Mommy guilt or battling the many headed Hydra

"I wonder if my egg was too old?" I remember actually saying this several times and thinking it many. How could anyone not be just a little bit horrified to hear a mother say that. Oh, they were, I am sure of it.

Mommy guilt is a natural part of motherhood. I say motherhood because I don't think fathers bludgeon themselves to the extent that mothers do. Maybe I am wrong but it always seems fathers are just a bit more pragmatic about parenting.

I would describe it as tap dancing through a mine field. When you least expect it; Pow! I wonder if I breast fed long enough? Pow! Maybe I didn't sing to him enough as an infant? Pow! Is he getting enough; food, time, therapy? Pow! It's a no-win war with your own worst enemy and there is no winner in sight.

I think that if your child has special issues, you tend to beat yourself up even more. Maybe it's because it's really one of the only things you can do. Not being able to "make your kid ok" is the hardest, most vulnerable feeling in the world. Being out of control, not being in charge is excruciating for many of us. At least with mommy guilt, we apply the pressure ourselves even if it can be unfairly placed, anxiety provoking and many times irrational.

I feel guilty about Shea all the time. As I try to give voice to the worry it seems flimsy and unsubstantial. Yet, when I wake up in the middle of the night unable to sleep, the guilt is black, deep and amorphous as storm clouds. During the day, guilt is an annoying mosquito; never far from my ear yet easier to ignore as you go about the tasks and duties of life.

I am from the generation that felt like we could have it all. The first generation of girls who grew up with Woman's Lib as a done deal. We didn't have to burn our bras or do epic battle with the status quo but we saw our mothers, teachers, aunts and heroes do it. They did it so we didn't have to, right? Tail end of the boomers; we knew we could have careers, interests, lovers, a full rich life before we settled down to motherhood. Oh, and we did; those were the days my friend. We were the ones that put off babies until later and later in life. Look at me; Molly came when I was 34, Shea when I was 39. We didn't think anything about it. It wasn't odd; in fact it was considered modern, wise, the smart way to do it.

And, yes, there is some wisdom to this. Older parents tend to be more relaxed, financially and emotionally stable. But, there are down sides, of course. And, maybe this is where the guilt comes back into it.

There is something a little wacky about having children during the classic mid-life crisis years. What we we thinking? Or having them so near Menopause. Again, what were we thinking? Then there is just the physical demands. Parenthood is exhausting; even more so if you have some years under your belt. Yes, we are more emotionally stable but maybe we are too thoughtful at times, too circumspect after seeing all we have seen. Dare I say too controlling, set in our ways? Plus, there is the reality of time. I will probably be an old, old lady (if I am lucky enough to still be around) by the time Molly and Shea have children. I probably won't have the luxury of being the spry, springy Grandma like my mom.

So, unfortunately I don't have a silver bullet for this particular beast. I sure wish I did; I would make a fortune. What to do? Get some exercise so that sleep comes easier. Cultivate a small select garden of good girlfriends who will listen and bring you back down to earth. Listen to your husband when he says, "Don't worry, honey." Love your kids, try to be a little kinder to yourself and count your blessings.

Why we do it

I know it's been a little heavy so far so I thought I would lighten it up a bit with a reminder of why we do what we do.

So, let's take some time to focus on what is really important; the kids.

Shea is so sunny; easy going and naturally generous. He possesses the innate wonder of a curious of mind. He loves his family, his cats and the comfort of home. School pals, especially best buddy Gordon, have a very special place in his days. Athough his verbal challenges can be very frustrating for him, tantrums don't last very long and his happy nature comes back almost immediately making him a favorite with all who know him.

We love him as he is, hope for a bright and beautiful future and will do ANYTHING we need to do to get him there.

Good golly miss Molly!

First let me say, despite the teasing, bugging, and incessant pestering, she really is the best big sister Shea could ever want. She is viciously loyal and protective. She is his most ardent teacher and devoted playmate.

