Pondering Tianna's Condition and a house of kids on Spectrum

Well Tianna still seems to be doing well she is a very strong kicker. She also has been getting hickups lately I wonder what she thinks about when she gets them. I wonder if they scare her. I wonder if because she is special God lets her see inside the womb and out. I wish she would just come get in my brain and let me know what choices I should make for her. I have 6 weeks till my next ultra sound and I wonder daily if they will find something else wrong with her or if she will even live that long. Wondering so many things daily can give you heart burn lol well its probably pregnancy but still. I have wondered after reading many posts in HoPE for families why some with Tiannas condition live even though they seem worse then she is. I decided its like wondering why some infants die of SIDS and some dont. There is just not a rhyme or reason for it.
As for my back it is a bit better but only if I dont do things I should be doing. Bending is not so good and sitting for long periods like longer then 10 min makes it ache something fierce. I worry that I will make it worse if I am not careful. However I still get up and move about the house but ohh what a pain it is to not pick things up. With 5 kids on the spectrum my house is a disaster they just are not great at cleaning up after themselves. Even if they do "clean" it is still not really clean at least it is better. I really want to mop the kitchen and organize My sons toys that have been scattered all over the living room for weeks. However I dont think that will happen anytime soon.

Another appointment Some insights into my children on the spectrum

I went to my other midwives yesterday it was a good visit. If anyone wants to give homebirth a go or just some excellent prenatal care or birthing classes. I recommend them http://birthingyourway.com/ They have been a great support during this difficult time. I like my other midwives as well they deliver in the hospital they are athttps://www.facebook.com/pages/Central-Utah-Clinic-Womens-Center/131126283606333 Both have listened to my concerns and help me realize this is a process and sorry the vast majority of men are not really going to get what you might be going through. So male doctors seem kinda cold during this experience.
I have gotten the keepsake boxes for almost all my children just missing the oldest and a blanket for each of them but ryan his favorite color is red so its a bit more challenging to find a soft blanket in red 
I did talk to the counselor at school today I filled out forms and she asked how much the kids knew. I went over each child and how I thought they were doing then she said something about 4 files on her way out and I realized I had not discussed if she could see my only child without an IEP. My poor Neuro typical child she so gets lost in the day with all the melt downs and tantrums I think she might be in need of a little more attention. I then hunted her down and mentioned that I had a NT child as my third she was slightly surprised as I usually dont mention her mostly because we are always dealing with the others who have IEP's. She had me fill out a form for her to see her I asked her to also see how she is dealing with being in a sibling group with all the rest on the spectrum. I love my Beth she has always been so easy even as a baby she was the only one that slept through the night. She nursed right away and is usually very pleasant. Not that she did not have some moments and cry but usually just cause she needed something ie a diaper change, burp or feeding. I just thought God had given me an super easy child as my older two could be challenging as infants. LOL My husband and I have now come to the conclusion she is probably how most babies are and should have realized our others had some struggles a bit sooner. I used to describe my others as grumpy or moody nothing seemed to appease them easily. I wonder sometimes if some of these behavior issues could not be caught sooner just from observing babies.

Another on the Spectrum And Driving

Well I recently came from another IEP meeting where another of my girls is being helped for Autism and ADD after much testing and a Psychologist evaluation. I think I might just melt down! lol, works for them I should be allowed once a year right? Well that gives me 4 confirmed children on the spectrum out of 6. Well I guess I should be grateful that 3/4 of them are aspies. I dont know if it really makes a ton of difference as they all melt down and the latest child also has sensory disorders so you never know what is going to set her off. I however am fairly certain my youngest is also an aspie but she flaps and repeats which my others have not they do call it an puzzle for a reason :)

My oldest Aspie has been having alot of anxiety and depression lately she tries the hardest to fit in with her peers then seems to come home and shut down. School is getting to be alot for her to keep up with halfway through 11th grade. I hope she can keep it together till high school graduation but the emotional toll is what I worry about. She also has got a learners permit and is driving AHHHHH! lol just kidding she is actually pretty good.

My second also an Aspie struggles with OCD behaviors and anxiety. We have been using a stress ball and this seems to have limited her finger chewing. She has also adjusted to life as a 7th grader to some degree so she is less anxious.  She also comes home and is very tired just needs to unwind.

