CHanges Updates and More

Sorry it has been such a long time since I have posted.  So much has been going on I can actually say it was crazy and finally settled!

Some holes in the raft, to seasons changing, to detours that needed to be taken and quickly diverted back to the main river.  We are all well on the way to much smother waters.  We are able to stop when we want and be able to enjoy the scenery and each other .

Crush has moved on and is now with FBS and went down the wrong streams.  That was the choice he wanted and he made.

Little Bear is doing so much better!  Her behaviors have dramatically decreased.  Her skills that she once had are still coming back.  She is home with me daily as I now home school her.  Recently we had a bathroom modified for her as she refused to get into the bath tub daily for a bath.  She is scared of the bath tub as she has fallen many times even with grab bars and help.  Today Marks the very first day that we used her bathroom for her and all giggles and well I had to convince her it was time to get out of her shower.  She freely gives hugs again, she is interacting with Jonny (buddy) once again.  There is so much progress and new experiences I’m blown away.

Buddy has been doing much better!  I found out that he has been dealing his life with starting stages of Dyslexia, ADHD (combined type), High functioning Autism,  memory problems and other things.  However it is funny because even though he is dealing with on going issues and battles that affect his everyday life you wouldn’t know it!  He continues to grow into a very caring young man with a huge heart of gold.  He is always willing to help anybody out.  He is becoming more and more responsible also.  Our first storm that we got hit with back in the bungalow he went out and shoveled.  Didn’t have to be asked he just did it.   He is doing the virtual schooling at home and he loves it.  Now that everything has been found he is back to holding straight A’s.

I couldn’t be more ecstatic about how well they are both doing!

We have a few additions as well.  These additions have been a huge help in ways people don’t usually think about!

Willie- he came in at 8 weeks old teddy bear.  He drove everybody nuts but using his tongue in our ears (hence his name) He loves to give “wet willies”.  He is awesome with Little bear and will bark at her when she is doing something that she doesn’t belong doing.   He is our alarm clock and very routine.  He is a “mother hen”. Willie is mostly white with gray and black tones.  Very fluffy little thing awesome temperament. He weighs in at 15 lbs. Can you tell he was the biggest from his litter?  IMG_0886

Sassy- She she also came in at 8 weeks old.  She is part Yorkie and Shih tzu mix.  She is an awesome door alarm.  She is aware of what everybody is doing.  She lives up to her name fully.    She is Black with sleek fur with white on her chest. She loves to cuddle and be a lap dog.  She loves to clean up after little bear is done eating. She had a litter of puppies (as you can see). IMG_7913

CoCo- She came in at 8 weeks old as well.  She is teddy bear also.    She is very vocal, very alert so far she weighs in at 8lbs.   IMG_0863

I have also taken up the use of Essential oils to help with many things.  I have used oils before but never seen the results I currently am seeing.  Little Bear loves the oils that are hers.  She knows that they help her as well.  We sleep much better and through the night, we are able to relax better also.   I never knew that there was so many ways to use Essenital Oils!  I have made many items from body butter, scent stones, facial scrubs, foot scrubs, hair conditioner, hand sanitizers  and so much more!  I will do a post about those also.  I will never live without my oils again! (Yes they help that much and they are that great)!

This is to a much better smother ride into 2015!

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You can’t get me!

I”m glad that this  rivers ride and not stranded out in the ocean.  We are able to escape from the bull sharks that like to go from the fresh water to the Ocean and the Ocean to the fresh water and mess with others lives.  At least in the rivers they can’t get us as they can’t survive.

Our family loves the fresh water river as there is more friendly people that we see along our way; We can enjoy it much better and easier as well.  Most of the people that we see will not play the games that these Bull sharks like to play.  1 being a female (FBS) and 1 being a male MBS).    These sharks are horrible.  They try to prey on the ones that are least expecting.  They torment the ones that are defenseless and they try to go for the kill.  They try to break any and all bond that others may have.  These sharks are completely horrible.    MBS tried to play games in hopes that FBS would leave for good and telling her lies and used others to help with the lies and messed with another’s heart.   MBS is just as bad though and caused little ones to have tremendous heart ache, emotional issues that will take the rest of their life to heal from and understand.  MBS and FBS don’t even know how horrible they abused the little ones.   They don’t try to break the chain that is for sure.   MBS and FBS think that it is ok what they do and did.

Crush has went through drug issues, literally failing at school not caring about himself or his life, running the streets and getting in trouble.  FBS never really cared about crush and if she did Crush wouldn’t have done what he did, felt the way he has felt, he would have been on a total different wave.   Crush would have had the correct guidance and discipline,  he would have been taught right from wrong.   He would have never had the chance to do what he did if he received what he needed.  In fact FBS didn’t even see his cries out for help until it was almost to late.  If FBS actually cared the way that she should have Crush would never have gone through what he did and nothing would have been hid.   Crush wouldn’t have been denied to talk to his father for many years.

Since Crush has moved onto our raft he has changed!  He LOVES, he CARES, he has a great heart, he now knows how to enjoy life, Not on drugs, doing well in school, succeeding in life, knows that he now has a support system emotionally, physically,  and so much more.   From all the work that Crush has done for himself I am very proud of him!  He now is proud of himself as well.  Now to keep Crush on this raft and keep encouraging him to continue what he is doing and when it is time for him to build his own he will be ready.  I can see him getting great places and areas in life and all the lives that he can touch!  I am excited a bit for who he will become.

FBS left the state not 1 time but 2 times without saying bye to anybody not even Crush! When she came back he was the very last to know.   When Crush had the guts to say how he felt FBS literally blew him off and acted as if it was no big deal.  FBS truely hurt him!  He was and is so hurt that he said FBS “Your dead to me I never want to see you again”.  Crush has wrote songs about his life and what he has experienced and I cry.  It hurts me to know the pain that he feels and that he was forced to go through this mostly alone.  FBS told Crush so many lies and Crush seen through them and asked about them.  FBS and MBS STILL tried to lie!  Ok so FBS and MBS will never get it we all see it!  FBS and MBS tried to pull a fast one over the rest of us however we are not having it.  We will be going off on our rivers ride to our destination without FBS and MBS.  The little ones there is nothing we can do for them.  They will have to learn on their own and be able to see through things.  We hope it is sooner than later but we can’t help them anymore.

We never know what our ride will bring us to and through.  Holding each other up on the raft and giving the correct tools we can change our lives and our rides just a bit.  When we are there for each other we can over come many obstacles and avoid others many attempts to turn our raft upside down.  Together we will become that much stronger.     Crush has his dreams and a bright future.  We will do whatever we can to support him and his dreams.

Crush:  Crush what you have been through was not for your eyes.  You should never of had to live through all those lies.  We love you more than you know, when we are mad sad or glad we still love you.  We correct you so you know and to help you grow, we will guide you through just put your trust in us and we will be there and see you through.  You are just as special to us as the other 2. Most important you need to know that no matter what we still Love you!  There will be the time though that you must build your raft and set sail, however we will not bail when you decide to set your sail.

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She can! Not she can’t….

