Into the Unknown...

.. well, not exactly the unknown, but it has been nearly a year since we have been camping with Jake and we've never gone with Manny. Jake was 7 weeks old the first time we ventured out with the camper, and went camping constantly during the first two years of his life.

Tomorrow we leave for the Boxcar Pinion Memorial Bluegrass Festival. We went last year and everyone had a blast. I am nervous about going this year, simply because Jake has fallen into a bedtime,eating and naptime schedule that he likes. Every time I am interviewed about Jake, I am asked if he freaks out if his schedule is changed. Well.. its hard to know, since we are just a scheduley family, and we haven't really traveled since I was pregnant with Manny. We will have a little 13 foot camper and we will also set up a giant tent complete with foam flooring, a mattress, TV and lots of toys, a safe place for Jake to play and wind down away from the fray. I'm positive that he will enjoy the music and the crowd, but I'm just as sure that he'll need to escape as well. Wish us luck!

Although I have described Jake before as exhibiting "aggressive" behaviour, I've noticed lately that that isn't exactly an accurate description. When Jake wants to play with another child, he will often stand very close to them smiling. When they ignore him or engage him or pretty much no matter what they do, he will often push them or hit them. He then giggles at their reaction, whether they cry or push back, and is usually overjoyed if they push him down or hit him hard. With adults, he loves to hug on his own terms, but doesn't really enjoy having in-and-out-again family members grab hin and hug him without permission (who would?). It seems almost pointless to try to teach his less-involved grandparents that they shouldn't grab him and hug him when he isn't receptive. You would think that teaching a child that it is OK to not accept unwanted touch would be important to caregivers (sigh), especially a child with limited verbal skills (but I digress). When he does hug, he likes to grab, pinch, hang, and otherwise make his affections almost painful for the receiver. Modeling "soft touch" or trying to teach him "gentle" has been a long journey that has yielded only mixed results. He has gotten better with other children.

Most importantly, Jake does not have a mean bone in his body. He is terribly upset when his actions cause his little brother to cry. Never have I seen him push or strike another child in anger or in retaliation to them taking a toy away, etc. He only seems to do these things because he doesn't know how to get a reaction otherwise. Jake is one of the most loving, sweet, and compassionate children I have ever known. He loves the people that he knows well: Mom, Dad, Mamaw, Papaw, "Uncle Larry" and a choice few others, and wants and needs very much to interact with children his own age. Hopefully we can facilitate that desire.

Be back with an update on the festival!

Talk to me!

Jake's speech consists of mostly echolalia and lately a bit of sign language. He's always loved TV, and I never really limited it, because he never seemed to mind if I turned it off and initiated other activities. Lately I've begun to hate the television, because I hear it even when its off, through Jake. During our interview at the Team Centers Jake accidentally opened a "snake in a can" and got startled. He ran behind me shouting "no no NOOOO!" and then, when the therapist tried to show him that the toy was nothing to be feared, he stood behind my chair yelling "MAX!" at her. I gave her the long version of the translation (I think she might be used to it) and told her that yelling "MAX" was Jake's way of scolding someone. It comes from a cartoon "Max and Ruby" where Ruby often scolds her little brother Max. If Jake wants to tell you "no! don't do that" He yells "MAX!"

I have been working with Jake on saying "I want ___" He can say the noun that he wants like "Juice! Juice" or he will sometime stand in front of the fridge saying "Want. Want. Want." but rarely can he put the things together. On one particularly verbal day he wanted a "vitamin" which is actually a probiotic supplement which he sometimes calls "tylenol." The resulting sentence came out: "Want want want. Jake, tell me what you want. I want. Want want... birdhouse, no its a birdfeeder.. Tylenol vitamin." In Jakeese that is "I want a vitamin. It can be frustrating and I find myself translating a lot. Also, one of his favorite phrases to say is "Ice cream cone truck." When traveling to the Team Centers Jake yelled "Ice cream cone truck!" in glee as we went through a tunnel. On the way back he yelled "Tunnel! Tunnel!" So you can see that his echolalia is intermittent.

