Friday, October 31, 2008
So, do I let my kids eat all the candy they want? No. I monitor, and monitor closely. But, I do believe that sugar is a big part of the culture of American childhood and that a parent needs to walk a delicate line. And, all that is before we introduce the complication of food allergies.
So, here we are at Halloween. What will work for Shea? Thank goodness chocolate is ok. Peanuts aren't. So that nixes many, many, many personal favorites. Bye-bye Snickers, Baby Ruth, Peanut M&Ms. There is also a lot of wheat in candy too. Anything with any kind of cookie or wafer is out. Usually lollypops, Starbursts and fruit based candies are ok.
As we dig through the loot; I view myself as an editor. Unfortunately, when I edit it lands into Mommy's pile. So, much for my self monitoring.
I encourage my kids to sort the candy and then barter. Not only does this build good negotiating skills but you get a lot of entertainment before the candy is even unwrapped. True; the 10 year old usually gets the better end of the deal but Shea doesn't take it quietly. And, considering his speech delay, that it ok.
Usually after the first sugar frenzy, they both loose interest. They eat all their favorites and sort of forget about it. I throw the rest away.
Of course, after I eat anything I want.
Understandably, folks from all over the Seattle area descend on Queen Anne to trick or treat in the fancy neighborhood. Not sure if all houses are as generous and J & R's but the questions will be:
How many cases of candy bars this year?
Update: Lots of fun!
Thursday, October 30, 2008
How does it happen? Organically. So many adult relationships seem to be comprised of adjacency; kids around the same age, living nearby, commute or working together, hobbies and interests in common. Our lives are busy; it all has to make sense. GGFs are no different.
I remember I was freshly pregnant with Shea, just a couple of months, barely showing but feeling sick and excited. I decided I had to start walking and getting some exercise. One of the downsides of my beautiful little island that I am lucky enough to live on is I do a lot of driving. Long gone are those days of walking to the grocery store and to do neighborhood errands. That went away when we left the big city and came to our little rural oasis.
The long and the short; I was really getting out of shape. And, now I was pregnant at 39 to top it all off. That frightening reality got me out the door and I started walking in the morning after I dropped my daughter off at Kindergarten. I walked alone for a month or two; spontaneously ran into another mom here and there but didn't really have a walking buddy.
I remember I was hanging out waiting to pick up Molly and a woman said to me, "I see you out there walking. Good for you." I sincerely asked her if she would like to join me. As luck would have it, she was quitting her job to be around more for her Kindergartner who happened to be in Molly's class. We commented on the obvious adorableness on each others children and she took me up on that walk.
We walked every morning all through my pregnancy. And, you know, that exercise did help to get the old body back even after a C-section.
5 years later, we still walk almost everyday. But let me be clear; this is not just exercise. This is therapy. This is a bull session, coffee clatch, stitch and bitch all rolled into one. This is about girl time to kvetch, whine, ask advise, get pats on the back. This is sanity, pure and simple. I miss it physically and mentally when we don't walk. And, as our endurance has increased, we puff and moan less as we climb hills; an honest to goodness friendship has grown.
We were lucky, our politics and and interests coincided nicely. Of similar age, going though many of the same things; we filled the walks with stories and comparisons, sagas and tributes. I respected her mind, accomplishments and perspective. Let's just state it simply; it was a good fit and now I can't imagine her not part of my life.
Time goes on; even more quickly now. Our kindergartners are in 5th grade now, getting ready for middle-school (gulp). Yet we have no problem filling our walk time with plenty of new comment and conjecture. And, yes; we ask others to join us. We try to share this little piece of magic we have developed together.
So, hats of to the GGF! What would we do without them? If you are lacking, then cast about, she is out there; waiting for you to extend a hand. You never know who will become indispensable in your life.
Tuesday, October 28, 2008
This is one of the posts that I have been writing in my head for a very long time. It's a tough one to start. This is one of the those posts that Shea will be mad at me about in 10 years.
Potty training was one of my concerns I brought up when we took Shea to UW CHDD last spring. I was looking for any ideas, support, tips, direction on helping with this. Because, you see, Shea still has very little interest and he is 4 1/2. He isn't inspired by "big boy pants" and doesn't find sitting on the potty all that life affirming. He seems fine with mom or dad taking care of the mess, thank you very much.