Today was a day for reflection.  Not by choice but by what happened today.  Nothing bad really happened (which is a good thing), just daily living in our world in our house.  Today was a day full of cuddles.  Little Bear wasn’t feeling very well.  I gave her some tylenol to help with possible pain she might be having.  She is getting 4 12 year old molars in at 1 time.  She really doesn’t have room for them all because her mouth/jaw is so small.  However we have to wait for them to fully come in before we can do anything to help her.  Her mouth is over crowded and her teeth keep moving closer together.  Her pain tolerance some days is still high so I can’t really tell for sure except for by her behaviors.

As lil Bear and I were cuddling she had her head on my hip and I was rubbing her head then she moved so I was rubbing her jaw.   She passed out.  As I continued to rub her head I was thinking of how far she has come.  This day according to doctors was never suppose to be here.  She was suppose to pass 7 YEARS ago.  I do not wish or hope for that day to come anytime soon.

I have had so many people and doctors tell me that I have to high of expectations for my daughter.  I kept on.  I kept pushing and exposing her to new things as she grew.  I would change up her routine in hopes that she wouldn’t get totally stuck in just 1 strict routine.  She may not be at age appropriate skills and hit each and every single milestone as she should; however she is making awesome progress!   there is no time limit only the one that someone thinks you or your child should have.  We learn everyday no matter our age.

After having been told time and time again on the things she won’t be able to do, I do have to say she has come a long way and can do more than she can not do.

The other day we were at the doctors office.  I gave her directions and she listened.  She walks into the room used the hand sanitizer then she seen the sink washed her hands and dried them; gave me the garbage since she didn’t know where it was.  She was getting busy and I told her she needed to sit and wait….. she did… then up she was again hand sanitizer this time 3 pumps she needed.  Back to her chair she went.  She sat and waited till we were done.  I walked out the door and so did the boys Tara followed right behind.  She stayed by us in the hallway and took it easy on the stairs.    She walked on the correct side so others could get by she waved hi to each person that she seen.

Today after she was felling a bit better she went and got her apron.  I asked her what she was going to do with that she signed “Mom Help please”.  So I went to see what she wanted and she took me to the kitchen.  I signed bake eat or cook? She turned away from me and went to my baking cupboard.   She grabbed my measuring cups and went to the other cupboard and got a mixing bowl (I have certain ones I use for baking).  Ok she wanted to bake!  I asked her what she wanted to make she didn’t know she just wanted to help pour and mix.  So we made chocolate chip cookies together and she loved it!

She wasn’t expected to do much of anything according to the other people.

She wasn’t suppose to walk ….. well she walks and runs

she wasn’t suppose to be able to eat by mouth….. well she is 1 of the biggest eaters in our house.

I have been able to enjoy the things that she CAN do.  I work with her very hard  so someday she will be able to do the things she can’t yet do.  Sometimes I kick myself for teaching her some skills though, like changing her own clothes.  She will change sometimes 10 times a day or till her clothes are all gone from her dresser and closet.  Her closet is locked or the clothes  will be all gone and I have tons of laundry to do.

She likes to try new foods.  She loves, hugs and kisses too she enjoys music, going to the park, playing, playing in the rain and playing in the snow, laying out in the sun, swinging, going down the slides, swimming, vacations, bike rides, jokes, people laughing and having a good ol time, snowmobiling,  car rides, playing with the cat, going to the movies, bowling, cooking and baking.  Horseback riding, fireworks, playing in the dirt but quickly needs to clean up and so much more.   She doesn’t like cleaning house all that much but she will do it.    She loves it when others are proud of her and when she can do things on her own.  She is very sneaky too.

Just because she is disabled in someways doesn’t mean that she is going to be a vegetable. Like I was more than once told.  In Fact she is far from it.   She is very smart for the person(s) that are willing to give her a chance and help her through life, teach her, and reach out to her and play and understand her.   She is tons of fun and has really come such a long way!  She knows what she needs and what she wants, her likes and dislikes in people and things.  She has her way to communicate, good days and bad days.  Really she is like you and I. The only difference is that she is on HER time not your time.   Take the time to get to know someone.  Each child is different and special, disabled or not.

I am very proud of her and who she has become so far! She is one of the very bright stars in my sky!

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Our fights, our battles, Our Victories and celebrations

  experience  through

Our fights, our battles, Our Victories and celebrations

In order to make long horror stories short I have just briefed what has happened in my daughters years of school.  This IS our personal experiences. Please feel free to contact me if you would like to know more, I’m more than happy to share from our experiences.

2003-2004 Tara was in the Oconomowoc Area School district-  I didn’t have many issues to really talk about.  I experienced the educational Deaf and Hard of Hearing teacher went above and beyond, She really tried hard to get Tara the sign language that she badly needed.  The therapists at that time were very good with Tara and did everything that they could.  Oconomowoc had NO issues with me being in the classroom observing my daughter.

2004-2005 Tara was in the Waupun School District.  I cant really say much about this school district other than at that time the special education program was in  the High School.  I didn’t really like that as Tara was not with her peers to be able to learn from them.  But on the other hand is that there was some High School students that did volunteer in the special education program so there was always extra help.  They did sign language with all the children as the teacher and staff members of the special education program had basic sign language.  Waupun WELCOMED parents to stay and be active in the special educational program for the kids with special needs.

2005-2006 Tara was in the Clintonville school district for a very short time for very good reasons.  This school district is worthless and not worth any child’s time.  I would have fought this school district but because I didn’t have to fight about services I didn’t know Tara’s rights or many of my rights.  Clintonville school district  broke tons of laws, didn’t care who they actually hurt, didn’t care if they were doing things the correct way or not.  Clintonville was a babysitter flying by the seat of their pants.  Not worth WASTING your child’s time at this school district. The only good thing that came out out Clintonville school district was that I threw myself into researching Tara’s rights, laws and regulations to be able to fight for our rights in the future.

 2005-2009 Here we are at Shawano School district.  I’m not impressed at all with Shawano School District.  I had to fight from the beginning just to have things modified.  I spent 3.5 years constantly fighting for Tara’s rights and a correct IEP.  This school is NOT worth the stress they put on your family, this school district is guaranteed to keep your child from making progress.  This school district has PROVED that they just want the federal and state funds and not care about the education of a child with special needs.

2005-2006  The school knew that Tara was deaf and hard of haring but they would only give Tara 30 minutes per month for the DHH services.  The OT, and the PT were good but they needed a boost to get along and make progress.  So I wasted 1 whole year fighting just to get things modified for Tara the way that they should be in the classroom.  Then I got the excuse also that “oh well this is Tara’s first year here and we don’t know her very well”.  Half the year has already gone and past. Yet they still didn’t know Tara?

 2006-2007 So the second year comes around that she is in Kindergarten at Shawano School district.  This school year was also wasted because I had to waste it with fighting the district on what Tara needed, even though the district knew themselves. I had taken Tara to evaluations for the DHH services and what they felt that Tara should be getting.  Even after all the evaluations and meetings they still couldn’t get the correct services for Tara.