Consistent phrases that include too many words are:

Daddy = "Daddy's Home"
Birdhouse(or birdfeeder) = "Birdhouse no its a birdfeeder"
Mail truck = "Ice cream cone truck, no its the mail truck"
Manny = "Baby Brother kiss"
Mommy = "Mommy I saw you"
Hermit Crabs = "Its a spider, OH! sea turtle, no baby crabs"

Jake can also repeat quite a bit of Dr. Seuss, recite the alphabet, and count to 20. He actually has quite a bit of appropriate language, but the echoing and scripting can be worrisome.

Recently I found a copy of Baby Signing Time that he wasn't interested in as a baby and put it in. He was enthralled. Since then we've purchased 2 more volumes of Signing Time and he is absorbing it like crazy. He uses a combination of sign and speech to create appropriate sentences. While he still only rarely or never says "I want banana," He may say "I want..." then sign banana. I have never EVER been able to get him to say "I'm sorry" (unless you count "Opps SORRY!" echoed from Diego). But while fussing at him for tearing up some flowers I had planted I said "tell Mommy that you're sorry" while I manipulated his hands to sign "Sorry".. he looked me right in the eyes and said "Mommy, I sowwy." I could have hugged him until his eyes popped out.

I guess part of the reason that his speech hasn't become as apparent to us is because he seemed to develop normal speech while in the "labeling" stage of toddlerhood. He still loves labeling and is consistent in labeling hundreds of objects, numbers up to around 20 and all of his ABCs. But somewhere at the point where he was supposed to develop phrases, something seemed to misfire. Although he has hundreds of words and phrases, can speak very clearly and be understood by most anyone, his robot-like language is odd and may or may not be appropriate to the situation.

Returning to the T.V. subject... I have become so disgusted with hearing TV show phrases repeated that I've waged war on television. Jake can watch Signing time at naptime and bedtime to wind down, and we usually end up watching Jungle Book about once per day. Jake love Jungle Book, but it seems to be too long and complicated and non-repetitive for him to echo. The rest of the time we listen to classical music or bluegrass music or Phish, or Zappa, or anything else. I have 3000 CDs worth of live music, and if he's going to repeat, it might as well be Doc Watson he's repeating. I suppose I saw no harm in television in the past, but I've started hating it. My life used to be filled with music, and it is again. Thankfully, Jake loves to dance.

The only questions that Jake will answer are labeling questions like What's this? or What's that. Asking a complex question like "What did you do today." "How do you feel?" or "What is that in your hand?" will cause him to zone out and appear deaf, sometimes for a minute or more.

I'll end this with a wishlist of things I can't wait to hear Jake say:
"My name is Jake." (He will label himself in pictures or the mirror "That's Jake")
"I'm three/four/five (years old)."
"I am happy."
"I had fun/that was fun."
"I love you."

Is it Wednesday Already?

Besides not having much time to write about Monday's appointment, it was also almost another non-event. More questions, all of which I am getting used to answering. The center was really nice, with a big huge playroom/waiting room. Jake liked it for about 5 minutes then was ready to go. We spent most of the interview talking over an almost hysterical Jake.

The outcome was simply that they want to test Jake for Autism Spectrum Disorder. Although the lady that I spoke to (I can't remember her name at this time) could not really give me a ton of information, she did agree with me that Jake has many of the symptoms of PDD-NOS she also reassured me that there are huge variances under that particular name. I asked her specifically about stimming and whether or not I should try to stop Jake, or how much was too much, etc. She said that it was a very good thing that I didn't have too much trouble stopping Jake from his stimming behavior by offering to take him outside, etc, and encouraged offering him alternatives without ever punishing him or depriving him completely of an activity which obviously soothes him. I am referring to his habit of laying on the floor for hours, if left to it, twirling sticks or arranging other small objects and making a "click click click click hissssssss" noise with his mouth. Other ways he stims are: twirling my hair or trying to chew on it, peeling wallpaper, hand flapping, and most recently, licking objects that are interesting to him like rocks from the river today. The licking is kind of funny, seeing how as a baby he NEVER ever put anything in his mouth to explore it.