Due to his language difficulties, he never really had a word for potty and has never expressed himself when potty was happening. Sure, he hunkers down when he is working on the business of poo but that is a "during" sort of thing. Probably too late at that point.
And, then the food allergy issue comes up again. Because we have been struggling with his allergies and food issues, he isn't necessarily very "regular". So, there is that difficulty too. Although, we have been known to bribe with M&Ms. At least he can eat chocolate.
All the specialists say, "Oh...boys...he isn't ready...don't push too hard." Good advise, so we don't but he sure seems happy to continue on as we are. Meanwhile, we are REALLY ready to let it go.
CHDD did hook us up with some direction the TEACH method for potty training used for autistic children. Even though, nobody seems to think Shea is autistic because of his non-verbal language issues, they suggested this method as a good one to try. It breaks down the process into many little steps where direction, support and reward can happen at each step.
The Developmental Preschool is helping and we have included potty training in Shea's IEP. I didn't even realize we could do that but Bubble lady suggested it. She said she has had several kids include it in their IEP therefore the school must work on it with the child. Although, Shea's at school only a few hours a week, it did make us feel more supported and that we weren't all on our own on this one. Although, we are still have a long way to go.
So, I wish I had more supportive suggestions but I don't. In fact, I hope someone has suggestions for me.
Sunday, October 26, 2008
I don't think it will surprise anyone that I am a very committed, super excited Obama supporter. I love my country and I want it back.
This is a historic election; go out and Vote!
I just have to share a couple of things I have stumbled across on the internet;
Rosa sat, so Martin could walk…
Martin walked, so Obama could run…
Obama is running, so our children can FLY!
This is powerful stuff folks!
Saturday, October 25, 2008
Friday, October 24, 2008
First the teacher did a little bit of marveling at how much more focused, social and talkative Shea is this year. It's true; he is really getting to be a big boy and now knows what is really expected of him at school. But, again, the changes since we started the gluten, egg, soy free diet have been profound.
She did say that his fine motor skills are still lagging and would like to have the school Occupational Therapist run the Peabody test again which measures development motor skills.
He is 4 1/2 and although he knows how to spell his name he can't or won't write it. If we help, he will do it. If we make dot, dot, dot letters, he will trace over them himself. He is also having a hard time cutting out shapes with scissors.
He was given the Peabody when he was 3 and being evaluated for his IEP. He just missed getting OT services by a very small amount. If they retest now, he may be able to qualify for OT services at school.
Even though Shea sees his private OT every week, so much of being a special needs parent is fighting for more services for your kid. Whether your fighting the school district to get services or fighting the insurance company to cover services, "special" parents learn to fight pretty darn quick.
In fact, one excellent example of the passion, focus and energy of "special" parents is the film documentary, Beautiful Son. Parent filmmakers tell the story of their son Beau who is diagnosed on the Autistic spectrum. A very touching and indeed a beautiful film, I caught on my local PBS station. Check out the website for a trailer and more information.
Warning: hanky alert!
Does anyone remember going to camp in 5th grade? I don't; but, we lived on the Hood Canal at the time, just the sort of place that city kids would come for camp. So, maybe they didn't think we needed it. Also, that was back in the 70's and those were tough economic times for everyone. Maybe no one could afford it back then.
Now, it's all the rage to ship your 5th graders off with their class to a wilderness camp for the week. Molly leaves on Monday morning.
It goes without saying how I love my daughter; she is the sparkly, bubbly, super fabulous Molly. There is nobody like her and I adore her immensely. But, wow, she can be a colossal pain in the keester. She has a special innate skill of tormenting Shea in the most amazing way. Fine talents that only big sisters possess. But, she is the brightest star in his universe, the most exciting game in his playbook; his beloved Yaya.
What am I going to do for 5 days and 4 nights? What is Shea going to do?
Here's to wilderness camp, baby. May you learn all sorts of stuff about how to make new friends and get along with all kinds of people. May you actually enjoy the ho-down where you are made to square dance with boys. I hope you like the food, schedule, cabin mates and the science curriculum; and I can't wait to hear all about it. Dress warm because I won't be there to bug you about it.
I guess it's time to let go, just a little bit.