2007-2008 Now this year  has been hell also so far.  The “paraprofessional” did make rude and mean comments “Tara is like a 2 year old and I’m so past that.”  The school district was told that they can come visit my house and see how Tara is and try to get to know her if they would like.  Tara wasn’t making progress and not wanting to go to school hardly anymore.  So I had to go in and check things out on why she doesn’t want to go anymore.  Well I saw that Tara is not even being reached (Just like the years before) and Tara is in her own little world 95% of the day.  There is no inclusion with this school.  The kids don’t really know her or have the resources to get to know her. I ended up putting in a complaint to the State of Wisconsin against the Shawano School district.  There is no communication between school and home due to the school personnel.  I try to get things communicated from school to home but they  refuse to communicate with me.  Xxxxxx X came up to me one day after I was done getting Tara ready for the school day and she asked me if I would like to go to the Wisconsin School for the Deaf to see what they have to offer for kids that are deaf hard of hearing plus other handicaps.  I said just to bring things back here and try to use them like ideas right.. She said yes.  Then 1 week later things are being spread  around that I’m going to send my daughter to school to WSD.  When I refused and said no and stuck to it then the WSD visit was canceled.   Shawano School District is NOT a place if you want your special needs child to be reached and make Progress.  They fight you on everything even if it is very obvious.  They do not care what is going on as long as they are saving money, they worry about the budget when in an IEP meeting and the cost, they do not worry about what the child needs at all. I was also told by a county worker that “Shawano is not a place or school to be at allIt is one of the WORST”.  Till this day even  after the complaint has been filed there is still nobody that is in for Tara.  Her IEP is still NOT being followed.  The school district is not communicating, or trying get get the process to move forward so Tara can make progress and get an education that she needs.  

 

Thank goodness this year is over!!!

 

June 11th 2008 Graduation from Kindergarten

The children had their graduation today and it was absolutely wonderful!  Tara was very good during the ceremony and Tara’s aide (Julie) was  wonderful with Tara.  Julie has the potential and tries very hard.  She was over all a good fit for Tara because she listened to what Tara was trying to tell her, and she tried very hard to do what she was suppose to do.

 Jonny had a part to do in front of everybody. He did wonderful and made the crowd giggle (Jonny make someone giggle no way) Yeah right who am I trying to “kid”.  What happened was they were al singing a song and it went something like this:  I have a grad etude attitude Yea Yea Yea, I have a grad etude attitude  Yea Yea Yea What are you grateful for ? What are you grateful for? Jonny says “I’m grateful for Chocolate chip cookies”. I have a grad etude attitude Yea Yea Yea, I have a grad etude attitude  Yea Yea Yea!

We came home after the ceremony and we celebrated.  I Made a cake for them and decorated it with Jonny’s Help.  Tara wanted to dig right in and eat it before it was done so I had to “fix” the cake.  We had candles and we sang the congrats song.  One of the days I will not ever forget!

We had a blast and it was defiantly once in a life time experience!  I sat with one of my friends and we were both in tears! Our “babies” are growing up FAST.  Tara and Jonny will be both going into the 1st Grade and growing and getting bigger and bigger.  Time flies when you are having fun, I enjoy being able to watch both my kids grow up some days just go too fast! I will be posting some graduation pictures feel free to stop on by the Photo page to see them!  I’m sure that they (Tara and Jonny) have grown since you last checked the pictures.

 

Well 2008 Summer is now over thank God!  Everything fell through for Tara this summer, so we worked at home on things and did what kids do best.  We played and went shopping and played and we enjoyed every minute of it together. This Summer Tara started to sign a PHRASE “I want _____ more Please”, she started to put her self on the toilet this summer as well.  She can now put her own shirt on also. 

 The School year has now started and Tara has a new Aide, her name is Jill and she is wonderful!  Tara really liked her from the first day and was fine with me leaving after staying half the school day.  Tara really figured her out right away and found that Jill DOES listen to what Tara needs, and Tara has taken Jill to the bathroom each day so far (4 days into school). 

Tonight at dinner time I got the question “Mom does Tara have aussim?” (Mom does Tara have Autism”?) I said yes and then Jonny says because she was born that way right? I said yes and Jonny said I talk and Tara talks well sometimes like “yayayayayayyyyayayayayay”. Right I said yes and Tara also talks with her hands and Jonny interrupted and says yeah I do that also. I said yes. 

So how do we talk to the kids about why some are the way they are?  You explain that it is OK to be different, explain how we are all different in different ways. Example, some have brown hair some have blonde, some wear glasses some don’t and that is ok.  So how do you explain “dis” ABILITIES you explain like this Some people voice box doesn’t work some do, some ears work some don’t and that is OK!  Do this as much as you have to for your child to understand and they will be just fine when they see a child with a “dis” ABILITY. 

 

 

The Sate of WI VS. T Clark/ Kristen Kaun 

June of 2007 Tara went to see if she had Autism.  I took her to 2 different doctors to be sure that there wasn’t a miss diagnosis.  It came that Tara DOES also have ASD  besides the CDCS. So in August 2007 I sent in the papers and the diagnosis that Tara has received by 2 different doctors.   The county worker told me that the state was requesting more information… I ask like what and she said that she didn’t know just anymore information that would have to do with Tara.  So I sent in what I had.  So I wait about 1 month and call the county worker again.  “No I haven’t heard anything yet”, So then I asked if I could call the state and talk with them directly to see what the “hold up is” and the County worker said no you cannot call them, I do not think that I can give that information out to you I will have to call and see if that is “allowed”.  So I went and found all the people that work with the children services of the state of Wisconsin, and called and left messages until someone called me back. Then the county worker called me back (after I had already made about 10 calls). Then I did get a message from Katie (with the state of WI) and she says that they are looking at Tara’s file right now and we should have a decision in a week.  So the week comes and goes and 3 weeks later I call all once again.  Katie told me that the letter is on the way.  3 weeks later still no letter.  So I waited till after the holidays were over (Christmas and New Years).  So I made calls again to the state of WI to see what the hold up is.  Well another doctor said that she does not have Autism (even though the doctor NEVER seen Tara nor did he ever diagnose her in person. He just read reports…..  So then I asked to have it in writing and then I get the run around again.  Finally I got pissed and called and called till Pam called me back and she told me that there is NO letter and it is not appealable.  I REQUESTED/demanded a letter to be sent out to me stating everything that was being told to me.  So they finally gave me a letter (by this time it is August of 2008) and the letter stated that Tara had a stroke and a bunch of other things that were not correct.  So I picked it apart got what I needed and called Disability Rights of Wisconsin to see if they could help.  They were not sure if they were going to take Tara’s case or not but they were in the “background” helping me through everything what the doctors needed to do etc….  Well 1 of the doctors (Dr. Hintz in Pewaukee WI) that diagnosed Tara said ” Who is going to pay me for doing this”?  I was thinking to my self well you are the one that dx’d Tara you should have all this stuff and know this already….  Then The other Doctor (Dr. Lund) in Green Bay WI was ready and willing to get Tara what she needed and was more then willing to do what he needed to do.  So I researched for many many weeks and many many hours for what I needed to PROVE that Tara was Autistic and she had the right to get everything that another child with ASD gets.  So I appealed the decision since the letter said I could and the appeal date was set, but only for 15 minutes!!!! Can you believe that this complicated case and only have 15 minutes?  So 3 days before I was to go to court I received a call from DRW (Disability rights of Wisconsin) Mitch said that he would take Tara’s case!!!!!  I cried!  I was so happy that I was able to get the help that was very much needed.  Mitch was along for a good month and receiving everything that I have found etc…  Then I receive another call from Mitch and he is asking for Tara’s appeal date to be moved due to the allotted time (was scheduled for 15 minutes on the 17th.  So I said ok… So the new date was Scheduled for September 29th 2008 at 10:00 am  but via phone conference.  So put everything on hold as I felt that I had worn myself out of all my energy and everything I had.  So I rested and other things were also happening that were affecting things in the household so I had to pull everything through….. So I was following Jeff ( he got laid off and we were taking the truck back to Menomonie we were in the middle of nowhere and I had no clue where I was, then my phone rang and I  took the call. It was Mitch from DRW  on the 22nd of September.