The lady (sorry, name still escapes) who interviewed me asked me how early I noticed that Jake might be "different" and I tried several answers that didn't sound right and finally I settled on "Now that I have a child that seems to be developing normally, I would have to say, in hindsight, I noticed the first few weeks." She put down her pen and watched me try not to burst into tears and said, "Please know that I hear that answer from parents with an older sibling in the spectrum many MANY times. Right now is the perfect age to start therapy, whether you had known before or not." That made me feel a lot better.

I was humbled by meeting a couple of kids that day who were Jake's age but not nearly as verbal or responsive as he is right now. I am so grateful that I have a connection with my boy.

Jake's appointments, five in all, to be tested do not start until August. I am very disappointed in that, but am hopeful that they might open up some more appointments. Meanwhile I am exploring other avenues, including getting involved with the school system special education department to see if they can point me towards some speech or occupational therapy sooner.

Steve ran into Ms. Dixcee, Jake's former pre-school teacher (we had to remove him after a few months) and told her that we were pursuing this avenue and she was thrilled. She has a sibling who had a pervasive developmental disorder years ago and at that time there was nowhere for them to turn, and no name for many of these issues. She told Steve that we were doing the right thing, and that makes us feel good. She's a wonderful teacher.

I keep meeting amazing people through this blog and my AP support groups. People talk to me about their children, some of whom I have met numerous times, and I haven't noticed that they are like Jake. What's going on with our kids is something that a lot of the times only WE notice as parents while spending tons of time with them. A customer of my Bratsacks store found this blog and wrote:

"..... I hope you don't mind me emailing you but i wanted to offer you some support and an ear or eye (in the case of email) anytime you need it.

"I was reading about Jake and just wanted to let you know that you are not alone in this.
I have a son.... with Asperger's Syndrome....he will be 21 in June. Back when I was having those same feelings and thoughts you are now, there was NO ONE or NO WHERE to go for help. It was like reinventing the wheel. Today finding myself parenting 2 LO's who are also on the spectrum it is AMAZING to see how far we have come in diagnosing and getting some help for our children..or at least having a better understanding.
I just wanted to offer you some support and let you know that if I can ever offer you some help in anyway I am just an email away."

How amazing is it that a complete stranger would write such a wonderful thing. I was blown away. Thanks :-)

Some days Jake acts more like a regular 3 year old, and then some days I see more and more symptoms and I don't know what to do. I wish I had a crystal ball for 15 seconds so I could look into his future for just a second. I wish that he would draw again and would tackle other kids his age. Although it was such a hassle for him to tackle, it beats walking circles around the playground mostly looking at the ground or hiding behind a sign. Sometimes I'm very hopeful, and sometimes I have nightmares. Its a constant rollercoaster. Meanwhile.. there's another stack of forms for me to fill out and a thousand questions to answer. And meanwhile.. Jake still makes me smile and laugh all day long and is learning and changing every day. He's a happy little guy with a huge heart and a wonderful personality. He worries his mother to death. What parent couldn't say the same about their own kids? Like I said, the differences are subtle ;-)

Tomorrow

I am tied up in knots about tomorrow. I am trying very hard to tell Jake that we're going to a cool new place to "play" and hoping that he doesn't get nervous vibes from me, even though my hands go numb thinking about it.

I have no childcare options for Manny, nor do I seek any, so I will be wearing him as usual. I hope that I am not judged for this as I have been in the past at doctor's appointments where I have been asked, even by an osteopath, "Can't you leave him with someone?" I hope I can relate to the staff that having both children is my life, and if therapy is required, that I need to be able to adopt a regimen that is friendly to having both children at all times.

I am also worried about what I will be told. Wish me luck on sleeping tonight.

A convo with Dad

I urged my father to read this blog, but whether or not he will, or if he will read it in its entirety is doubtful. If you do read this dad, I'm hope that this post doesn't offend you, but I think that our conversation today pretty much sums up what I am up against.

During our phone conversation, I decided to confront my father about Jake's issues. He began by saying that Jake is just Jake, and that he puts little stock in these "doctors" and their "cures." I think I have covered my feelings on being told that "they diagnose everything these days" in past blog posts. I won't go into it again, but I will say that after I explained it to my Dad, he seemed to understand a little more.