My third is neuro typical and seems to do well she does struggle being in a family full of Autism and trying to keep her siblings focused at times.

My fourth is the newly diagnosed Aspie mentioned above school is a huge challenge for her more then the others as she is more distracted. She has been in Dual immersion and struggling to keep up with the double homework I am not sure how long she can keep it up. She is very good at spanish and actually struggles with english so I am unsure what the best move will be for her.

Ahh My fifth a son he has adjusted well to kindergarten however his latest is to tell me he is too tired to go to school. He got an ear infection and the flu and just does not seem to have bounce back very well its been 3 weeks so I am waiting to see they say flu can linger for 6 weeks. I actually had to carry him into school today and I have not had that ever. He discovered a lego book at the orthodontist office the other day and had to have one now he cant wait to get home and look it over again and again.

Last but not least is my flapper she has a huge vocabulary and speaks well like my oldest did. However when she gets upset she flaps her hands and can not talk to you its like her brain is misfiring.  She also at times like when she wants something she repeats it over and over and over like 4 times. Even if you acknowledge that you heard her she cant stop.

Well such is the challenge of my husbands and my life. I love my kids and try daily to met their various needs I just hope that with divine help we can help them succeed to the best of their abilities.

The challenges of starting kindergarten with Autism

Well big surprise school started off crazy. My son was registered for all day kindergarten as I decided I did not want to have to travel to and from the school so much. I also did not want him to be half day and try to squeeze all his ot, social, and other sped services. He already struggles to learn how will he keep up if he misses half the stuff. Well big surprise he did not do so well going all day in the regular classroom so we decided to try him half day kindergarten and half day self contained where he can get all his sped services. This seems to be working for him as he melts down by lunch other then he bit a kid the other day not a real bite just a nibble really lol. When I asked him why he said he was looking at me and blocking the slide. Sigh! do kids just have this homing beacon for kids that are different and pick on them? I volunteered to drive for the senses field trip for my sons class. It was fun the teacher only assigned me my son and another sped boy he is a lot like my son she was worried to do so but I told her I was used to them so it would work fine.

LOL I always wished my son had a twin as then he would have a friend I am not so sure now they were fun to watch and played well till they did not want to do the same thing. Then you have a problem as one goes one way and one goes the other they do not listen well so if one wanders off you cant leave the other as they are not like other kids you never know what they are going to do. So you have to get the one and chase the other and quickly!

It reminded me of when my third daughter was 3 and my second was 5 she would just wander away with whatever had her attention. so I would have to uproot the 3 year old to chase the 5 year old and try to carry the baby. It was quite the challenge many mothers do not understand why I do not take my kids places much well there are several reasons: I have back issues, they tend to melt down, they don't listen well so it makes it difficult to divide yourself to get in each child's face to make sure they understood you.

Well back to kindergarten, my son is really good at math big surprise. However you have to read everything to him. He struggles to stay on the same task for very long. He works better if he has a fidget and a reward that is tangible he does not seem to get implied rewards. He can not handle the noise of the lunchroom. For fidgets he likes those party size playdough and those little balls with spaghetti strips coming off in center like these http://www.orientaltrading.com/halloween-porcupine-balls-a2-25_3355.fltr?prodCatId=551312 my oldest likes a good old stress ball or a worm like this http://www.orientaltrading.com/magic-worms-a2-16_1212.fltr I like these cause none of them are to expensive to replace if lost or ruined :)

A Day in the Atypical boys life

Well I thought I would share a typical day in my 5 year old sons life:

Well my son stays up late like most boys on the spectrum he does not sleep well this has been hard on the hubby and I but mostly me as my husband could sleep through a tornado!

So this said he is generally up by 10-11am, now I know I should wake him earlier we have tried that for a couple weeks straight but all that happens is I get even less sleep as he still stays up late.

He generally does not like to eat first thing but he does like to turn on the tv and watch rescue bots on netflix. I usually just bring him a bowl of dry cereal and he will eat on it then if he is in the mood he will come get milk. After one episode I have him go change his pull up and get dressed. He then finishes eating rarely will he just sit and eat he is constantly getting up. Then he watches another episode well he really does not watch it all he by now is awake enough to play with his cars with the movie running in the background.