        Mitch said I have some good news and I said ok, and he told me that the State of WI folded (meaning that Tara and I WON her case)!!!! I said MITCH I’M DRIVING RIGHT now and he said can you pull over and I said no because I’m not sure where I am at and I’m following Jeff to take his truck back, and he told me that he is going to give me the run down and to call him when I’m not driving anymore….. So I did, but in the mean time Tears were flowing like a waterfall, hard to see because I was so happy that all the hard work Dr Lund and I put into  everything worked out for the best of Tara and her needs!  So I texted messaged everybody that I could and I called everybody that I could and let them know the GREAT news!  So the state of WI put it in writing that Tara was put on the waiting list as of September 12th 2007 and she should be receiving intensive in home therapy in less than 2 months!!!!!  So we BEAT the ODDS once again!  Now Tara will receive the therapy that she was to get her whole life so far!  Now I am for sure that when I suspect something to go get it checked out and NEVER listen to anybody and their OPINIONS! Due to others opinions Tara would have lost this valuable therapy that she was entitled to in the first place from birth to 3 years.  I’m sure that if she would have had this while she was way smaller that she would have made more progress then she has already.  But that is ok because now I have the information and I can concentrate more on the issues at hand instead of trying to tackle it all at one time like I did in the past.  1 more year past with 2 major fights and 3 more years of information at least in my head, now to help others that may have been or going through my situation.    So we are celebrating this special occasion September 5th 2008 for a Job well done to Dr Lund and his staff, Mitch for all his help and for Mom for all her VERY hard work well done!

October 6th 2008 After going through mediation and an agreement in place the Shawano School district is not doing what they are suppose to.   They are not using the Picture communication so Tara can communicate her needs.  Things are so frustrating because I have asked for 2 IEP meetings and the school district still has not granted 1; not even for communication and progress and for me to be able to explain to the school what we are doing at home to keep things consistent for Tara to make tons of progress.  The CD teacher doesn’t even know how to teach Tara and she is asking me for advice but yet they still wont follow through with it.

March 11th 2009  Wow this has been a school year so far!

 I have been forced to home school due to not having the money for a costly lawyer in time. 

   Since I am now home schooling (for 1.5 weeks now) both my children they are doing absolutely wonderful!  Jonny knows what adjectives are, nouns, pronouns, verbs and their purpose, telling time, counting money, measuring, addition and subtraction facts, doing great in Science learning about all different animals, history, art, reading, proof-reading and correcting, Just everything.  He is MUCH happier and so much less stressed.  He works on his school work daily and enjoys learning new things and applying them and me quizzing him on what he has learned.

  Tara has shown me that she for surly knows her colors (R, O, Y, G, B, I, V), shapes square, triangle, circle, Tara also knows how to write her name without help, using both hands to do 2 handed activities, dress herself with the exception of her socks and shoes, Tara is putting herself on the toilet and going all by herself, washing her hands all by herself, continues to feed herself, less negative behaviors, Sorting, imitation skills have also started to come out, she is also interacting with Jonny and other peers finally, her communication is coming along much better, she is using her sign language much more, and she is also using her picture communication pictures and getting a AAC device (Machine that has voice out put when Tara pushes a picture button, Tara is also able to listen and follow simple directions!

  As you can see home schooling both my children has been nothing but a positive experience and in the best interest of both my children.  I do feel bad though as I kept trying to fight the school system and not just home schooling my children at a much earlier time. We live and learn though and as long as we learn from our mistakes and try not to do them again is what is important.  As a suggestion, if you are battling the school district you are in, don’t waste your child’s time, your time, energy and putting your child and your body through the tons of stress, SAVE your time, energy and Body and your child and just home school if at all possible.  There are tons more opportunities for your child(ren) to learn the “natural” way =YOU!  Children learn from the parent (s) in the first place, ever since they were born so just continue and reach out for help and advice if you need it.

May 2009

Tara went in to the dentist and Jeff and I had to hold her down since she is still overly sensitive for anything to be in her mouth if she didn’t put it in. She did wonderful with us holding her down and letting the job get done.  No cavities this time! Yay Tara!!!!!

Tara is on the trail basis for an AAC device.  Not to sure how this is going yet but I’m sure that we will find a machine that best fits Tara and her needs.  She does like using the trial one that she has however the pictures are different so it is a bit for her to get used to.

We went on our 2nd actual family vacation.  It was a Blast!  We all enjoyed our time away from our daily everything that goes on.  We met a GREAT wonderful family that we have made friends with.  We hope to keep the friendship growing.  This was a great educational experience as well for the kids and they didn’t even know that they were learning!  We went to the Crater of Diamonds, a place to look for diamonds.  We didn’t find any but it was fun and educational.  We also went to the Old Mill, the Military museum, Arkansas State capitol, searched for the Hot Springs but couldn’t find anything except for the town.  We wanted to see the actual Hot Springs but instead ended up going on a scenic drive.  Must see the photos AR is so beautiful but we MUST have the Air conditioning on while we were there or Tara would let us know it was a bit to warm for her unless she was outside in the water.

December 2009

This year has been very busy for our family.  February I had pulled both children from the public school; system as I didn’t need a crappy baby sitter for my kids for 7.5 hours per day esp. when they were not getting what they needed to get an education.  Both children are now as stress free as they can get for the most part.  They are much happier children and have grown to be closer.  Tara also started her ABA therapy.  It seemed to start out ok but then we came into troubles because I (Kristen) wanted to be more involved with Tara’s therapy and WEAP doesn’t do that until the child is about to go post intensive.  I just wanted to be able to do carry over so it can be more effective for Tara.  Therapists come and go due to not wanting to do what they needed to do for Tara’s safety, 1 got kicked out of the house since they thought that it would be ok to “go off” on me in my own house. Not happening!  Another 1 was told “no cell phone can do therapy for Tara or Cell phone and no therapy for Tara” She chose to keep her cell phone.  It seems as Tara is just a number and just a pay check.  After asking to be involved for many months and we were told ” we do not allow parents to be in the therapy area at all during therapy only during the team meetings” we had enough esp. after the meeting with the county and then the therapists LIE in front of county and say different things. Not happening in our home either. Tara has mastered the use of PECS (picture exchange communication system) now someone that DOESN’T even know Tara is saying ” Tara has a hard time distinguishing between 2 different pictures” now let me fill you in a bit. They “tested” Tara with pictures that she has NEVER seen before nor will use for her communication and that is what they tested her for. To see if Tara will chose the correct picture for her communication. The pictures that Tara has MASTERED are the EXACT same pictures that are in her dynaVox.  They keep saying that Tara doesn’t know this doesn’t know that but if they really knew Tara they would see that she IS making progress and Tara is a VERY smart girl.  Just because Tara knows how to pull the carpet over their eyes, doesn’t mean that Tara can’t do it. Tara just shows what people expect of her.  I expect MORE and demand MORE of Tara and Tara KNOWS it and she will do it!  Tara is NOT a baby and she is VERY SMART! We will be looking for another provider that will PROVIDE the QUALITY therapy that we want for Tara and what Tara NEEDS.  We MUST Be involved as we have been her whole life so far.  We don’t accept anything less!