I guess one of the statements that Dad made that really truly hurts is that maybe I "shouldn't mention or discuss this with other members of the family." Wow, how truly southern. I asked him why I should be denied the love and support of my family. Should we really sweep Jake's issues under the rug and not talk about it? Are we to be that family at the reunion where others whisper "Yes, there's something not quite right about that one, we don't know what it is, but they say they've got him in some special school or something", yet nobody comes up to us and says "How are you holding up? Is there anything we can do to help? or If you ever need to talk.." My children are my everything, and these worries about Jake consume me, so its pretty much a given that its ALL I want to talk about. And talk about it I will, nothing can stop me. I suppose I will be avoiding more and more family gatherings if this is to be the climate. I mean.. why bother with family unity if there is no support system? My mother might argue that I have not "been there" through certain family crisis, but who is the parent in this situation? Even though I am a parent to my own children, do I not deserve parents to support me in my time of need? Since several years before my marriage, I feel that my best and only support has come from a few very close friends, actual support groups, and now my husband. To be told not to seek out what should be my very first line of defense, my family, even though it doesn't come as a surprise, really hits me hard.

While at Mamaw's recent 80th birthday party, I spoke at length about Jake to my very favorite cousin, who happens to be my parent's age. When I was a teenager, he singled me out at a family gathering and told me "Don't be afraid to be whoever you want to be, and trust me, I know how hard that can be in a family where every member tends to keep their head in the sand. It ok to be different, and you know what I mean." I mentioned the lack of acknowledgement and support that I'm experiencing concerning Jake and he laughed and called our family "The Empire of Denial". He also told me that he was 50 years old before the family stopped asking him why he wasn't married. We laughed (I don't think I have to explain the punchline).

All in all my father seems to "get it" a little more, but I'm pretty sure that he'd be just as happy if I never ever mentioned any of my worries again. Unfortunately, I can't do that. Life is uncomfortable, and being emotionally unavailable is not the solution. Our conversation ended by my dad telling me that he thinks I'm doing the right thing and that he'll support me in what I'm doing. I really can't ask for more.
I love you Dad.

Waiting for Monday

The meeting with Jennifer B. from Babies Can't Wait was another non-event. She said that he is definitely scoring below average on communication and social skills, so she will turn his information over to BCW. However, since he is so close to being 3 years old, they may just turn it over to the school system.

Jake will be going to Team Centers in Chattanooga on Monday for what they called an "interview and observation." This avenue has me the most hopeful of getting a diagnosis and maybe some therapy. I am still tied up in knots waiting to find out something.

Meanwhile Jake is happy as a clam and making progress every day. Sometimes he bounds forward, only to regress the same day into some sort of neurotic behavior. Its a constant roller coaster. I find hope in talking to a new friend who has Aspergers and was diagnosed at 16. She says that she exhibited scripting (quoting) behavior, peeling and other activities that Jake seems to enjoy. She is an intelligent, cool lady with a relationship and beautiful son of her own, so talking to her always makes me feel better. I just hope that I don't drive her crazy with my constant questions. Jake and his well-being are first and foremost in my thoughts these days, and I often dominate conversations by talking about him.

There are so many activities going on around the area this weekend we just can't decide what to do first! Hopefully it will make Monday come sooner.

No light at the end of the tunnel yet...

....but at least I can see the tunnel.

Jake's trip to the pediatrician went pretty much as expected this morning. By the time Dr. Ho got in the room Jake was ready to go. Jake reacted to the doctor with sheer terror, which I didn't exactly expect, but since I'm used to talking over him while he wails and pulls me to the door, we tried to have a conversation. Dr. Ho asked some questions and pretty much took my word for everything and gave me the phone number for the team evaluation. We take him there next Monday. I asked the lady who made the appointment what would happen if he just freaked out there like he does other places. She said that they have a huge playroom full of stuff for him to play with. That made me feel a little better.