If I do not keep my eye on him and have to do something I will walk in to find a box of cereal or crackers scattered on the floor and him mashing it with his cars his favorite activity since he was 18 months. I have tried everything short of buying locking cupboards to keep him out of the cereal it just was not worth it when I found him climbing over the counter and stretching to reach the top of the fridge just to get the cereal down. I have decided now that I am more familiar with autistic behaviors this is probably one of his stims he finds comfort in it. So now I deliberately leave a smaller portion of cereal around so maybe he wont use a whole box.

I have learned if nothing else from being the mom to children on the spectrum you have to pick your battles when possible. If I spend all the time trying to get them to conform to the same expectations for neuro typical children I would have a whole day and night of meltdowns and I am sorry but my sanity is important too. So I do expect certain things from my children mainly the really yucky things are unacceptable and sure to set me off lol like playing with your poop YUCK! Luckily I have not had much problem in this department till I got the youngest girl she does not like poopy diapers so she will play in them if you dont change them right away UGH!

Well back to the boy he as been pretty good in this department and thank goodness finally got trained to at least poop in the toilet. It has been two months since I had to change his poopy pants YEAH!!! He is still working on the urinating in toilet I really feel he just can not tell when he as to pee.

So after he plays with cars he generally wants to play in the sand box with cars even more so out he goes, usually with baby sister in tow, it kinda sucks in winter as I have no place to let him go play while I do some cleaning. I go check on him tons as it does not take him long to get into something I usually will go fold some laundry outside or sit on the deck and read. Usually after an hour or so he wants a drink or something and gets distracted with something inside. I usually have him do ABC Mouse while I make him some lunch and less he wants to help me cook it.

Then he usually turns on another movie like bob the builder and plays with cars again I try to get him to do a puzzle or something new sometimes he will sometimes he wont depends on his mood. We usually end up back outside I try to get him to notice something new in nature daily trying to get him interested in his surroundings not just those cars.

I usually go get the girls about this time and then my life gets to crazy to do much with him and he will usually watch a movie while I try to get the girls to do their chores and homework while I start dinner.

The kids usually play a game together including the boy or watch a movie then they get ready for bed have a story and go to bed except for the boy. He generally is up playing the only way we can get him to go to sleep is to hold him while we watch a movie and it has to be something boring. You can read to him and put him to bed and guarantee he is up playing with cars or doing whatever. I have put him to bed thought he was out go to bed myself only to be awakened by him getting into the fridge. Generally he is up till around 2am when you can finally bore him to death with music to get him to sleep.

Aspergirls

Well shortly after my sons testing the special ed teacher for my second daughter approached me she is 12 and asked if I had her behavior tested. I said for what exactly as she had been tested and they told me the same thing they have told me since she was 5 years old SHE IS FINE! Your just worried because she is normal and your oldest is gifted. Sign! I should have been more forceful I knew from a young age she had some problems but hey live and learn.

Well the special ed lady says well she does not make eye contact I said so she has always been that way that is just her. She gave me this look like I should know better which really I should as I do work with special needs kids but they are really profound so a mild case like my daughter is harder to spot. Then she says well when I try to get her to discuss what problems she is having with math she seems to ignore me for a couple minutes then she might respond or she might not. I said well yeah she has always done that she just takes a bit to gather her thoughts. She asked if I would be ok if they tested her for behavior issues I said fine. So she sends me to go get the screenings she wants to try and WOW big surprise she has me pick up ASQ and GARS and a couple others. I had never filled either of these questionnaires out before. As I am filling them out I realize they are for Autism or Atypical behaviors and OMG!

My second daughter had not smiled before like age 5 much and even then usually her expressions do not match the situation. If I could have used one word to describe my daughter 2 it would be grumpy even from a super young age. She had and still does have weird OCD things she at the age of 2 had played with her belly button so much she could pull it off her stomach. She then moved to biting she was always biting her sister and nothing seemed to help stop her. She sucked her clothes till they were misshapen and sucked her hair. She at the age of about 6 became obsessed with hugs she constantly wanted to hug which she never had really wanted before and frequently shoved people away when they wanted one. It reached the point where I had to limit her to 2 hugs per person per day and only if she asked for one, if someone else instigated it that did not count. Then she moved to chewing her fingernails which was ok till about 11 years old when she chewed the whole nail off down to the cuticle it was bad surprised it did not bleed.