Wednesday, October 22, 2008
Boil up 1 -1 1/2 organic spuds per person depending on how much you LOVE them. Leave the skins on; remember that is where the real nutrition is. Boil until soft.
Drain liquid but reserve about a cup for mashing.
Add several big dollops of butter straight onto the hot spuds. Add splash of Rice or Hemp milk and start mashing. For years, I would mash potatoes with a fork which is quite a work out and then I finally graduated to a real masher. Fast, efficient; the right tool for the job. I wouldn't live without one now.
Continue to mash, add a splash of potato liquid. Add splash of chicken or veggie stock, if available. I get those little 6 oz. containers just for this purpose. Keep mashing and adding liquid until it is the texture and smoothness that you desire. Salt & Pepper to taste.
I dish out with an ice cream scoop so that our mashed spuds are perfectly proportioned mounds. Maybe it reminds me of school lunch from when I was young but if feels right somehow and the kids get a kick out of it.
Yum, yum. Have another scoop. It's good for you!
Hemp Milk is a terrific milk alternative; a balanced source of Omega 3 & 6, comes is 3 flavors (Chocolate, Vanilla, Original) and packs a real nutritional punch. I really sat up and took notice when I realized that it had 4x times the protein as Rice Milk.
But, careful! The extra fiber and all the Omegas can make Shea's #2 a little, shall we say, loose. Great if constipation is an issue. We cut the Chocolate with a little Rice Milk for a morning hot chocolate.
What's in a Glass?
Hemp Nut Base (Filtered water, Whole Hemp Nut [Shelled Hemp Seed]), Brown Rice Syrup, Cocoa (Processed with Alkali), Natural Flavors, Disodium Phosphate, Xanthan Gum, Calcium Phosphate, Vitamin A Palmitate, Vitamin D2, Riboflavin, Vitamin B12.
Serving Size: 1 cup (240 ml)
Servings Per Container: About 4
Amount Per Serving
Calories 210 Calories from Fat 45
%Daily Value* Total Fat 5g 8% Saturated Fat 0.5g 3% Trans Fat 0g
Cholesterol 0mg 0% Sodium 145mg 6% Total Carbohydrates 36g 12% Dietary Fiber <> 1% Sugars 24g
Protein 4g Magnesium
20% Potassium 4% Zinc
8% Vitamin A 10% Vitamin C 0% Calcium 40% Iron 10% Thiamin 8% Niacin 6% Vitamin D 20% Vitamin E 15% Vitamin B12 20% Phosphorus 40% Riboflavin 25% Folic Acid 4% *Percentage Daily Values based on a 2,000 calorie diet.
Monday, October 20, 2008
Since both Jake and I are self employed, we purchase our insurance on the open market. So far we're lucky; we have been able to afford it. Because we are relatively young (44, & 49), our policy ONLY costs us about $750 a month. Lord help us if we had any pre-existing conditions or it would be much more or they would refuse to cover us at all.
We never really needed our insurance until Shea's speech issues came along. With private therapy, quite literally costing us a small fortune a year, I was going to do my darnedest to make sure the insurance company covered what they promised which, quite honestly, wasn't much. For those of you who don't know, insurance coverage is notoriously whispy when it comes to Neuro-therapies. My policy will cover $2000 a year total with a specialist "within their network" or $1000 a year total for a specialist "outside" their network. This is for a specialist who costs between $75 - $125 an hour. You do the math. Their coverage ends up being a small fraction of the real out of pocket costs. But, to even get that fair, you must capture the elusive pre-authorization. I have found it comparable to the search for the holy grail.
My attempts to get the pre-authorization for Shea's Speech Therapy were excruciating. I sent in 3 separate batches of records; background, evaluations, etc. I called and spoke with amazingly unwilling or uninformed customer service people who gave me different addresses and strange fax numbers. They said they never got any of my paperwork.
Bubble lady sent complete paperwork packets twice as well. They insisted they never got them or said we were not covered. I trotted around this track for about a year. At a certain point, I remember just hanging up on the minion that was trying to cheat me and just cried, totally spent. It seemed particularly cruel to prey on the most vulnerable patients in need and take advantage of the weakest, most stressed out parents.