She has a sense of justice with an honesty barometer that makes us marvel. She still possesses a guilelessness that makes me afraid sometimes. But with her strong wit and sense of self, she tends to throw the plodders off balance. She enjoys a sharp yet empathic intellect that makes me wonder just how far she will go. As far as she wants to, is our hope. She is our first born and there will never be anyone like her.

Parents, as you all know, are never objective about their own. My truly hilarious cousin-in-law Mike said once, "Why are our kids so much more interesting than any one elses?" How true.

I have heard it takes multiple generations to raise a well rounded child. My kids are lucky. My mom has been poised to be a rock solid grandmother since before the egg split. She takes adoring grand mothering very seriously and has set a new high water mark for our family. Beloved Grampa John sets a new standard for grampas in our family as well and treasures each hug and smooch. He is appreciated for his humor, sense of fun and good graces. Bless you both.

All the above pictures are from our wonderful trip to visit John & Ruth in their super terrific Hawaii beach house last Feb. 08. Lucky us!

Bubble Lady

Sally gave me a name and a number for a Speech Pathologist/Therapist that she had worked with in the past. I think I had it for months; long enough to loose it once and had to ask for it again. It wasn't until Shea's 3rd birthday neared that I called Marian. I was nervous. I was opening a door on something that I didn't really want to acknowledge.

I remember we talked for quite a while on the phone that first day. I was surprised that she gave me so much of her time. She was very nice and informative; had a stellar resume and seemed a good fit. After I explained Shea's issues as best I could, she said, "Well, he does sound like a child that I would see." We arranged a time and the ball was in motion.

Here is just a quick aside; there are no Speech Therapists on my little island. We have 11,000 people, a rocking grocery store, good restaurants, a couple of bookstores and a movie theater but not one speech therapist. Going "off island" or "over town" was going to be a given. Ok, you do it for your kid.

When we started, Shea did not have any words. He grunted, squeaked, pointed, babbled and hollered. To begin, she did an evaluation or gave Shea more standardized tests. But, she said right at the beginning, "These tests don't really mean a thing. They are snapshots at a certain point in time. In fact, mostly they are garbage."

By the way, we actually do call her Bubble Lady because helping Shea to learn to blow bubbles was one of the first things they worked on. For Shea, just learning to blow a kazoo or a whistle was a big deal. It was months before he expressed his first real word, "up". It was born from a "working hard noise", like lifting something heavy, coming from deep down inside. UGHP! Is how I would spell it. This was indeed a break through for him.

I should probably share a little bit about what to expect if you go find a speech pathologist. First, they are in high demand. Many are not even taking new patients. Marian says that there are fewer and fewer people getting into the field because the insurance companies do not generally cover neurological therapies or only a small portion. I won't get going on the insurance issue, that is a whole post by itself. But, the long and the short of it is; we were lucky to find her.

Also, I need to be honest; it's pricey. Let's just say, I could get myself a facial, pedicure and a manicure plus a tip every week for about the same price. But, I don't question the worth, not at all. She has been integral in helping us navigate this stressful, scary time. She gives us real and legitimate advise on how to deal with school and the insurance company. She offers hope and encouraging anecdotes. She gently tugs us away from negativity and helps us look at the big picture. Frankly, we could not have gone this far without her.

Now when I look at Shea, I really see how far we have come. He now calls her Bubble Lady all by himself. It warms my heart each time I hear it. I know it warms hers too.

Thank you, Bubble Lady.

IEP or Individual Education Plan

I will admit right out of the gate that I HATE standardized testing. I have been a strong critic of "No Child Left Behind" from the beginning and not only because it is an unfunded mandate.

I believe that standardization forces teachers to teach to the test. It also forces kids to learn only what the test asks. I think it stunts creativity and alternative forms of learning for both teachers and students. And, I worry that kids that do not test well view themselves as dumb or unintelligent just because of a test score. I wish with all my heart we could go back to a more well rounded curriculum and that teachers were encouraged to bring their own creativity and interests to lesson plans instead of having their job performance linked to how well the kids pass a standardized test. Alas, I fear that the genie is out of the bottle on this.

