practicing growing up

As you know, Elise has Down Syndrome and Sensory Processing Disorder and ADHD.  This makes growing up a hair tricky.  Because she is delayed, I cannot simply tell her why she needs to do something, and warn her and then activate it.  She cannot comprehend it.  I also cannot just DO something for her developing body and expect her to accept it, because the SPD requires an adjustment period.  AND if I am successful enough to talk her into a change, her 2 year old heart wants to share the changes, and her ADHD mind thinks it's cool to show you, abruptly, with no warning.


Lately, I am attempting the placement of things that she will need in the future while it is not necessary, so when it is, it doesn't effectively ruin our days.

Implementation #1:  She is 10.  I fully anticipate that she will start physically developing before too long.  So I purchased 2 very soft, stretchy, shelf bra-lets.  Kind of a practice training bra, if you will.  She was VERY disinclined to try it on at first.  She wears it about 2-3 days a week right now.  She kinda likes it, it's smooth and doesn't bind, but she likes to ditch it, occasionally.  We've already added a day more than when we started.  I hope that by the time she needs it, she will be willing to wear it for the entire week. I am encouraged by this.

Implementation #2:  Ditto the physical development comment.  This has been somewhat rockier.  Deodorant. 

For someone who gags over wearing lotion, you can see why this is a little problem. 

I have gotten a vanilla scented one that does not make her ill.  She rather likes the smell, "yum!!".  She loved it, until she realized that is was for her armpits, and not snack.  I am still only at once a week right now.  But I, again, hope to add in the rest of the week by the time she smells like BO instead of hot puppy when she plays outside.

Implementation #3:  I have gotten some cloth pads.  I haven't done more than this, mostly because the whole situation nauseates me.  I have a low grade plan.  I will be taking her to a pediatric gynecologist (yeah, I didn't know they exist, either) this summer.  I hope to learn that she can take hormones or birth-control to prevent periods, except for once a quarter and keep her home during that time.  I cannot begin to fathom sending her to school until she gets some concept of the situation.  I would not wish that on my very worst enemies.  If I cannot do that, I will need to work it into her IEP  that she can stay home during that time of her cycle, until she has some education in the expectations and care of herself. 

Elise has already started the emotional roller coaster that is the hormonal monthly flux.  I admit that I am praying that she successfully even keels a bit more over the next couple of years...because the highs and lows are whiplash inducing.  Honestly, she started that last year.  But she has settled into a document-able routine. She has two weeks of plain awesome.  Then she has a week of bipolar highs and lows.  The final week is the week of emotional crashing.  Everything is bad and dreadful and not be be endured. 

While it is not easy, I do appreciate the cyclical-ness of the current status.  I don't appreciate being blind-sided by crazy.  But I can at least plan for it, right now.

sidenote:  I never understood even the idea of taking sterilization steps until lately...I see why it becomes an option for some situations.  I would never do this until it is clear that she wouldn't have the where-withal to make life choices on her own.  But I see the appeal.  (Interesting factoid:  A woman with Down Syndrome only has a 50% chance of having a child with DS.  I would have thought that because of the genes, it would have to be 100%.  Interesting, huh?)

The ADHD thing is still a work in progress.  It is NOT okay to make people smell your armpits or admire your bra.  I hope, again, that by the time it's an dramatic issue, that we have nailed that dead horse to the floor!!!

If there are readers of older young women out there, I would treasure any words of wisdom in these areas...and any more that I have not thought of.

31 for 21: #7 Top Ten IEP Tips: Guest Post

I decided to try and sweet talk my mother into doing a guest post during this series.  She is a school psychologist.  I wanted you know to know that it is NOT just me pumping you up for success when you go into an IEP, when I say you hold ALL THE CARDS.  You have legal ownership of your child's education!  And it is nationwide.  This is her schpeel when she presents Parental Rights.  Not every system is as empowering as she chose to be.  These particulars are Georgia Law, but the bare bones are in every single state.