So, what do you do if you are in this vicious cycle? Don't give up; that is exactly what they want you to do. They want you to keep on paying your premiums but to just give up trying to get them to honor the policy because it is literally too much work. Oh, and it is. I have never felt more fruitless and obsolete than when I was battling the insurance company.
Solution? Go over their heads to the State Insurance Commissioners office. Simple; call them on their fraud and bad dealings and go to the state regulator. Most states have websites that instruct you how to start a case. Document, document, document; write a heartfelt letter explaining your situation (be civil, professional and do not drag on too long), include all pertinent policy numbers, addresses and phone numbers of the insurance company, doctor's referrals and evaluations, a detailed timeline is helpful as well as appropriate verbiage from your policy that backs up your claim. MAKE COPIES OF EVERYTHING BEFORE YOU MAIL IT!
Once it's in the mail; relax, calm down, hug your kid, kiss you partner, twiddle your thumbs but don't hold your breath because after all this is the state government. They will respond eventually but you need to be patient.
I was assigned a case worker with an actual name and a phone number who I could call and talk to. He sent off very official, sternly worded correspondence to the insurance company and as if by magic the mountain began to move. Don't start celebrating yet because it took two more rounds with my case worker for them to actually issue a pre-authorization number, start accepting claims and reimbursing me. I was persistent. In fact, by that time, I was ferocious, I wasn't crying anymore, I was pissed. Being pissed helps a lot; crying and asking for help doesn't.
I like to think that I beat them at their game but I probably just got shuffled into a "pain in the ass" stack. Whatever; it felt good. But, the celebration is short lived and the saga isn't over; my policy will only cover this small fraction of Shea's therapy costs until he is 6. And, get this....I have to re-apply for the authorization each year until then, after which, of course, they won't help at all anymore.
You see, it doesn't really matter that he will need speech therapy until he is probably 10, 11 or longer, they have determined how long they will help my son.
That, my friends, is what a FOR PROFIT healthcare system buys you.
Sunday, October 19, 2008
On Fridays, when we go to the city for speech, I usually pop in to say hi, let her know of anything that has happened over the week and let them work together without me there. For the first year or so, I stayed in the room and observed. And, I did learn a lot but I felt I was distracting them both. I find that he is a bit more oppositional when I am there. And, frankly, it just makes me a nervous wreck to sit there and watch the battle of wills. I feel it is better for everyone if I go and hang outside for the hour, run errands, listen to the radio, etc.
So, I did not know that she had deemed the time appropriate to run those tests again. But, when I came to pick him up after the session, she was visibly excited. She had ran the cognitive portion of the test and he had landed at 53% or pretty much smack dab in the middle. Or as I like to think of it, age appropriate.
What a relief. We had always intuitively known that he had his wits about him. But, somehow the quantified number gave me waves of relief and hope.
Bubble lady also ran another test to find out where his language was compared to typically developing kids. The results came back with his expressive language at 3 years and 3 months. Or about a year a half behind. This didn't sound too bad to me and it seemed like proof that serious progress has been made.
So, here is a perfect example of the dichotomies of life; on one hand I don't trust those standardized tests one bit. On the other hand, these test just gave me concrete results that I could cling to as we ride this wave.
I guess that is why open minds glean more benefits?
Amazingly well, actually. Right away we started seeing real differences. First, his complexion and pallor normalized, skin tone now has a nice pink healthy color. Then we noticed he was able to pay attention and focus like he had never been able to before. Concentration was better and for much longer durations. He was attempting to say things that he wouldn't even try just a few days earlier. He was trying to say everything, any word we asked him to say. This was very new and different. Literally, we saw a difference in just a couple days. By the time we made it to the 3 week mark where all the allergens are supposed to be out of the system, we were sold. No going back. We saw amazing results right away, his teachers and specialists noticed too. This wasn't just us parents wishful thinking.
So, now we just needed to gather and expand the food options. Remember Shea has always been a super picky eater. So, finding foods that he could eat, that we could make was a big challenge. Seriously, at the beginning with all his "taboo foods" we were wondering what he could eat; potatoes, corn, oats, rice were all safe.
To start, we promptly changed to Rice Dream milk. No problem; Shea didn't even seem to notice any difference. I even found that they sell the the original flavor at Costco by the case. Easy to cook with, tastes good, affordable; basically that was a home run right out of the gate.