I realized as I filled these out that there was a high probability that I now had another child on the spectrum. I also realized my oldest daughter fit alot of the asperger signs I was shocked she is 15 how could I have missed that I guess I always assumed erroneously that they were like rainman. I approached the special ed department and asked to have my oldest tested as well. Well the Psychologist on retainer for the school observed my daughters and went over the questionnaires she then had me read a couple books before our meeting she said they might help me decide if I think these really describe my daughters. I was amazed at how two girls who seemed very different could really have the same condition.

After reading the books I was convinced that after years of searching we might have discovered why my oldest with an almost genius IQ struggled to pass english mostly due to reading, she does not picture what she reads. My second I finally knew what she needed and why she seems fine one minute and looses it the next. They were probably both aspergirls I was in shock. Well we met with the psychologist and she agreed that they most likely are aspies in the 90% probability range. Why does it take 15 and 12 years to get a diagnoses or even be pointed in the right direction? I had my daughters tested multiple times and yet no one ever mentioned they might have a condition. I guess it happens but I had hoped we had come farther in the last 30 years.

A boy with Atypical behaviors

Earlier this year while talking with my sons preschool teacher asking her how he was doing she said "he seems to not hear us have you had that problem she asked"? I told her I have had his hearing checked multiple times and he always came back normal. She then asked if I had noticed he was obsessed with red I said sure he has liked it for at least 3 years since he discovered Cars. She then asked if I had any other concerns so I told her about his lack of interest in potty training (he is almost 5) and that he did not seem to really interact with others just played by them. She then asked if he had been tested for any learning disabilities I told her he had been in an early intervention program but had tested out of it fine almost 2 years earlier at age 3 he had been tested at the school district. I asked her if I should worry she said if she was me she would seriously consider having him tested again at the school district. I said ok I will set the appointment and I did. He was tested at the school district and as we are sitting there he did his typical behaviors ie talking loudly, hanging all over the tester getting in her space, struggling to say his letters and numbers in order and generally being hyper.
The psychologist was observing all this interaction toward the end he brought in the results. There was some question as his atypical behaviors were just borderline according to the tests done so far plus he had regressed in his learning things he had passed at age 3 he had lost at almost age 5. The psychologist asked if I had time for some more in depth questioning I said yes.  After this questioning was done he excused himself for a few and came back with those results my son was even higher in the atypical range I had no idea what this meant. They brought me an paper on autism and told me I should look into having him screened further by a pediatrician. I walked out of there in a daze I had wondered about the autism for my son but after his first screening at age 3 I had dismissed it since they told me he was normal functioning. I asked my pediatrician about it he said well if he tested atypical at school district and after looking over the results and watching him he said he is probably autistic. WOW what do you do? Well they admitted him to special ed preschool to work with him and he got an IEP.  He made good progress in the special ed preschool and in his transition meeting it was determined he could just be in regular kindergarten with pull out services. I hope this works out for him and he continues to progress.

The challenges of Speech problems

Well I meant to write this a while ago but alas I have been rather busy. My 5th child had ear infections for almost a year straight he was constantly sick. Now I know I have 5 children and possibly should have figured out that I needed to insist they do something more for him but as none of my other children had ear infections I found myself very ill prepared. Well after the year he got tubes put in but alas his speech has been drastically affected and he gets frustrated fast because we cannot understand what he wants.

What I learned from this is never let doctors put you off if your kid has ear infections regularly get an expert involved like an ear, nose and throat doctor. By regularly I mean you give them an antibiotic they finish it and a week later have another ear infection or your child has 4 or more in 7 months or so. Signs of an ear infection can be found here http://www.webmd.com/cold-and-flu/ear-infection/ear-infections-symptoms remember your child may not have all the symptoms or may not tug at ear some kids just seem to always be sick so just use your best judgement. After all hearing and speech are very important to a child so they can communicate with you and others.

We got a local program to help its like an early intervention program they come out to the house and work with you and your child to pick up sounds first then other skills. They help you learn how to step by step guide your child to where they need to be. Ours is Kids on the move and can be found here http://www.kotm.org/ it is better not to wait till they are in school to get them the help they need to be where they already should have been if they could hear. If you are unable to find a program your pediatric doctor should know who to put you in touch with.