I was really surprised by Jake's reaction to Dr. Ho. I can't imagine what it was about, seeing how Dr. Ho hasn't even seen him since he was 2 years old and has never EVER done anything stressful to him. I actually wonder if his very Asian features threw him off. It was strange, as Jake hardly knows what shy means, yet he screamed in terror and hid behind me when Dr. Ho approached him. I was perplexed.

After the pediatrician appointment it was a "good day" with Jake. He was rambunctious and laughed a LOT today and was into everything, wreaking havoc all over the house. I love those days even if they are tiring, much better than the days where he wants to lay in his room and stim all day. At one point he pointed to the cabinet and said "Mommy hey mommy hey Jakey Jakey tell me what you want Jake want want birdhouse, no its a birdfeeder, tylenol, vitamin" This means "I want a vitamin" in Jake-ese. He's listening to me tell him how to ask for things, and he's working it out. He did some more experiments with sentences today and seemed fascinated with noun and verb combinations like "drink juice" and "baby drink" and on the way home from the dairy he said "Cows..... eat..... (full minute pause) GRASS!" He also showed me some sign language that he's learned from his Baby Signing Time video. It was a good productive day.

Treatment vs. Cure

I was asked a thought-provoking question, and I wanted to elaborate on the subject. If we are not interested in "curing" Jake, and if we want to accept him for who he is, why am we pursuing treatment and therapy?

Jake's issues are social, not physical or medical (hopefully). They are subtle, and if you don't spend a lot of time with him, you may not notice them. But they do affect his ability to function and sometimes to be happy. Jake wants to interact with other children, but trying to do so overwhelms him and he may end up isolating himself. Jake wants to ask for a banana but trying to do so is a long and drawn out frustrating process that ends with a meltdown that may last for hours. Jake wants to stay at the zoo and is running excitedly from one cage to the other identifying all the animals, but because a busload of boisterous students show up for a field trip, he ends up hiding in the bamboo and quickly becomes hysterical if I try to remove him. Watching him engage in stimming behavior for hours and showing little interest in anything else is worrisome as is his constant parroting and the fact that he has no expressive language. He has weaknesses that we simply want to help get stronger, we aren't interested in changing his personality or who he is.

If a child is born with a weak arm or leg, the parents opt to do physical therapy. It may be a tiresome process, but the physical therapists make it fun and they use games to make it enjoyable for the child. Nobody questions that this child needs therapy.

I never thought that I would meet with so much lack of support or even an acknowledgement from my family and even resistance from my friends and it is wearing on me and I'm sure my frustration is apparent in these writings. At least my grandmother, Jake's Mamaw seems to be on board (except when she's laughing it off or embarrassed because i mention it in front of someone else). She spends more time with him than anyone else besides Steve and I, and she can recognize that some intervention like speech or occupational therapy is needed. She is such an amazing source of support and understanding for me and I'm so glad to have her. Her 80th birthday is tomorrow. Happy Birthday Mamaw!

Tomorrow I take Jake to the pediatrician in an attempt to get a referral to a specialist. I am very apprehensive, not only because I have no idea what I will be told by Dr. Ho, but because Jake just does not do waiting rooms or anything else that involves waiting. Dr. Ho's office tends to have a long wait-time and I'm afraid he may melt down quickly. However, Jake has a way of surprising me when I'm nervous about how he'll handle a situation. I may call ahead and ask if there's a way to avoid the long wait. Update tomorrow.

What NOT to say....

...when someone tells you that they suspect that their child may have a social/learning disability.

1. "Oh, he's fine, don't worry about it."
Despite the fact that you may be in the presence of a child who is beautiful, laughing, and happy, the parent that you are talking to has spent countless sleepless nights (perhaps for years) worrying about their child. They are the best judge of whether or not their child needs to be evaluated, and this statement simply isn't helpful. Besides that, it is dismissive of their fears.

2. "Oh, all kids are different, just let him be himself."
The parent may be dealing with a child who is "especially different." It also implies that the parent doesn't love and accept the child for who he is. And again, it is dismissive.

