CAS, SLP, IEP, OT

So many initials so little time.  So we had parent teacher conference last night for Hayden with her teacher and her speech therapist.  They are going to recommend the occupational therapist to evaluate her.  She lacks strength in her body as well as her mouth.  So along with the CAS she also lacks strength in her mouth to make the words too.  They were waiting for her to develop more of an attention span before they started the ot so that she’d benefit from it.  So now there is going to be more people assisting Hayden to find her words, which is a good thing.  Whatever will help her I am all for.

We go next month for the IEP review.  I was not present for the initial review and neither was her father as we were not aware of what was going on.  Her grandma took her as it was explained to me by her dad just a evaluation.  He acted like he was doing it all only to find out she had an IEP and he never told me (no, no animosity here).  I on the other hand never knew one existed until I was able to get my hands on it to find out he never took her to begin with.  So now I’ll be able to sit down with the school and find out what it really means.

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I miss my baby!

I miss my baby when she is gone.  You see her father and I are seperated (hopefully divorced soon) and we “share” the kids.  We each have them for a week at a time.  While I agreed to this in the begining I then changed my mind.  I wanted them with me all of the time, I wanted them to be with their mother who can be there to pick them up everyday after work.  Their father can’t, he tries but his work schedule won’t always allow it so his mom occasionally picks them up.  I picked a custody battle with their dad and he fought back.  At the result is that while we are both good parents he may win out in the battle because he is 2 blocks from the school they go to, blah blah blah.  I think that young kids should be with their mothers as long as that person is a good person and is a good mother!  And young girls should be with their mother, I would love to see their dad explain female issues to them when they ask.  While I won’t say he ‘s not a good dad, they should just be with me.  I can’t have my girls visit me, I am their mother!  So with the possibility of losing a custody battle I am settling, I am settling for seeing my girls every other week for a week at a time.  While not optimal, this is the least I will accept.  And I understand it is not what I was fighting for, I wanted them with me all of the time.  I wanted to make sure they had stability, they knew who was picking them up everyday, they have structure, and they have a good meal on the table everynight.  I know he tries his best but chicken nuggets and french fries are not the best to be giving kids all of the time.  No this is not the situation I would like to see but these are the cards I am dealt. 

Its just a weird feeling that every other week I’m a mom and the other weeks I’m not.  Last week I had to have them to the babysitter on time for Hayden to be picked up by the bus, I had to make lunches, I had to pick them up from the babysitter on time, I had to make dinner, I had to do homework, get baths, get to bed, grocery shop, laundry, etc.  This week I can do what ever I please, come and go when I want, stay at work late, don’t even have to make dinner if I want (although the other half may not agree with that).  I have no responsibility this week to my girls, they are their dad’s.  These are the weeks I don’t have to be mom!  While on one hand kind of fun the other hand sad!  Its fun for a minute to take a break from the hustle and bustle but then I realize they aren’t there!  The worst is at night that they aren’t there to hug, kiss, and tell them I love them and tuck them in their beds.  And then to not be able to wake them up in the morning and do it all over again.  The worst is to think that if this doesn’t all pan out with the custody, I may only have them one night a week and everyother weekend rather than the every other week I at least have now. 

I especially miss Hayden.  My oldest, Sydney, is 6 going on 16 and is just like me (my mom finds it hilarious).  She is the type that doesn’t need anything from me, she is miss independent.  She was 6 weeks premature and hasn’t stopped yet.  She is my social butterfly, and doesn’t care who she is with or where she is at she’s happy.  Hayden on the other hand is the opposite, she’s the one I want to proctect, the one that needs help and looking after and hard for me not to have with me.  Its hard because even though she is almost 4 it is like she is still 2 just in the way she is and acts and does things.  And she’s my baby, she’s my yougest.  (It is fun to try to explain to a 6 year old that she’ll always be my baby no matter how old or how big they get, she kind of doesn’t get it). 

While I do take advantage of the weeks I don’t have them and it is a break from the hustle and bustle of it all I would rather have them with me.  But like I said these are the cards I’m dealt at this time and I just wait till I have them with me again to hug and kiss and tell them I love them.

Hayden’s Journey

Pregnancy was pretty normal with Hayden.  I had my first daughter 6 weeks premature and the doctor doesn’t know why.  So with Hayden they watched me pretty closely and towards the end every check up I was hooked up to the contraction and heart rate monitors just as a precaution.  Also as a precaution I had a very intensive ultrasound at 20 weeks.  Then a few weeks before she was born at a check up the doctor thought my fluid was low so the day after Thanksgiving they searched around for a place to get an ultrasound done but everything was normal.  I was scheduled for induction on her due date if I didn’t go before that, the doctor didn’t want me to go past it.

So we go in and get the last bed in labor and delivery at 5:30 on a frigid December morning and get ready to have numero 2.  Thinking this will be cake compared to the 2 weeks I spent in and out of the hospital with numero 1.  They start the pitosin and nothing, so they crank it up, and the contractions kick in but Hayden’s heart rate drops.  They back off the pitosin and her heart rate comes up but then the contractions drop.  We played this game for a while.  Doc decides to break my water to see if that gets things going.  Nope.  So they decide to crank up the pitosin and get this kid out.  Except I have tree trunks for legs and cannot feel a thing!!!  So they whisk me off to emergency C-section.

