so we will just have to wait and see. Hopefully at a minimum they will give us some therapies and methods to use with her at home if nothing else.

Monchichi's picture

As promised on pressure therapy:

https://www.youtube.com/watch?v=IT9NT6_mu-c
http://www.developmental-delay.com/page.cfm/260
https://www.youtube.com/watch?v=uETDXHrH1io
https://www.youtube.com/watch?v=t9LSbINc-y0

Have a look for tools to help with speech:

http://www.playingwithwords365.com/2012/02/top-toys-how-they-can-support...

A number of simple things like a plastic flute can be bought online to help with this. I hope this helps you and good luck with the assessment.