Tara has been doing great with her home schooling.  She is making progress and LOVES to show off how much she knows.  She is still a stinker at times, but I still wouldn’t change her for nothing. She cleans the table off after dinner, she is starting to sort silverware, she puts dirty laundry down the shoot, she is able to change her clothes by herself, she is continuing to feed herself and is working on feeding herself solid foods.  She is doing great with feeding herself.  For some reason though she thinks that the food off our plate tastes better so she likes to eat off our plates. Boy does that get Jonny MAD.  Jonny says “Mom Tara is stealing my food again”!  HA HA Siblings…

Jonny is doing GREAT with his home schooling and is LOVING it.  He is absorbing everything that he should be plus much much more.

Tara has RECEIVED her OWN DynVox and LOVES it! It has greatly decreased the tantrums, meltdowns as it is her way of communication.

We will continue the fight for Tara as we ARE IN THE BEST INTEREST FOR TARA for THE REST OF HER LIFE. WE KNOW TARA THE BEST AND WILL KEEP IT THAT WAY!

Dec 2011  Well we are coming to the end part here of intensive therapy.  Tara has 3 awesome therapists she has the perfect balance right now.  Tara also started school and they literally handed out the services to Tara.  I was AMAZED by how they are.  Tara Loves it as she RUNS into school each day she is more than willing to get up and get going to school!  She has made a friend her name is Raven.  Tara recently got her hearing aid and she loves that also.  She tries to wear it to bed at night.  Tara’s bus driver told me that on the way Home Tara said “Mom” now I just need to hear it :)  I wonder if she will hold back on me.?  She has been watching my mouth BIG time when talking.  I think she may start talking!  I still have my hopes for her to talk and communicate what she wants needs and feels.  Tara has a great Bond with Jonny and gives him hugs everyday multiple times a day.  Tara LOVES to help clean and move furniture around while I am cleaning. Tara also has a great Bond with Dad (Jeff) when he is home she likes to keep him busy and gives Mom a break.  Tara wrote her first note to us.  I went to the neighbors house for a visit (Jonny was spending the night) and Jeff was busy doing something in the house.  She got her marker and drew a car on the wall next to her heater that she LOVES to sit in front of.  She went out in the car sat in her seat and had 2 seatbelts on.  She was ready to go, she drew a note (which I need to let you know that it was her first legible picture that she drew!  At least she knows that she has to ask and let us know where she is going….. Tara has been doing great with food and ate egg omelet and some toast! YAY FINALLY, but that was at school so hopefully she will bring that home and do it at home as well.   Tara got an Ipad2 and she Loves it! She didn’t want anything to do with her Dynavox still to this day!   So it just sits here getting dusty.  Oh well maybe some day she will take to it. Tara is gaining daily skills and learning how to do daily tasks.  She is making progress and it is beautiful to see!  She is really starting to grow up (which is a bitter sweet) It is Sweet due to the fact that she wasn’t suppose to live past the age of 5!  It is sweet because of all of the doctors that she is proving wrong!  It is sweet because she is simply amazing to say the least!  The reason it is bitter is because she is growing up so fast! 

 

2009-2010 I pulled both my children out of the Public school system and I homeschooled both of them.  My Son Jonny did much better and so did Tara. Jonny did the K12 WIVA program. Tara was denied because of her needs. So she was regular homeschooled.  Both the kids grew and learned so much.  They were able to both get their needs met above and beyond.

 

When we moved they both wanted to go to the public school.  So I let them, they wanted to be by their peers and wanted to give school yet another try.  Hey I can’t blame them in anyway.

 

2010-2011 Home schooled both of the kids.  They made many gains and grew so much.  I enjoyed it as I got to see right before my eyes the progress that they were making.

 

2011-2012 was the first year back for both of the kids to the public school system.  We rolled with the punches.  Wasn’t to bad but wasn’t good either.  Tara started at 1.5 hours per day.  By the time the end of the year came she was up to 1/2 day.  Tara received her therapies the full time that she was at school and had no time for other opportunities.  Jonny was suppose to be evaluated for a possible IEP.  Bonduel School district told me that they do not test for LD or anything that would need an IEP.  He did get extra help in his reading and math.  However he hardly made any progress.  Jonny wanted to try the next school year to see how he did and liked it.

 

2012-2013 Jonny Loved his teacher that he had and Yes I agree she was the best that he had so far.  She spent extra time with him, enjoyed him, and understood him.  No other licensed teacher did that with him before.  If he would of had her this school year I know he would have stayed.  This school year was horrible for Tara.  She was not making any progress, they had no routine, in fact she regressed, started new behaviors that were never seen before, she wasn’t placed correctly (school had her listed as EARLY CHILDHOOD and in the state of WI that is not correct placement.  How they got away with it was to fudge her placement by saying she was in the regular education 5th grade classroom as her homeroom yet she was barely ever in it.  I had to fight for her to be included in the regular education classroom, be able to eat lunch with her regular education classroom, be in art, music and phy ed. I also had to fight for her to be able to go on any field trips that the class would take.  They didn’t want to give her a 1:1 aide even for safety (Tara falls allot) .  School was horrible for Tara.  I fully pulled her out  in February after I found out from the head of pupil services that the staff can not do their job because of me asking questions due to Tara’s new behaviors, and not making progress, regressing, why she couldn’t be with her regular education peers for the “easy” things listed above and why the IEP couldn’t be followed.

 

2013-2014 I will be homeschooling both the children yet again.  Jonny wanted to do WIVA again as he likes that program much better.  We are looking forward to moving forward and the kids getting an education that they deserve and need.  Tara will be regular homeschooled.  She will be relearning the skills that were mastered before she went into the public school system, behavior management, daily skills training, and to be more independent.

 

IF YOU HAVE A CHILD WITH SPECIAL NEEDS SHAWANO SCHOOL DISTRICT, Clintonville, or Bonduel School District IS NOT THE PLACE TO BE!!!!  THEY DO NOT FOLLOW THE IEP and IDEA, section 504, NCLB, or state/federal regulations  .  THEY ARE ONLY CONCERNED ABOUT BUDGET!!  

 

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Mother’s Words

Mother instinct is 95 – 100% correct trust it,

don’t put it off !

Please Read and take this to your school board meeting, PTA meetings, any meeting of the sorts and help other kids that are challenged in daily life. Let’s ALL make a difference in our community!

This week a question was asked by a school official, as to why there weren’t more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, was, “Where are the parents?”

Where are the parents?