Here is my mother, Sharon Tachenko.  She is a former Special Education Teacher, and current school psychologist and diagnostician.

"I have served as a school psychologist at many meetings with parents, classroom teachers and other intervention staff. Such meetings are called to review psychoeducational assessment to determine eligibility for specialized services. Meetings with parents and teachers can also be for the purpose of a review of prior eligibilities and consideration for ongoing specialized services (IEP for special education). ALWAYS, at either type meeting, an essential goal for me is to assure parental comfort, respect, and to draw YOU, the parent, into a true collaboration as an essential member of your child's educational team. The law under the Individuals with Disabilities Education Act (IDEA) REQUIRES that Parental Rights be administered. I never see this as a perfunctory act, but rather an opportunity to inform and educate YOU, the parent, with the goal in mind to draw you into a full and equally important role with teachers in the education of your child. Who better than a parent can best serve as reporter and ADVOCATE for your child!

 

I seek to empower parents in that knowledge. I say it explicitly. I always tell parents, "YOU are your child's best advocate until the students can advocate for themselves." An essential goal of any intervention team should be to make intentional plans to model and teach students as we pass that baton of self-advocacy. Parents should frequently be reminded of their essential Parental Rights. At each meeting, I always sought to provide a synopsis of those rights. After addressing the above principle of advocacy, I would seek to inform you that one of your essential rights is the right to call a meeting at any time. Each of the following Parental Rights are accorded by law through the Individuals with Disabilities Education Act:

 

You have access to all your child's records at any time. I suggest to parents that you keep papers (filed oldest to most recent), so that you can quickly locate and monitor what should be happening on behalf of your child. If you cannot put your hands on essential papers/records, you can request them and have full access to them (special ed department). People come frequently for a variety of such requests, and you should NEVER feel hesitant or intimidated to ask for anything in your child's special education records.

 

YOU have the right to call a meeting of teachers and intervention staff at any time. This can be to discuss concerns, lack of progress, ask for help in better augmenting/facilitating the home role in the school's stated goals.

 

You have a right to expect confidentiality. Nothing will EVER be shared beyond current education providers without your written permission.

 

You have the right to a full and complete evaluation to determine your child's disability and/or related service. Efficacy of prior testing MUST be reviewed every three years, with consideration for further testing on the table. You can request updated testing to be done by the school. You also have a right to contest an evaluation with an independent (outside of school) assessment. NO decision can/will be made regarding your child's services without your full and informed permission.

 

You have the right to have your child's services provided in the "least restrictive environment." That means that unless the school can show (with data) that your child cannot learn and make adequate progress in a setting with typical developing age-peers, no pull-out should be considered.

 

If you ever feel you are not being heard by your local service provider(s), you can request a due process hearing. This can result in a simple mediation and resolution at the local level. You also have the right to file a formal written complaint with the Georgia Department of Education to conduct an investigation about any concerns, problems or disagreements. These essential rights are provided in synoptic detail here:

http://www.parentmentors.org/Documents/Special%20Education%20Parents%20Rights%20condensed.pdf

 

And a more comprehensive, detailed version here: www.gadoe.org.

Both the synoptic version and the more detailed version should be provided all parents of children with special needs at the outset of the school year. They should also be offered at any and all meetings where your child's needs are discussed.

A final word to you ~ NEVER be intimated by the "professionals." No one knows your child, or CARES for your child like YOU, the parent. I always tell parents, "YOU hold all the rights! Take advantage of them! Fight for your child! NEVER remain silent when you think you have some insight or desire for your child. We are a team and YOU are an essential and critical member of that team. As much as a teacher may grow to love and respect your child, that teacher will touch your child's life for only one year or two. YOUR commitment will be forever." I take that very seriously. NEVER let any well-meaning "professional" keep you from expressing your wisdom and desires for your child. YOU are your child's best ~ and forever advocate!"

And so, you see that you have legal proof of your power and control.  It's not just me pumping you up and encouraging you.  Also, now you see why you can afford to be generous and participate in true and equal discussions.