3. "Did you vaccinate him?"
Wow. How can you ask such a question? This implies that the parent recklessly caused the child to have a disability by ignoring the warnings that circulate in the natural parenting community. I have been asked this too many times to count by parents in the AP community, which is the community that I relate the most to, and choose to associate with. If you are worried about your own children and wish to discuss the vaccination debate with a parent of a child with a disability, there are other ways to open up the conversation in a more sensitive manner such as "How do you feel about vaccinations." For the record, Jake was fully vaccinated. Manny is not.
I am 100% open to discussions about vaccines. However following "We may think that Jake has a spectrum disorder." with "Did you vaccinate?" is accusatory and hurtful. You don't ask a parent who's child has a bruise "Well, did you hit him?" Other things may have caused the bruise.

3. "They want to diagnose everything these days (or anything concerning over-diagnosis)."
Its true that a lot of things are being given names these days that we used to not consider, however, when it is YOUR child who is having issues,all you want is an answer, and if giving a name to the particular group of symptoms that your child is experiencing is helpful, then so be it. I have talked to parents of adult disabled children recently who deal with great resentment because their children lived during a time when there was no treatments or programs available to their child. DIAGNOSIS does not hurt anybody, nor does physical or occupational therapy. This is yet another dismissive statement.

4. "I've noticed some things in the past, but didn't want to say anything."
There is simply no point in saying this. I have been delicately and sensitively approached by people in the field of child development concerning Jake's issues, and although I may have been a little bit defensive, I took their advice to heart, and it has helped me. This is a statement that is better off kept to yourself. It implies that you are better qualified than a child's parent or other caregivers to know when it is time for evaluation.

5. "But he's SMART!"
Of course he's smart. When dealing with spectrum disorders you are often dealing with children with high IQs and amazing skills, like Jake's drawing, reading and writing, for instance. This does not mean that the child would not benefit from some social therapy. It simply isn't helpful to point out the obvious and it implies that the parents are paranoid, overreacting, or seeking help that their child does not need.

What should you say? Just something supportive. Maybe "If you need to talk..." or "You have a beautiful child and I know you love him. You'll do what is right." or even better "My children would love to play with your child." If you have experienced a disability or other crisis, share stories and insight. I know that people don't always know what to say, and thats OK, just think before you speak.

ETA:
This post may sound angry, but it came after a particulary hurtful conversation, the tone of which was that we are actually doing a disservice to Jake by having him evaluated. The AP community seems to be so bent on being kind to our children, that we forget to be kind to each other as adults.

The Watch Inspector

Jake loves watches and clocks. He's absolutely obsessed with them. When he meets a new person who either A) has on a watch or B) has on long sleeves so that the possibility of a watch is present he will look at them and exclaim "CLOCK CLOCK!" Of course, if he can reach them, he will simply put their arm in a death grip, but we avoid this situation if possible. If he's riding in a shopping cart I have to give other shoppers a wide berth, or he might "attack" and grab the arms of complete strangers.

He only wants to see each wristwatch one time. I recently realized this when Mamaw, Jake, and I were walking a circular track with Jake in the stroller and Manny in the carrier. We met a nice elderly couple, neighbors and friends of Mamaw, who stopped to talk and obligingly showed Jake their watches. The lady had a really neat "I love Lucy" watch. We departed from them, but met them once again and Mamaw engaged them in another conversation. Jake became restless, and the couple, being the grandparently type, went to show him their watches again in an attempt to console him. Jake adamantly pushed them away. Since then I have noticed that he is completely nonplussed by seeing a persons watch a second time. And yes, he has his own watch. Numerous ones, in fact. He won't wear them. He also freaks a little if I wear a watch for him, which is fine, I hate them.

A friend (thanks Carrie) suggested that I get a pediatricians referral to Siskin in Chattanooga so that I can have a medical diagnosis for Jake, something that I can not get from the school system. I will start working on that tomorrow.

Steve is having a bit of a hard time with this process. I suppose that I've been preparing myself for almost the entire 3 years of Jakes life for this, and Steve is more likely to look on the bright side. Its even hard for me not to see the impending diagnosis of a disability as a "death sentence" however I know that Jake has the capacity to be excited about things and to look forward to events with happiness, so I have so much hope that he'll be a happy dude. I think that I don't put so much importance on how he will "perform" in school or society, just that he will be happy and fulfilled. Maybe that improves my outlook.