So, what does this have to do with Shea? Well, when a child with special needs turns 3, the school district makes their formal assessment about need. A whole fleet of standardized tests are given which determine what services will be provided through the school district. They use these tests as a starting point to determine the IEP for the child. By the way, this entire round of testing happens again at age 6 as the child moves into Elementary School.

I admit I probably had a pretty bad attitude as I headed into this testing when Shea turned 3. First, all the testing is verbal. How do you do accurate standardized tests on a non verbal child? Good question but no easy answer. There was a lot of paperwork, checklists and questionnaires for the parents to fill out. The teachers and specialists were very supportive and wonderful, I just didn't have any idea what was coming or how I would react.

A meeting was scheduled to talk about all the testing and Shea's needs. I didn't really realize how hard it would be to sit and hear the results; the tests determined his language at 9 month old, that his IQ landed below average, etc. I remember pretty much crying through the whole thing; I just kept going through tissue after tissue.

My husband was home with Shea during that meeting and silly me, I went alone. Big mistake! DO NOT go alone to an IEP meeting, especially the first one! Everyone, no matter how tough, will need a support person that first time around.

I remember one of the specialists asking me what had happened that made me so upset. Not her words exactly but that was basically the gist. I said, "I guess, I had promised myself that I wouldn't freak out until Shea turned 3. Now, he is 3 and there is no way for me to deny it anymore." In a word, I was freaking out and the future seemed very dark and scary. They all just sort of sat there looking at me with compassionate, somewhat embarrassed looks on their faces.

It was true. I had tried to stay light, breezy and not over react. I set Shea turning 3 as a threshold for my full scale worry. Well, when it hit; it was fast and furious.

My husband was much more taciturn. He knew that Shea was intelligent and that he would be fine. Was he sad? Yes. Was he concerned? Yes. But, he wasn't a puddle like I was. It's nice to have a rock in the family and he is mine. Love you, honey. XOX

Looking back, I think it took a good month to just come out of that depression fog. I had good friends and support but I needed an expert. I realized that the school would never be able to give Shea the sort of intensive therapy that he would need. They just can't afford it. But, how does one go about choosing a therapist? Hopefully, you have a good friend that can refer you to one, and I want to send out a shout out and a blessing to Sally for helping us find ours.

Our family learns ASL

I had heard about a relatively new trend to teach babies and small children to sign. The theory being that you would get fewer tantrums and frustration as a child was learning to talk. I am sort of embarrassed to admit that I thought it was just for super high touch, woo-woo parents. I was skeptical and unsure how to even start learning myself let alone teach it to Shea.

Thankfully we were introduced to a truly brilliant series of DVDs call Signing Time.

www.signingtime.com/index.php/

We borrowed a couple just to check them out and we were hooked. Simple and very creatively put together; they are very engaging shows, 1/2 hour long with absolutely wonderful songs. The sister team that put them together did such a terrific job that the popularity has literally gone through the roof. They manage to demystify signing and make it very accessible to anyone.

For a holiday gift that year, my mom bought us the the first 6 DVDs and they became a staple that first year or so. My daughter (5 years older than Shea) loved them too. So, with that level of enthusiasm we launched into the world of signing.

It wasn't as hard as I thought it was going be and it was true, it did help with Shea's frustration level. It helped us all think in terms of sign and gesturing so that we could lay a foundation for Shea to be able to converse. And, the signs started coming right away.

He had been mainly pointing to show us what he wanted. But, with Signing Time it gave us access to the basic signs of living; more, food, drink, etc. Shea's vocabulary was building fast; milk, cheese, cookie, cat, dog, etc.

Shea's big sister took it upon herself to really encourage and reinforce the signs. This gave her a special teaching role and a very healthy way to interact with her little brother.

We invested in the next 6 DVDs and continue to rotate through them. We definitely have our favorites. All in all, I can't say enough about how positive the Signing Time series has been for us and would highly recommend them to any family.

Although Shea has now gone beyond just signing and is using words more and more, I am glad we have this foundation. We still sign letters often and it has really helped with Shea learning the alphabet and identifying letter sounds.