  1. They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order for their child’s medical needs can be properly addressed and met. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that is designed to confuse and intimidate all but the very savvy. They are at home researching and learning the laws that hopefully will get their child the services the child NEEDS through the educational system, just so their child can get an appropriate education like other children.  They are on the road taking the child to multiple therapies. Hopefully it will HELP.

Where are the parents?

  1. They are at home, diapering their 15 year old child, or trying to lift their 100 lb. child onto the toilet. They are spending an hour+ at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks and doing what is NEEDED so the child CANSURVIVE.

Where are the parents?

  1. They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, “Is this the time when my child doesn’t pull through?” They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company or a Quality Doctor will not touch their child and they can’t get anybody else willing to HELP.

 Where are the parents?

  1. They are sleeping in shifts because their child won’t sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own or don’t have anybody willing to HELP.

Where are the parents?

  1. They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. Sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

  1. They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything.They are trying to patch their broken dreams together and/or altering their dreams so that they might have some sort of normal life for their children and their families.

The parent(s) are busy, getting the medical and educational help that is greatly needed; sometimes they have to go out of town and state. They are busy, doing the daily living skills for their child that cannot do it themselves. They are, worrying…., wondering….., researching…., fighting…., negotiating…., and trying to keep their family together.   

They are trying to keep their family to survive, fighting the system that does NOT work with the families and children with special needs!  They are educating their child for when they get older and trying to make up for what the schools cannot and bluntly refuse to give. They are at home trying to figure out the future for their child and how in the world they will survive.  We are at home finding people that are willing to help us through the hard times that we are willing to take on with our whole heart and soul. We are at home talking with other parents that deal with the same issues to hopefully find a solution and to be supportive to each other.  We are busy WORKING 24/7/365. Would and do you want to come and help?

Signed:

Jennifer Bolduc – Mother of special needs children

Kristen Kaun Wisconsin– Mother of special needs ChildSue Stuyvesant 10/15/96:  Sue passed away in October 2003.

Michelle passed away a week before she was to turn 18 in September 2005.

 

 

“The Little Things in Life”

It’s the little things that you do in life I pay most attention to Sometimes the smallest insult
Will hurt the most

It’s the little things in life that you do I cherish most
Two flowers stand out In a garden of billions
Two kids pointing at the night sky
Not sure what they’re thinking or looking at
But they too Appreciate the little things in life

It’s the little things in life that You do for me that I love
A quick touch of your hand, a quick hug and kiss
The cuddle time that we get
You Holding me up when I want to fall reminds me that you are the reason why I Cherish the little things in life

One thing I adore most The way you look at me
A little turn of the head While I stare into your eyes
We look into each other’s heart You help me enjoy all the little things in life and give me the reason to keep going and to hold strong.

By: Kristen K

“DON’T QUIT”

When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low, and the debts are high,
And you want to smile, but you frown a bit,
Rest if you must, but don’t you quit.

Life is strange with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don’t give up though the pace seems slow,
You may succeed with another blow.

Success is failure turned inside out,
The silver tint of the clouds of doubt,
And you can never tell how close you are,
It may be near when it seems so far;
So stick to the fight when you’re hardest hit,
It’s when things seem worst
That you must not quit.

Author unknown

“Challenged”

Some say I am disabled,
But you know that isn’t true.
I simply have a challenge
A little different from you.

My slight troubles, have taught me
Things they said I could not know.
Each obstacle is a victory,
Helping me to grow.

I’m not really any different,
I cry, I laugh, I snore.
I don’t want to be treated
As if I’m someone different anymore.

Sometimes I have to fall,
And sometimes I need to cry.

Out of good intentions,
People are afraid to let me try.

My family give me strength, dignity,
and the courage to be all I can be.
For they don’t see me as disabled,
They just see me as me.

Life Lesson #1

Don’t Judge me by the way I am 

 I have a friend I’d like to bring with me.” “Sure,” they replied, “we’d love to meet him.” “There’s something you should know,” the son continued,  He stepped on a land mine and lost an arm and a leg. He has nowhere else to go, and I want him to come live with us.” “I’m sorry to hear that, son. Maybe we can help him find somewhere to live.” “No, Mom and Dad, I want him to live with us.” “Son,” said the father, “you don’t know what you’re asking. Someone with such a handicap would be a terrible burden on us. We have our own lives to live, and we can’t let something like this interfere with our lives. I think you should just come home and forget about this guy. He’ll find a way to live on his own.”

At that point, the son hung up the phone. The parents heard nothing more from him. A few days later, however, they received a call from the San Francisco police. Their son had  died after falling from a building, they were told. The police believed it was suicide. The grief-stricken parents flew to San Francisco and were taken to the city morgue to identify the body of their son. They recognized him, but to their horror they also discovered something they didn’t know. Their son had only one arm and one leg. The parents in this story are like many of us. We find it easy to love those who are good-looking or fun to have around, but we don’t like people who inconvenience us or make us feel uncomfortable. We would rather stay away from people who aren’t as healthy, beautiful, or smart as we are. Thankfully, there’s someone who won’t treat us that way. Someone who loves us with an unconditional love that welcomes us into the forever family,  regardless of how messed up we are. 

Moral  of this story is don’t judge a book by it’s cover, get to know a person before you decide if you are going to accept the person.

“Like Me”

There’s a new kid who’s come to my class.
She’s different from me and she isn’t too cool.
She walks and runs in a funny way
she never comes first in a race,
she forgets which way is first base,
She studies most of the day in a separate class
And they say that it’s called “Special Ed.”
sometimes I don’t understand what she’s said,
her face looks kind of different from mine,
her talking is just sounds
And it makes me feel funny and there’s one thing I know; She is nothing at all like me.

 My mother said, ” I want you to think
When you meet a person different and new
That she may seem a little bit strange, it’s true,
But she’s not very different from you,”

Well I’ve looked at her face;
When he’s left out of games, she feels bad.
when other people tease her, I can see she’s so sad.
I guess that’s not so different from me,
And when we’re in Music, she sure loves to hear music, she likes it just like me!

 I know in the gym she has lots of fun;
She loves to jump, walk, and run.
That’s not a surprise,
‘Cause that’s not very different from me,
She’s always friendly, she pinches me and smiles.
She’d like to be friends and get into play catch,
Which is not very different from me,

Her family really loves her. I saw them at school,
I remember they were smiling and proud and they hugged her real tight and said I Love you,
And that’s not very different from me,
So I said, Hey, you know that new kid?
well, I’ve really been thinking a lot.
Some things are different . . . and some things are not.
But mostly she is really like me,
Yes, my new friend’s . . . a lot . . . like me.

“All I Need”
Ever wonder why you’re the one?
Who was chosen to care for me?

It may not be obvious sometimes
But you have all I need.

I need someone with patience
I need someone who is kind.

I need someone who is strong
not quick to lose their mind

I need someone who is special
someone very special indeed

I need someone who will care,
Someone to care for me

You may never know my thoughts
you may never know my voice

Just please be reassured
that is not my choice.

God knew what he was doing
when he gave me to you

He knew you could handle me
He knew what you could do.

You see I am very special
someone very special indeed

I know that I am not perfect
things I need and can’t get make you cry

I am very aware that you try; you try your hardest

I’m your little girl and I know that you love me for me.