We have tried the Rice Cream (ice cream alternative) with less happy results. My daughter says it has a weird after taste, Shea is pretty luke warm about it. And, that is never good when dealing with ice cream. But, we found a Rice Dream Vanilla bar dipped in chocolate. Those get a big, sticky thumbs up from the little man.
Cliff Bar makes a kids energy bar called Z Bar which Shea loves. He could eat 10 a day if I let him. They are gluten free, 3 g. fiber and 3 g. protein and have all sorts of vitamins and minerals in them. These are a no-brainer for school snack times and easy access, on the go snacks. We go through a lot of them so I found a place I can buy them by the case for a lot less money, even with shipping included (Gotbody.com)
We discovered a great little company here in the Northwest, Wow Baking Company. They make a wide selection of cookies and brownies all wheat and gluten-free. You can find them individually at grocery stores or purchase by the dozen through their website. I also just found out that they will be selling cookie dough so you can bake them at home. Now, that will make holiday cookie time a little funner for Shea.
I am finding and trying new products all the time and will continue to share the good, the bad and the ugly.
Saturday, October 18, 2008
Wikipedia says, "is a neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste) the sense of movement (vestibular system), and/or the positional sense (proprioception).
I thought I knew what Bubble lady was talking about. I had noticed that Shea leads with his head; meaning he would whip his head around, bump up against you with his head, lay his head on you and push.
I had also recently noticed that he would get overexcited in group situations and "melt down". He didn't seem to have the coping skills or the language to be able to deal with the excitement and craziness of being surrounded by lots of kids like for example; a playground.
A friend referred me to an on-island Occupational Therapist.
What is Occupational Therapy? Good question. Wiki comes in handy again, "use of productive or creative activity in the treatment or rehabilitation of physically, cognitively, or emotionally disabled people". That sounds about right but it just looks like they are having lots of fun to me.
Enter Bouncy lady or Laurie's playground into our lives. Shea really digs this. Laurie has a big platform swing with ropes to hang onto. She has big jumpoleen's full of therapy balls to jump in. She has big suspension climby slings with different tensions to scramble into. She has a hammock with a big cozy pillow in it. There are tubes to climb through and balls to throw. The place is an absolute wonderland in less than 400 sq. ft. Shea would live there if he could.
She also brings many years of experience working with folks of all ages with all sorts of issues. She seems to have a multi-discipline approach, is always bringing up her observations and suggestions and is really the sort of expert I truly value working with Shea.
We really thought he needed this sort of action and interaction during the winter months when outdoor play is limited. And, we were right. He really loves it. Lauri went away for the summer and we missed her greatly but we jumped right back on the bandwagon this fall. It has become a a key component of Shea's therapy.
Thank you Bouncy lady!
That is what I would like to do with this series; share stories of truly exceptional, special people. So, here is the question to you; Is there room in this big, beautiful world for everyone and their own special gift? I sure hope so.
Jake said this film was the most powerful thing he has ever seen. What do you think?
Actually, I didn't think much of it because Jake is too, sort of. I mean, Shea always had his little food quirks. For example, he doesn't like fruit. Weird, I know, what kid doesn't like fruit? He will ONLY eat apple sauce. But, you know how it is, you get used to it. You conform to your kid's tastes.
After I went through the whole UW CHDD experience, the Pediatrician had suggested a Nutritional evaluation in the final report. Good idea, why hadn't I thought of that? I had been concerned about his pallor. He seemed pale; seemed to consistently have a wan complexion. Sometimes he would get these bright red "apple" cheeks and I had wondered if it was due to food allergies.
So, I took Shea to an on island Naturapath that I knew and liked. I gave her the history; told her about the recent diagnosis, our visits to both Children's and UW CHDD and gave her Shea's vaccination records.
I haven't brought up vaccinations before now but both my kids had the full schedule starting as early as 4 months. I thought about it but I trusted my doctor and felt that the risks of not vaccinating far outweighed the risks of getting the shots. Since then I have met and heard of many stories of children regressing back after vaccinations but honestly I never noticed anything like that with Shea.
But, like the Naturapath said, "How would you really know when they start at 4 months?" True.