What is Down Syndrome? for my 6 year old

As I have said before, Amelia and Charlotte are beginning to realize more and more that Elise is not like everybody else...  And on the evening of Sept. 10, her cancer-free anniversary, Amelia asked again, over cake.  And this time, I gave her a Longer, More Complicated Answer.  Because it is coming up more often, she is apparently craving more information...and it impressed my mother.  Now, I realize it's my mom, and my "brilliance" is always magnified more than it actually is...because it's my Mama...but the way I said it, made a visible impression, and she has gone back to it several times since...and so I decided to post it here, in case it really is brilliant.

"Why can't Elise talk or act like me?"

"Because Elise has Down Syndrome. It is something that confuses her body, so it takes her longer to learn things.  She can learn all the things you can, it just takes her longer."

"But what is Down Syndrome?"

"You have something called chromosomes that work together to make all your body parts and help your brain work.  Elise has an extra chromosome, and it confuses her whole body.  It's kind of like when EVERYBODY is talking really loud, all at the same time...and you slowly have to ask everybody to be quiet and and listen to each person, one at a time...which takes longer than if everybody took their turn talking...right?  Make sense?"

<<Amelia, nodding>>

"That's what her extra chromosome does to her body, it confuses her talking and her learning...and why she has a hard time zipping and buttoning, why she doesn't remember not to do dangerous things or act like an older girl, it's even why she is sick more often (it even confuses her inside body parts, so it can't fight being sick like you can)...It's because her extra chromosome is yelling at her and confusing her."

"Oh, okay."  <<returns to eating cake>>

So there you have it.  The bare bones version of Down Syndrome.

(And yes, I am absolutely aware that I used 'confuse' about 70 times too many, but, you have a limited vocabulary when explaining to a 6 year old.)

Dancin'

We spent the first 5 years of Elise's life praying that she would gain weight and get ON the stinkin' charts...and now, we are a little concerned about her activity level and snack intakes.  The doctors are not concerned yet.  They assure me that she is still in the healthy range, but she is certainly edging up to the top of the bracket.  She is still growing up and they aren't worried about her increase in weight.

I am not concerned for now.  I am concerned about the habits that are being formed.  I am pushing the high protein  snacks, getting away from the highly processed carbohydrates.  I am trying to get her into the habit of exercise now, so if and when she needs to, it will not be a foreign torture. 

This has been difficult.  She is not terribly coordinated.  She does not follow rules well enough to jump into typical peer sports.  She can run, and run she does in Target and down the halls at school...on the road in our neighborhood?  Not so much.  So I've been trying to figure out how to up the energy output.

Our golden fall-back, is actually a sensory discovery.  She LOVES the input that she gets bouncing on the trampoline.  She'll jump just like a crazy thing for quite a while.  So that's what we are doing here at home.  But she needs more...like the rest of us, one thing gets boring after a while. 

I've considered joining a pool, as a family, just for her...but they none of them are close by...

Today I stumbled on a surpise.  I turned waaay up the tunes on my phone while I was cooking...and Charlotte was lured in like a moth to a flame...and we commenced to jump around like crazy people.  And Elise was lured in by the crazy that was going down.  And she joined us in the jumping around like crazy people.  For 45 minutes.  No lie.  Really?  I've been worrying for 6 months?  And it's under my nose and FREE and IN MY HOUSE!?!?!?

Cool.

Tomorrow I have a date with iTunes.  I'll be uploading all of the songs that Elise particularly loves from all her movies...and Voila!!  We have a workout!!!! 

I'll let you know how it goes.... 

Thankful That We Are Not Alone : Shonda's Expectations

I am thrilled to have yet another new guest!  Shonda is another of my signpost friends.  Her son is 2 years older than Elise.  I appreciate her parenting advice and her special education experience.  She is a special needs teacher...the expert from both sides...  This is a sweet reflection on her son's birthday!  