One day you will get me what I need; we will know your greatest intent

But for now I’m just me
No matter how hard that may be

But I am a special person
Someone very special indeed

You’ll never know how glad I am
That God gave you to me.

You see us both are the lucky ones
the lucky one is me I have you to take care of me and you are lucky to have me!

“I am”

for mothers of Special Needs Children.

I am the little engine that did. When on my journey in life, my tracks led
me to a mountain I looked at it
with defeat  I then pondered the obstacle before me, and I then said to myself over and over, “I think I can, I think I can…,” I slowly started climbing the mountain saying over and over, “I know I can, I know I can,….” and  I
made it over that ominous diagnosis and continued my journey. I am the little engine that did.

I sometimes feel overwhelmed in my “houseboat” — 365 days and 365 nights a year, constantly working with and teaching my child. But when the storms of isolation and monotony become most 
unbearable, I do not jump ship. Instead I wait for the rainbow that is promised to come.

I am Xena.  With my steel plated armor I  can battle anyone who gets in the way of progress for my child. I can overcome the stares and ignorance of those without a disability in their
lives – and educate them as to why my child is the way she is, and why she does the things she does. With my sword of persistence, I can battle the schools to have them properly educate my child. Yes, I am Xena – and I am prepared for any battle that might come my way……

I am beautiful. I have hairy legs because I get no time alone in the bathroom, and bags under my eyes from staying up all night with my child. The only exercise I get is the sprint from my house to my car – to take my child to therapy. Dressed up to me is, well – just that I had a moment to
get dressed! They say that beauty is in the eye of the beholder – and so even on the days when I don’t feel very beautiful – I will know that I am…….. because God is my beholder.

I am the Bionic Woman. With my bionic vision – I can see through the disability my child has, and see the beauty in her soul, the intelligence in her eyes — when others can’t. I have bionic hearing – I can look at my child when she smiles at me, and hear her voice say, “I Love You Mommy,” —
even though she can’t talk. Yes, I am thankful to be Bionic.

I am Mary, A not so well known mother, of a Special Needs child. Who was brought here to touch the souls of those around her, in a way that will forever change them. And it started with me. By teaching me things I would never have known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters in life. Things like the Joy of
just living in the moment, the Peace of knowing that God is in control, never losing Hope, and knowing an unconditional Love that words cannot express. Yes, I too am blessed by a special child, just like Mary.

I am Superwoman. I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to rescue my child from danger. Oh yes, without a doubt, I am Superwoman.

I am Moses. I was chosen to be the mother of a Special Needs Child. I may at times question whether I am the right “man” for the job —but God will give me the Faith I need to lead my child to be the best she can be. And like Moses, God will give me the small Miracles here and there, needed to accomplish my mission.

I am Stretch Armstrong – a mom that can be stretched beyond belief and still somehow return to normal. I can stretch limited funds to cover every treatment and therapy that insurance won’t. I can stretch my patience as I bounce from doctor to doctor in a quest to treat my child. I can stretch what time I have, and share it with my friends and family.

I am Rosa Parks. I refuse to move or waiver in what I believe is right for
my child –simply because my view is the minority, not the majority. I refuse to believe “What can one mother do?” But instead, I will write, call, and rally to the government if I have to, and do whatever it takes to prevent discrimination against my child and ensure that he gets the services
he needs.

I am Hercules, the Greek goddess known for strength and courage. The heavy loads
I must carry would make others crumble to the ground. The weight of Sorrow, Fear at uncertainty of the future, Injustice at having no answers, and the Tears of despair, would alone possibly be too much, — even for Hercules. But then the Joy, Laughter, Smiles, and Pride, – at my child’s
accomplishments, – balance the load to make it easy to bear.  

I am touched by an Angel, an Angel who lives in a world of her own. And it’s
true. She lives in a world of innocence and purity; world without hatred
or deceit. A world where everyone is beautiful and where no-one is ugly. A
world where there is always enough time; A world where she goes to bed with
no worries of tomorrow and wakes up with no regrets of the past. Yes, I most
certainly am touched by an Angel, and in some ways, her world is better….

I am a true “Survivor” – the mom of a child, who has faced, is facing, and
will face, –some of the most difficult challenges life has to offer. I am
ready for the challenge and have God given endurance to last until the
end, — along with a sense of humor to cope with all the twists, turns, and
surprises along the way. Oh yes, I am a TRUE “Survivor” – and I don’t need
to win a million dollars to prove it!!!

I am a mom of a special needs child, all the above, and so much more.
Some day’s I will want to be none of the above – and just be a typical mom
with a typical child, doing typical things. On those days I will know it’s
okay to be angry, and to cry, and to lean on my family, friends, for
support. Because after all, —the most important thing I am is
human.

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Autism expalined

What is it?  Autism is a developmental disability that affects a person’s verbal & non-verbal communication, understanding of language, and socialization with peers.  Other characteristics include: engagement in repetitive activities, resistance to environmental change, and unusual responses to sensory experiences.  The range of severity can be from extremely mild to severe.  Autism is a behavioral disorder, NOT an illness or disease.  It typically appears by age three and is a lifelong condition.  There is no known cure.  Although autism affects the functions of the brain, the specific cause is not known.

What are the warning signs/ symptoms? 

Autism Symptoms
The severity, frequency, and grouping of the following symptoms will determine where (if at all) an individual will fall on the autism spectrum

• Repetitive behaviors (may want to watch the same DVD or video over and over again) 
• Unresponsive to commands or questions (“in their own world”)
• Lack of imitation of others or imaginative play
• Indifferent to the feelings of others
• Hypersensitivity to light & sound (covers ears when music is played or covers eyes when going outside)
• Self-stimulatory behaviors (e.g., rocking, jumping up and down, hand flapping)
• Echolalia (Repetition or echoing of a word or phrase just spoken by another person)
• Unusual emotional responses (inappropriate laughing or crying)
• Frequent temper tantrums (described by many parents as “meltdowns”)
• Responds adversely to physical affection, hugs, kisses, etc.
• Shows no interest in making friends
• Does not initiate conversation
• Very poor diet (may eat only starches)

 
• Frequently walks on tip-toes as a toddler
• Socially withdrawn or socially awkward
• Shows little expressive language
• Clumsiness (falls or trips often)
• Delayed speech & language development
• Improper use of pronouns, statements, and questions
• Unusual tone or rhythm of speech
• Self Injurious Behavior (head banging, scratching/biting self)
• Frequently makes irrelevant remarks
• Difficulty with abstract language and concepts
• Be preoccupied with one or only a few narrow interests
• Need for sameness (adheres to routines)
• Severe tantrums when routines are disrupted
• Shows an attachment to unusual objects such as car parts, branches, leaves, etc.
• Fascination with spinning objects or spinning one’s self
• Very good at rote memory tasks such as repeating lists of items or facts

Here is a checklist that you can print off if you would like and take to your dr.  The evaluation paper work is very intensive. So is this check list but it will help you.   

http://www.autismwebsite.com/ari/about/e2.pdf

This is an assessment scale/screening questionnaire This is one of the ones that I used:

http://www.childbrain.com/pddassess.html

Here is a great site that talks about heavy metals Must read Very interesting!

http://www.diagnose-me.com/cond/C15891.html#G605

Here is another great site to learn about Autism

http://www.autism.org/

Then after I did the quizzes and tests and everything else to decide if she should see a DAN! Dr. I did all the research that I could about Autism.  I also bought a few books that were very helpful the school staff even borrowed them to educate themselves.  Please check back for the titles! The titles are on the tips page on the left hand side going down the page.