We got direction on how to do a 5 day food diary and talked about an allergy test. It was easy enough to do; pin prick on his finger, blood samples on little strips mailed off to a lab, we would hear results in 2 weeks. While I was there, I asked about heavy metals testing. Nothing really worried me except our polluted arsenic soil here on this island. Oy! Come to find out, a heavy metals test is even easier to get; just a little hair sample. So, she took that too, just in case nothing showed up with the food allergies.
Then I waited. Actually I was expecting to hear something. Perhaps Shea was allergic to dairy. I mean I figured there was something going on but nothing prepared me for what I finally did find out.
I like to say that Shea got the Allergy triple crown. He showed strong allergic reaction to wheat, gluten, barley, soy, rye, eggs, dairy (whey) and peanuts. I sort of sat there in shock.
"You have got to be kidding?" I mumbled, barely coherent. Poor Kelly, what could she say? I just remember her nodding sympathetically and steering me toward a good cook book.
Cook!!?? Me!!?? My kids don't eat what I cook. Oh, they eat my Annie's cheesy noodles but that is not really cooking. And, NOW even those were verboten! What the heck was I going to do?
That's when I hit the internet and found The Gluten Free Girl. A Northwest girl who had literally been through hell before she realized she had celiac desease. Her book is a real good read. It tells her absolutely harrowing tale, has some wonderful recipes and includes a generous helping of optimism. True, she is married to a chef which has got to help but her book was just what I needed at a pretty crucial time.
I started to recover from the shock. This was not the end of the world; this was just another bump on the road. Hope is always just around the corner, if you just look for it. I picked myself up and started again.
Friday, October 17, 2008
This is the You Tube version but feel free to clink on "Animal School" in this post and it will take you to the high quality original at the Raising Small Souls website.
Quiz after the movie:
1. How many hankies?
2. What animal were you when you were in school?
3. Do you recognize your kids in the animal school?
Place your answers in the comments. : - )
Tuesday, October 14, 2008
The CHDD scheduled two consecutive weeks, 9:00 to early mid-afternoon to cover all the testing and evaluations. The first week we would be meeting with the Pediatrician and a psychologist (more standardized testing). The second week was Occupational Therapy and Speech Pathology.
First, let me talk logistics. When you live on an island, you are literally at the mercy of the ferries and peak traffic. To assure being in the University district at 9:00, I would have had to be in that ferry line very early. Luckily my mom lives on Queen Anne, we just decided to crash there for the night and drive across town in the morning. In theory it worked fine but, of course, I got very little sleep being away from home in a different bed and worrying all night. So, by the time I rolled into the CHDD the next morning, I had a pretty crappy attitude and was ready to do battle with the folks that blew me and my boy off for a year an a half.
We started out with the Pediatrician who did a very thorough evaluation. Nothing unusual came up. Although, he did suggest a formal hearing test which they were able to sneak in that day right after his evaluation. That test confirmed what we had already known; Shea hears fine.
Next stop was the Psychologist who observed Shea play and administered tests while I filled out a pile of questionnaires. I felt Shea was not able to really perform well due to being hungry and tired. Why they didn't schedule time for a break and/or lunch for a toddler, I have no idea. We got through what they could but I asked them if we could do the rest first thing at the next session. We finally got out of there at about 2:00. Whew...long day. Shea was a champ. I was exhausted.
The next week went a little smoother since I knew what to expect and slept better in Mom's guest room. We got the cognitive testing done first thing while Shea was fresh and perky. And, he did test much better than the previous week.
Next stop was the Occupational Therapy and while Shea jumped and play with balls, a social worker was there to talk to me. Maybe I had been flagged as a troublesome parent or maybe it was standard operating procedure but she was a very sweet, elderly lady who obviously had been working in the field for a very long time. She gave me a lot of good advise about how to deal with the school district, insurance company and how to handle the IEP meetings, etc. She was very compassionate and did a lot of listening and I was able to get a lot off my chest. She did agree with the consensus that Shea was not autistic. And, she encouraged me to include him in more group activities with typically developing peers.
The last meeting was with the Speech Pathologist. Incidentally, she happened to be a friend and colleague of Bubble lady. She was very assertive and pretty demanding of Shea. And, here is where she dropped the mini-bombshell. She didn't think Shea had Apraxia but very low tone in his lower face and mouth. This sort of took us away from a Neurological disorder and back to a physiological issue. Sigh...