I must put my tired self to bed. There's even more work to be done tomorrow

Getting the Ball Rolling...

Well, a couple of balls, actually.

I talked to Patti S. today with the school system special education department. She will be sending me a package with all of the information that they will be needing to evaluate Jake. He will have to have a vision and hearing screen, or at least be seen by the pediatrician and have him declare that he seems to have no hearing or sight issues. She told me a little about the evaluation process. She said that Jake will be evaluated by a preschool teacher, a speech therapist and a developmental specialist in a "play environment." He will be taken to another room (we can see him, she said) and worked with with the evaluators, while we are interviewed. Or, of course, if the child won't go without one of us, which may well just be the case with Jake, then a parent can be in the room. Steve will be going with me, he said that he wants to, and most likely Manny will be there too, since we haven't really left him anywhere so far.

Just after I talked to her, Jennifer B, a developmental specialist from Babies Can't Wait called to set up a home visit. I told her that I had already talked to Patti, but she didn't care, she said that she could come by and do the home evaluation anyway. That is actually great, because I'm so anxious for something to happen. She will be coming Tuesday at 10 AM.

I hope its OK that I'm working with two separate programs, but Jennifer said that she's not sure what will happen since he's so close to 3. I'm just anxious for some answers.

Progress

I called the headstart program only to find out that that is the wrong place for me to call. They are a preschool program that would be happy to have Jake enrolled, however they do not do evaluations. They referred me to the school system's special education program.

I did receive a call-back from the special education coodinator. She sounds super-nice. I will call her back tomorrow, as she left me her home and cell phone number,even though she has a day off tomorrow.

In my experience, and I have a feeling that this is a localized phenomenom with small towns.. the early intervention programs are rarely utilized by parents, and are more often contacted by daycare workers. In my town it seems that most mamas work, and WAHMs and SAHMs are a rarity. We have some beautiful and well maintained parks around here, yet, at lunchtime on the most temperate day, they are abandoned. Jake, Manny, and I often travel 30 to 45 minutes to Chattanooga just to find a park that is inhabited and feels safe. I portray all of this information just to give readers the idea of the climate in my area (but I digress).

I get the feeling that local special needs and special education workers are more than happy to work with parents who are willing and cooperative. I am interested to see what is in store for us concerning the special ed. evaluation. More to come!

Gut Flora Essay

I wanted to include a link to this essay in my blog. I think I'll actually add it to the links section (that I have yet to create). Whether or not Jake is autistic, or if there is some other explanation for his particular symptoms, I feel like this is possibly the only piece of literature that I have read that can explain the "epidemic" that this country is experiencing concerning autism and spectrum disorders. Before I was a mother of a child with spectrum symptoms, I didn't have as much trouble chalking it up to "overdiagnosis.". Now I am looking for answers. As a second generation formula fed child (I was given misinformation on this, so I triple checked with my grandfather to make sure) and a c-section baby.. this essay really hits home. Its something that our generation can not change, and something that our parents were not educated about, although we CAN treat the gut flora issues of our own children. I think that parents with children experiencing autism, autism spectrum, ADD/ADHD, depression, OCD, etc. should read this article. Thanks Rachel for forwarding this to me. It at least shows us a way to start therapy that is not drug-based or potentially harmful. Link below:

http://www.behealthy.org.uk/gaps.pdf

History

Jake was born at Hutcheson Hospital in Fort Oglethorpe, GA on May 30th 2005. I had a natural birth that was "good" experience (although I hadn't experienced homebirth yet). By the time he was 3 months old I began to realize that he wasn't like other babies. He just didn't "move" like other children. By 6 months Jake was sitting up, but not pushing up on his elbows, and by around 7 months I began to realize that his gross motor development seemed to be a bit behind, although I didn't know how to voice it and mostly listened to others tell me that he was "fine" and that "all babies develop at their own pace" etc. At 10 months Jake wasn't mobile at all. He could sit up, but had to be put in that position by someone else. If he fell over, well, that was it, he was stuck. He never crawled or rolled.