What is it like to live in the life of an autistic person? here are some examples:

Your in a store (walmart super store): Lights are flashing, people are yelling, music is blaring, kids screaming, registers beeping, carts squealing, freezers and refrigerators are running, meat slicer is going, things are falling (dropped), doors opening and closing, people whistling,  warm in 1 part cold in another plus, peoples smelly perfume and colane and much much more.

You and I can ignore these types of things, others can’t (kids with Autism).  When the brain wont let you ignore these things and filter them out, you get frustrated and angry cause you want it to stop but you cant get it to stop.  Since it is hard to ignore all these things going on at once I may have a meltdown, and I may throw a fit….  This is not fun at all.  Sensory overload is the main reason why I have a melt down…..

Below is an activity that I would like you to try.  This is how some people with ASD see things sometimes, these could be animated just slightly they may also not be. You make the choice and decision.

countTheBlackDots

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CdCS

Cri Du Chat Syndrome

History

In the United States, approximately 50 to 60 children are born with 5p- Syndrome (five p minus), also known as Cat Cry Syndrome or Cri Du Chat Syndrome. 5p- Syndrome is characterized at birth by a high pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications. “5p-” is a term used by geneticists to describe a portion of chromosome number five that is missing in these individuals. Children born with this rare genetic defect will most likely require ongoing support from a team of parents, therapists, and medical and educational professionals to help the child achieve his or her maximum potential.  During the early 1980s, research revealed that those raised in family settings with the benefit of intense early intervention programs made remarkable progress, far exceeding the expectations of doctors who first described the syndrome.  Nearly all children with 5p- Syndrome have poor muscle tone when they are young. A small number of children are born with serious organ defects and other life threatening medical conditions, although most individuals with 5p- can anticipate a normal life expectancy. Cri-Du-chat syndrome (CDCS) is a relatively rare chromosome disorder affecting approximately 1 in 37,000-50,000 live births.  A deletion occurs, when there is a loss of material from one chromosome because of either one break (a terminal deletion) or two breaks (an interstitial deletion). Recent molecular research has further highlighted a ‘critical region’ on chromosome 5 (5p15.2) that appears to be specifically involved in displaying the classical features of Cri- Du- Chat syndrome. If the deletion breakpoint includes this ‘critical region’ the characteristic features diagnostic of the syndrome will be present. Usually the loss from the short arm of chromosome 5 is purely accidental and thus the risk of recurrence is very low, no greater than the original risk of 1 in 37,000-50,000. In 80-95% of cases, the genetic material is lost from the end of chromosome 5 (terminal deletion). When the parental chromosomes of the children with terminal deletions are found to be normal, the deletions are referred to as ‘sporadic’. However, in 10-15% of cases this deleted chromosome is inherited from a parent. When this occurs the risk of having another affected child is much greater than when the syndrome results from a sporadic deletion. It is also important to note that a growing number of studies have described individuals with 5p deletions outside the critical region. Diagnoses most often these individuals present with the cat-like cry from which the syndrome derives its name but not severe learning disability or significant developmental delay. These studies highlight the importance of careful and accurate differentiation between deletions that result in the typical CDCS profile and those that result in an atypical, milder profile. At birth, the main clinical diagnostic feature of the syndrome is a high pitched, monochromatic ‘cat-like’ cry that is always present in the new-born but may disappear with age. Other features include a round, full face (“moon face”), widely spread eyes (hypertelorism), an extra fold of skin at the inner corners of the eyes (epicanthal folds), a flattened and widened nasal bridge and ears that are positioned low on the head. Most children with CDCS will have feeding problems from birth including failure to thrive, poor sucking and slow weight gain. They may also be some medical complications but these will not affect every child.

    Feeding concerns in childhood          

Children with CDCS need vitamins, minerals, protein and carbohydrate just like other children. Difficulties in sucking, swallowing and chewing Often, lead to a prolonged use of pureed foods and delayed introduction to solids.  However, as with other children with feeding problems, the initial cause of the problem, can be followed by persistent, difficult to correct behavior patterns. It is therefore, crucial that parents and doctors can be advised to be alert for the signs that their, child is developmentally ready for the introduction of soft, mashed food, then finger, feeding of large pieces of food which are soluble in the mouth to prevent choking, next finger feeding of smaller pieces of food and on then to more textured food, from the family’s meals. Any parent or career anxious about a feeding problem should seek professional advice. There may be a simple solution to the problem, but if not then an interdisciplinary assessment of the developmental, nutritional and behavioral aspects of the problem will aid the drawing up of a treatment program.  We have also found that even though many parents experience feeding problems with their infant or child leading to concerns about compromised nutritional status, the blood levels of a whole range of important nutrients appear to more than adequate.  With these findings, we hope that parents will be reassured to know all your efforts in trying to ensure the provision of adequate nutrition to your children are not in vain.

Feeding concerns in infancy 

         Several recent studies have reported that feeding difficulties in infancy are very common in CDCS children. In one study, 63% of parents reported that their child had had feeding difficulties in the neonatal period, associated with poor sucking (47%), reflux vomiting (42%) and failure to thrive (47%). Some parents have also reported that as a new-born their child had been unable to suck and breathe simultaneously.  Poor muscle tone (hypertonia) can also cause a poor sucking response. The baby will have a weak suck and milk will leak from the mouth making it very difficult for the baby to take in enough milk to meet energy requirements.

Feeding Options

Tube feeding may be necessary to ensure that the child does not fail to thrive while the sucking response is poor. Tips which have proved helpful with babies with a poor suck include making sure that the infant is wide awake before attempting feeding, extra support for the infant during feeding, and supporting the infant’s chin during feeding to help steady the jaw. Parents have reported very varied responses by the medical profession to these feeding problems in infancy. It is important that parents ask for help if it is not offered. Although medical staff may have little or no experience with infants with CDCS they will have extensive experience in dealing with hypotonic and low birth weight babies with feeding problems.

Early Developmental Milestones

Most children with CDCS will reach their developmental milestones later than typically developing children but with the help of intensive early therapeutic interventions, most children will eventually reach major milestones including learning to sit up, crawl, walk, and eat independently.  What is important to remember is that every CDCS child is unique and not all children will perform at the same level at exactly the same time.

Motor difficulties

The majority of CDCS children will experience some problems in motor control particularly in skills that require the use of motor co-ordination (e.g. walking, dressing and feeding self) and fine motor skill (e.g. holding a pencil). There is now growing evidence to indicate that the majority of children will acquire some degree of mobility and dexterity. For example, many children are able to sit independently and to feed themselves to varying degrees.  Walking is also achieved by many CDCS children, although almost all will experience co-ordination problems which make them appear overly clumsy.   Both children and adults with this syndrome are usually friendly and happy, and enjoy social interaction. With early and consistent educational intervention, as well as physical and language therapy, children with 5p- Syndrome are capable of reaching their fullest potential and can lead full and meaningful lives.

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