Question

Hey ladies, I haven't posted in a long time on this blog.  Our focus has been shifted to my husband for the last few months, he's been battling small bowel cancer.  Things are looking a little on the up and up in that department and I've been able to shift more of my attention back on my girls medical/therapeutic needs.

Reagan, my 2.5 year old, is doing really well.  Her microcephaly is still present but it seems the main thing it has effected is her balance... which could also be because of the mild CP.  At any rate, right at this moment we are very happy with her progress.  She's eating, saying 2 word sentences, walking, and identifying objects.  Hurray.  We know success is volatile with kids, but we're very happy she's in a good place right now -especially with our extenuating family circumstances.

Jaylee, my 7 year old, is the one I need your advice about.  They have retested her hearing and she qualifies for a personal FM system, which I think will be of immense help.  I've joined an ADHD support group here in Atlanta and have been getting great ideas for positive reenforcement, organization skills, and daily functionality (if any of you are interested I'd be happy to post).  However, the common thread that has occured at these meetings is the difference between ADHD and LD's.  OR the fact that they can both exists and exacerbate the other.  Jaylee is struggling in school, we know she has a cognitive delay, but I'm concerned that that's not the only issue.  She eventually learns the subject, albiet it takes her 3 months, she eventually grasps.  However, that 3 month gap is really effecting her confidence and such at school.  She also struggles with social cues.  Sooo.... we're doing our best to read about ADHD and social helps, we're also wanting to get her tested for any LD's. We've been working with the school system regarding her cognitive delay and it's just getting nowhere.

There is a wonderful program in Atlanta called "Beyond Words."  It works with the kids individually and in group therapy to find good coping strategies, teaches them social cues, and helps us in our daily parenting to reenforce those coping mechanisms.  Plus, it's legal health documents that will help us with our fight to get classroom modifications at school.

Here's the kicker.  They don't take insurance and just the evaluation alone is $560.  That's not including therapy or family sessions or anything on a routine basis.  They have a fantastic summer day camp for ADHD/Autistic/ADD/PDD but for every two weeks it's $860.  Ouch.

So, my fellow Tulip Moms, do you know of any financial grants out there that we could apply for? Any lottery numbers you feel good about? (haha)  Both my husband and I feel like Jaylee (and by extension, our family) would greatly benefit.  Do you know of any savvy ways to talk to the programs about financial plans? Or proposing payments?  I haven't hit the "we don't take insurance" or the "insurance doesn't cover this" bump like a lot of you have in the past... this is our first time..... help?!?!

Stemming

Hi everyone! It's the MIA lady! I've been so busy lately that I haven't had much time to post anything. Plus, I feel guilty that I haven't had time to read others' posts so I just stayed away.

I'm sad today. I feel like I'm going crazy sometimes in my attempt to prove to the world that my son has Autism. I go back and forth between convinced he has Autism and really unsure. We still have no official diagnosis. When do I push for this? It drive me insane!!! I can't tell you how many times I hear, "He can't be autistic! He communicates so well!"

Over the last month or so, Marshall has been shaking his hands. He used to only do it when he was frustrated and couldn't remember what he wanted to say. Now he does it ALL the time! He holds his hands up at about shoulder height and shakes them out to the side of his body. He does it more while jumping or taking big steps around. I don't know why he does it. It must be a form of stimulation. His OT is trying to figure out what what he needs to compensate for. When my friend asked him why he does it, he said to get the itch off. She asked him where the itch is and he rubbed his hand over the back of his neck and shoulders and arms, and front as he showed her where it itches.

This week, 2 grown men have mimicked Marshall and I do not find it funny at all! Our downstairs neighbor did it right back at him as Marshall was saying that he had been waiting a billion hours for them to come outside. Then yesterday, Marshall was jumping and flapping his hands, and the guy whose kids I babysit shook his hands out exactly the way Marshall does. He said, "Hey Marshall!" and then flapped his hands. I don't find it funny. I don't know why they would do that. It just makes me sad.

One more thing... we have great news! The BEST NEWS IS: MARSHALL SLEPT THROUGH THE NIGHT FOR 2 WEEKS NOW!!!!!!!!! I'm so happy!

What Is Up With Our System???