She strongly suggested the PROMPT method in his treatment and demonstrated how using her hands to touch Shea's mouth can help him form sounds. He fought and resisted her but it did really seemed to work.
Come to find out PROMPT certification is a long and arduous process and that there are very few Speech Therapists who have it. I did some looking around, thinking I would add it to Shea's specialist mix but it wasn't happening. Bubble lady has more than a little bit of experience with PROMPT during her 30 plus years in the biz. That and her good solid relationship with Shea helped us decide that consistency and comfort zone was key.
I remember asking the Speech Therapist at CHDD if Shea's issue was something that he would grow out of or he would just "catch up" eventually. She said, "Not without help."
As parents you never really know if you are doing the right thing. How can you? It is only through hindsight that you can determine if you took the right path. So, until we get there, we just continue to muddle through.
So, what did we really get out of all that? Good question. I suppose a little peace of mind, some good suggestions, some compassion. Maybe the most important thing I got was; there is no doctor that is going to "cure" my kid. The "cure", if there is one, is the journey and the only one who has the capability is us, his family.
We didn't know much about it at first and were only given a phone number by the teacher. I left a message, waited, left another message and waited. Nothing. I waited a couple of months and tried again. Nothing. All in all, and I am not exaggerating, I had to have left more than 15 or 20 messages. Each one getting a little more concerned, frustrated and exasperated.
Maybe I have a bad number? That is when I started doing some thorough checking of the CHDD website trying to find an alternative number or some way to access a scheduling person. Nope. I had the right number. And, it did seem to be a real, legitimate facility that has access to all the experts to do a full screen for Shea. As more time passed with no response, I began to wonder; Was there so many kids needing Neurological screenings that they can't get back to us all? Did they not want to see him until he was older? Why weren't they calling me back? Even just to tell me there was a year waiting list and to hang in there?
The irony was sharp. Of all the parents who need some help, compassion and the luxury of not being blown off, it's parents with special needs kids.
I hit the wall; I begged my GP to find someone at Children's Hospital that we could go see. UW was non-responsive and I wasn't going to wait around for those jack-asses to pull it together. By the way, they actually did finally call me 18 months after my first call. They had no excuse, gave a minor apology and some lame CYA story about that scheduling person is no longer with us. Whatever. We did go through with the screening and I will cover that in Part 2.
We got appointments with a Speech Pathologist and a Geneticist at Children's Hospital when Shea was about 3 1/2. They sent us to the Cranial Facial clinic which is where they do all the amazing reconstructive surgery for cleft pallet kids. There was some initial concern that Shea's problem was physiological so we started there.
Jake and I together took Shea and spent a good chunk of the day. And, let me say, if there is a more wonderful, super kid friendly hospital in the world, I would genuinely be surprised. They made the experience very easy and not in the lease awful for all of us. I was so grateful to have some more expert eyes on him that I felt like weeping. But, I did keep it together pretty much.
The Geneticist came in and wanted to check for chromosome abnormality, so we would have to get a blood draw and wait 2 weeks for results. I remember the nurse was this huge, gentle giant of a black guy who took blood from Shea so quickly that he didn't really know what hit him.
Our meeting with the Speech Pathologist seemed to confirm the previous Apraxia diagnosis which I describe as a Neurological disconnect in the language center of the brain.
She did not see evidence of Autism which also had been brought up and reaffirmed by Bubble Lady. But, I wanted more. I asked for prognosis, "What happens to these kids? Do they ever speak? Will he have a life? What do you think, honestly."
She said, "Oh yes, the brain re-maps and creates new pathways. The brain learns to compensate for something that is difficult and finds other ways around it. Like when they are in college and they stay up all night studying, they may have difficulty finding certain words or running their thoughts together."
Holy cow! College!? I have been wondering if my kid was going to be mainstreamed in school! Wondering if I would ever hear "I love you" come out of his mouth! Wondering if he will ever be considered somewhat "normal" with friends and activities. And, she had him in college!
I don't know if she knew how happy she made me when she said that. I suppose I kept my cool but it was the stand out piece of info that came from that meeting. And, for a long while I clung to that thought, repeating it to all who knew me or dared to ask. Closing my eyes I began to see my little boy growing up to be a man who gets a little word jumbled when he is tired.
It seemed like a gift.