They finally get her out and all seems well.  However, she is not able to keep her body temperature up so she is constantly being checked and put on me to snuggle.  They do take her down to the NICU for a time too to put her under the warming lights to help out.  On her first night we finally get her home she pukes up every feeding.  The next day she has a check up with the pediatrician who decides to put her back in the hospital because she is slightly jaundiced and they want to make sure she is keeping food down and that it doesn’t get worse over the weekend.  Of course we go back and first thing to make me feel even worse about the situation is that the hospital checks her in as a boy.  Wrong!  Then she decides to keep most of the feedings down for the nurses.  Great…what am I doing wrong.  Then bingo about 3am she pukes every thing up on a nice young nurse who fed her.  Okay…I’m not crazy.  She does better and they send her home the next day.

At about 2 months old she becomes colicky.  We tried different formulas, different ways to lay, be, etc.  The only thing I can do to calm her is basically rock her and keep her asleep all of the time.  I even try investing in one of those crazy contraptions that the baby lays in like a hammock that you wrap around yourself so then your hands are free to do things.  Yeah…I felt absolutely silly with this thing on and was scared to death to do anything around the house for fear of her falling out.  So I just rocked with her in the rocking chair or stood in the middle of my living room.  When I mentioned it to the pediatrician he thought it was acid reflux so he put her on liquid zantac saying if it wasn’t that trying this wouldn’t hurt but if it was she’d be a different child by the end of the week.  And boy it worked, she wasn’t 100% better but much.  Once she hit 4 months and started eating the horrible horrible cereal babies start on she was taken off the zantac and seemed to be better.  Think again!  Then she started puking up after every feeding.  So then we went to the formula that thickens when they digest it and nothing really seemed to work.  I just got to the point where I just had millions of burp cloths around and lots of extra clothes on hand (for her and me).  Doc assured this would go away as she got older that the valve closing the stomach wasn’t strong enough.

And it did get better.  Once she really started eating solid foods it got better.  Once she really found solid food it was like she couldn’t get enough food.  But then she would get to the point of not chewing her food and just shoveling it in that she’d choke and puke.   We’ve had a few embarrassing puking episodes with her at restaurants and out in public with this.  But today she is a little better with this, still have to watch her and how much she puts in her mouth as she just keeps putting pieces in and not chewing what is in there.  Now she is to the point though where she’ll just spit it out.  Oh and then there is the car sickness.  I used to have to drive her 45 minutes in the morning to daycare near my work.  We’d get a mile away from the babysitter and she’d puke.  Besides the horrible drive I also believe it was the milk and breakfast in the morning that was doing it.  So we switched to her having juice in the morning and she’d get some dry cereal in the car on the way and that seemed to help her.

Other than this she did everything she was supposed to at pretty much the age she was supposed to except talk.  By age 2 all she pretty much said was dada and papa.  Papa was weird as she wanted nothing to do with her 2 grandpas.  At her 18 month check up the pediatrician suggested that at 24 months if it wasn’t improved we needed to look into speech therapy.  I was sort of baffled, how do you do speech therapy on a 2-year-old who doesn’t speak?  But 24 months came and went with no improvement.  So at about 28 months we took her for an evaluation and they suggested speech therapy 1 time a week to start.  But I waited it out a few more months hopeful that she would just start talking.  I heard parents say that their child really wasn’t saying anything and then one day boom!  So I was just hoping and wishing that would happen with Hayden.  Nope!

Of course speech didn’t go real well at first, she wanted nothing to do with it and was terrified of the therapist.  Of course they were male and she had something against strangers to begin with especially males.  The place finally changed to a young female therapist and she did a little better.  Also we had grandma take her and she seemed to interact with the therapist more when I wasn’t there for her to cling on to.  I finally pushed for them to tell me what was going on and she said childhood apraxia of speech.  The therapist said they don’t like to give that diagnosis at such a young age but that is what they were seeing.  But that is how they were going to treat her.  Hayden did get to the point where she was having therapy 2 times a week, but I was not seeing any improvement, the therapist said they saw it, but I did not.  Her dad checked into a special education/early start pre-school in the school district.  After an evaluation with them she started there every day after her 3rd birthday.   I have seen some improvement with her as far as her socialization and her speech but obviously she is not 100%.

So that is the jist of her almost 4 years of existence.  She is my “special” little girl who breaks my heart because she can’t talk to me.

Hello world!

I’m begining this blog for my daughter Hayden who is almost 4 years old.  She was “diagnosed” last year at 2 1/2 with childhood apraxia of speech.  The speech therapist said they didn’t want to diagnose her with that at such a young age but that is what they were seeing.  I am doing this for her because she is locked in her own world.  Some times she seems here with the rest of us and other times off in her own land where she doesn’t have to try to communicate with the rest of us.  The rest of us who don’t really understand what she is saying.  She has a few solid words that she says, but most are “hayden speak”.

I hope with this blog to connect with others – parents and professionals – regarding childhood apraxia of speech and finally deal with this condition and help my daughter find her words so she can come out of her world and join the rest of us.  As well as put out my experiences with this condition and my daughter and take us both on a journey to help her.