What to Expect When You're Expecting…a Child with Down Syndrome

11 years ago today, I was holding a newborn Jack in my arms. Trying to nurse his weak body that unknown to us had a gaping heart defect which would require a major cardiac repair in just a few short months. The neonatologist had already entered the room to inform my husband and me that she was 99% sure our son had Down syndrome. JR and I were shocked and in denial. All of the physical markers they pointed out to us could be explained away in our minds, and we did just that to make ourselves feel better. The labs would be delayed for 10 days because of it being the week of Thanksgiving. Slant to the eyes? Emma had that, too. Gaps between toes? You should see my toes! Low muscle tone? Didn't seem that bad to me. Single crease across the palm of his hand? JR and 4 of his siblings have the same thing! I went through a range of emotions from anger to denial to shame. The only shame I have now is that I had shame then. 



When our 4 and 1/2 year old, Emma came to the hospital room to meet her baby brother for the first time she said, "Oh, Mommy! You had a Chinese baby!" I began to fear the doctors were right. One of my first thoughts was how having a child with Down syndrome would impact Emma for the rest of her life. I grieved the thought of her having to take care of a sibling after her parents had passed. Wow, when I see them today, I realize what an unfounded fear and grief this was. Emma is a better and more grounded young lady because Jack is her brother. We went on to have another child, Lou, who is 19 months younger than Jack. Emma and Lou argue about who will "get to" live with Jack someday if he requires that level of support. Dumb me.

When Jack went to Vanderbilt at four months of age for his cardiac repair, I prayed like I'd never prayed before. Part of me felt like I was saying goodbye to my little fella whom I now loved despite whatever might be wrong with him. I prayed this prayer repeatedly: "God, I don't care what he grows up to do or be. I don't care if he ever walks or talks. Just please let him live!" Jack lived. His heart is repaired and there are no other plans for future surgeries; he takes no heart related medicines, which is miraculous. 


I delved so deeply into the study of how to help Jack, how to improve his quality of life. Within a few months I knew everything a person could know about Down syndrome, but the road changed beneath our feet, again. At age 2 Jack began to show signs of Autism. By age 3 Jack was diagnosed with Autism. We jumped onto this new road and learned everything we could learn about Autism. 

As I reflect back on the last 11 years, I think of the many challenges we have faced with Jack, sure. But the joy of being his mommy far surpasses any of the times of trial. If anyone thinks I'm a Sally Sunshine, think again. I get it, I know Jack has challenges. I am not in denial about what those challenges might bring to his future, but every kid has challenges; Jack has different ones. 

I am often asked to call or stop by and talk with parents who have a prenatal and/or postnatal diagnosis of Down syndrome for their baby. I am often uncomfortable doing so. There are many reasons why, but I would sum up my discomfort with these words, 'I don't have the answers'. I don't know how a certain and particular child with Down syndrome will turn out any more than I know how a child without a chromosome anomaly will turn out. I can't predict the future! As I have known many baby boys, born perfectly, later to be diagnosed with autism, when I would have guessed, "hey, baby boy, looks great, perfect karyotype, all looks great," and I would have been wrong. The karyotype of chromosomes makes us think we can "box in" a child's future somehow, and nothing could be further from the truth.

To new parents of a child with Down syndrome I would say, you call me, I won't call you. If many folks try to call you predicting the future, beware. I am no soothsayer and I know that the range of abilities for a child with Down syndrome is as varied as that of a child without. I can tell you a few things of which I am sure: There will be a slight slant to the eyes; there will be a smaller nose (not a bad thing right?), there will be some speech issues. Those are the three things I have seen and observed in all children with Down syndrome. That's it. How can we guess what/how any of our children will turn out to be? What would one say about all boys? All girls? All blondes, all brunettes, all Caucasians or African Americans. It's no good to box in groups of folks, any folks. I have known folks with Down syndrome who are musicians, folks who drive, folks who live independently, folks who marry! On the flip side, I have known folks with Down syndrome (including my own son, Jack) with a dual diagnosis of autism; no expressive language, limited adaptive skills, etc. The thing is, I can say the exact same things about kids I know born without Down syndrome. Why do we do it?