Child Find and Early Intervention

I really can’t say enough about how wonderful the Child Find Program was for Shea and our family. If there is any advice that I can share at the top it would be; if you have any concerns about your child’s development, search out the Child Find Program in your area.

What is Child Find?

“Child Find is a component of Individuals with Disabilities Education Act (IDEA) that requires states to identify, locate, and evaluate all children with disabilities, aged birth to 21, who are in need of early intervention or special education services.”

There is a lot of good information at:

http://www.childfindidea.org/

Under the umbrella of Child Find, Shea was welcomed into the Developmental Preschool program housed at our local elementary school. In the beginning, we were included in some play groups with other kids that had delays. I found networking with the teachers, specialists and other parents very helpful.

I remember this being a very sad time. I know, parents are not supposed to compare our kids to others but, honestly, it is very hard not to. I guess I was just beginning to realize that Shea was “different” and I yearned to understand what it all meant….NOW! I wanted someone to tell me what did this mean for my kid. Would he grow out of it? Would he just “get it” one day? What did I need to do as a parent to help?

More questions than answers surround times like these. And, even though the teachers and specialists were very supportive and kind, they would not even hazard a guess about prognosis. At the time, I found it very frustrating but later realized that they were in a very tough position. As soon as they predict one outcome and it doesn’t turn out that way, they are blamed. Later, as I was learning the maze that is Special Education in our public schools, I realized this was probably a necessary and perhaps legal directive and it was considered the safest way to deal with special kids and their very upset, nervous and feisty parents.

Again, I am so thankful we got referred to Child Find so early. I see it as the most important first step we make. All the pain, worry and insecurity was still there but at least we weren’t dealing with it alone anymore.

Apraxia

The first speech therapist that we saw brought up Apraxia as a possible diagnosis. Huh? What is that? I turned to the internet to find out.

"Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe."

More good information at:

http://www.nidcd.nih.gov/health/voice/apraxia.htm

I ran across another very good website focusing specifically about Apraxia with kids:

http://www.apraxia-kids.org/

I did a lot of reading and worrying, then more reading and more worrying. The diagnosis seemed to fit. When we modeled for him sounds or asked him to mimic, he would delay or just sort of stare at us. I kept thinking, "Can't he do it or won't he even try?" He seemed to be able to make sounds on his own terms but when asked to perform he pulled up short. Was it performance anxiety?

Later our wonderful private speech therapist that has been so supportive and helpful to Shea and our family, told me that Apraxia in children is a relatively new focus perhaps 10 or 15 years old or so. She talked about how Apraxia or Dispraxia was originally studied in stroke victims who had lost speech. The words are there in the brain but won't come out as speech.

Wow, I thought, how frustrating. If this is really the problem, how the heck am I going to help my kid?

Communication is crucial for human contact. How is my kid going to have a productive life without being able to talk? Those were dark days. But, we got to work and started signing.

Late talker

Shea came along when my oldest was 5 1/2. She wanted a little sister but a boy was ok too. I was on the cusp of turning 40 and had never imagined to have a newborn at that age but that is exactly what happened.

Looking back now, Shea seemed an easy baby; quiet, slept through the night early, good eater and easy going. He was our blue eyed, blond haired boy. Physically he was perfect, nothing unusual until the 18 month check up. Our doctor ran through the standard checklist and Shea's lack of words was flagged. It was true. He babbled but no words, in fact he didn't seem to mimic. Didn't seem to want to copy.

She referred me to the Child Find program through our local Elementary School.

Honestly, I didn't think there was anything wrong with him. There seemed like so much light behind his eyes, I felt that he was taking it all in but not talking about it. I just thought he was a "late talker" with all the comforting vagueness that term can muster. Everyone has heard stories about a child who didn't speak until he was 3, 4 or 5. Albert Einstein, in fact, did not speak until he was 5. There was so much anecdotal evidence that I felt like I shouldn't worry too much.

In the beginning....

This is my first blog entry...ever. So, lets see if I can figure this out.

What do I want to accomplish with this blog?

1. Tell Shea's story
2. Connect
3. Give hope
4. Not over think what I share; just share.

Thanks. Ok, here goes...