Around 11 months Jake began to scoot on his butt. At least he was mobile! I read and researched and convinced myself that this was normal, because in fact, a lot of kids don't crawl who don't have any other issues. However, when he wa 18 months old and still scooting while showing very little interest in walking, I was worried and called the local Babies Can't Wait program, State program for early intervention.



After a long and worrisome evaluation process, Jake was found to have "no significant delays" by the evaluation team, in fact, they were impressed at his fine motor skills, and pretty much chalked his lack of motor development up to the fact that he was concentrating on his drawing.

Jake has always shown an advanced ability to draw. He loves painting and was drawing recognizable characters by the age of 2. After his evaluation I was relieved and very willing to overlook Jake's other quirks and odd behaviors. Only recently have the signs been too much to ignore.


Here is where it might get hard for me to explain (or maybe that its just hard on my heart to write it down all in one place). Although Jake has a lot of "words" he rarely uses words and phrases appropriately. He parrots phrases from television or that we say ourselves but doesn't seem to know when to say what. For example: His gross motor skills still aren't great and he falls down a lot. When he falls he often says "Oh Jake, are you alright? Are you ok? You're ok, You're alright." For a long time, ever time we would go to change his diaper, Jake would say "Pinky, are you going to make up a story?" a catch-phrase from Pinky Dinky Doo, a favorite TV show.

Jake is obsessed with odd objects. His favorite two are "Sticks and Spatch" which consists of two rhythm sticks from a musical instrument kit, and a plastic kitchen spatula. More recently he has simply begun to collect a ton of little things.. refrigerator magnets, bottle caps, paper wrappers, greeting cards, pictures of family members, screws from his toy toolbox, pieces of fluff from a toy the dog chewed up, scraps of fabric from my sewing, scratch off lottery tickets, and the list goes on. He collects these in his tent (where he sleeps) or in the middle of the floor and uses them for "Stimming" a kind of self-stimulation behavior commonly found in autistic children. I am just now finding out, through reading and researching, that stimming is what he is doing, although I've been aware for months that he enjoyed twirling odd objects in his hands while laying on his back and staring, and more recently, clicking his tongue and making odd breathing noises.

Jake has begun peeling the wallpaper and the covers of board books. Once he gets it into his head that he wants to do this, it becomes and obsession. A boy who is usually not a climber or a fan of heights becomes a daredevil, bringing objects from all over the house so that he can climb on them and be at a height where he can peel the baseball border in his room.

I could keep writing about his symptoms and behaviors, but I'm tired. I will write more about his little quirks (some of which are kinda cool, actually) as time goes on and I think of them. Meanwhile, if you want to know about other signs that Jake shows, THIS PAGE describes his symptoms to a tee.

I have recently begun to pursue diagnosis for Jake. I am having no luck contacting Babies Can't Wait, which is not surprising as he is almost too old for their program. I have contacted Head Start and have been unable to get a return phone call. Next week I have the go-ahead from Steve to take Jake to the pediatrician for a referral so that we can take the private route for diagnosis or treatment.

The thought that we may have a child with a "disability" both terrifies and confuses me. While I wouldn't change anything about my beautiful son, I worry myself to death hoping that he'll be OK, and I deal with the guilt constantly that I could have done things differently to make his life easier. I want to know if Jake will ever be able to carry on a conversation at some point in his life, or if he will be "high functioning" and be able to fall in love and have children one day. I am very very anxious to begin the diagnostic process so that we can have some insight.



I feel like this first post focuses a lot on the negative and my own fears so I want to say that Jake is a delightful little dude. He loves music, drawing and most of all, his little brother. Jake has said I love you exactly twice that I understood, and the first time it was to his little brother. The second time it was to his Dad. Nah, I'm not jealous, I was so joyful to hear it that it didn't matter if he'd said it to the dog! Jake loves the outdoors as well and I can't wait until good weather to begin camping again. I'm hoping that his love of sleeping in his "tent" will carry over to camping!

I love this guy with all of my heart, and would never want to change or "cure" him, just get his dad and myself the help that we'll need in order to help Jake have the most rewarding life possible... the same thing every parent wants, I'm sure.