Okay, having gone through the special education system here in my county with four children now I am FED UP! It started with our five year old when she was 2. Interestingly enough is in kindergarten not on an IEP despite the fact that her social skills are at a two plus year level. She seeks out adult approval, has trouble making new friends, cries and hides under the table whenever I go in to volunteer and does not want to go to recess, ever! Luckily she had a mommy who is very persistent and found her help in other places when the school system failed her before...but now I have three other children with similar issues.  And I feel like I have to fight to the death to get any help or services.

We had my eight month old evaluated today by Early Intervention and he tested out at cognitive 6 months, Language 4 months, receptive skills 4 months, social emotional 6 months and he still does not qualify for services. WHAT!? Can someone please explain this to me.

They are calling him "mildly" delayed and really did not have many suggestions for me on helping him respond to his own name and his reflection in a mirror. He currently makes no consonant sounds or babbling words and he looks physically like a five month old. The only suggestion they had was that maybe he was sleep deprived and we should give him melatonin like we do the rest of our children. Nice Nice ladies but help!!!! Does anyone have any ideas?

I hope my daughter's pre-school eval this next month goes a little better seeing as how all she wants to do ALL DAY LONG is jump off of our couch or her top bunk...over and over and over. And half the time I find her without any clothes on.  Does anyone else's children not understand why they have to wipe?  or why it is important to wear shoes or a coat in snow?

Why is my heart still breaking every time my four year old son screeches like a dinosaur, covers his ears at music, hits his head with his hands, rubs his head across the carpet with both of his sisters. I thought I would grow in accepting things as they are. Will he go to school next year without any extra help? 

I am asking myself again today after meeting with "experts", how many other children are falling through the cracks because of budget crunches in the system?  How many others are missing help early on and getting worse because they aren't bad enough off? And why in the heck did they repeal the law that allowed tax credits for disabled children?  How much more do they want us to pay out of pocket? ARRRRHHHG.

Overwhelmed...

Okay right now I am being reminded why I am not a big fan of holidays. Any holidays. My oldest daughter has been crying all day because she already misses her teacher and is sad they're taking a "long winter nap." She thrives on routine so this next two weeks could get ugly. My other daughter is biting her sister because there was only one popsicle in the freezer. GO FIGURE...it is a blizzard outside and they are fighting over frozen food.

Last year we had just finished another ear surgery at Primary Children's on December 22nd and today we got some sobering news. I took three of us in to our family doctor and here are the results. Our six month old has his second ear double ear infection with fluid in the last month. He is recommending a specialist and surgery.

Our three year old has a congential defect we just found out about. A couple weeks ago a strange bump showed up on her neck. Come to find out all of the green goopy sinus infections and the bump are related. A cyst as a result of unclosed sinus passages???? Haven't researched this yet. Anywho, surgery number two and appointment number two with Mr. ENT, since it will never go away on it's own unless removed. Our four year old has an appointment with Primary Children's in January to get his genetic issue fixed, and yep...surgery. I am so sad for all of them because I know how traumatic this has been in the past and I know they are in pain.

I have my regular winter smoker's cough even though I've never touched a cigarette. The CT scan last year showed scar tissue on my lungs. So after a positive PPD (tuberculosis screen) and nine months of antibiotics through the health dept. I am here again hacking up a lung. But no worries you can't catch it. Asthma? Can't breathe? That would also be our five year old every winter. We catch any virus out there and take it to the tenth degree.

Family gatherings from three different sides with conflicting schedules, styles and agendas seem to bring an added measure of drama. It's not fun for me to sit in a room full of people and know that half of them genuinely dislike us/me. I find myself wish my family of origin was not reckluse or conlficted. I miss the traditions we had as a child and I miss the real spirit of Christ I want to feel now in my own home. Mix that with children who get overstimulated in loud settings and it can be interesting. Last week when we went out for a birthday dinner and my oldest son had a meltdown and started hitting me which made my mom mad...you can imagine the rest I'm sure.

So today I find myself singing "Where are you Christmas? I can not find you." Any ideas for where to pick up some Christmas cheer? I'm off to pick up our z-pack, omnicef, ibuprofen, mucinex and all expense paid trip from the pharmaceutical rep at Target.