It’s been too long since I’ve provided an update on Jacob, mainly because we’ve been delayed in having evaluations performed (thanks to snow and sick children). Although some of you may not care in the least about my six-year-old son and his challenges, there are others out there reading this that do benefit from my occasional reports. I love receiving your emails, whether it’s to vent about your own child’s challenges, to offer hope, or to say I know what you’re going through.

My husband and I attended a meeting at Jacob’s school on Monday, where we met with several people, including Jacob’s kindergarten teacher and two Academic Intervention Specialists. I requested this meeting, nay; I began fighting for this meeting and pleading Jacob’s case back in October 2007. 

Based on initial reception and testimony that the school district is the enemy, I was certain I would go into this meeting and receive the cold shoulder. Jacob’s pediatrician first recommended we meet with the IST (Instructional Support Team) as a possible first step in getting help with Jacob’s supposed sensory issues, particularly with how he relates to food. I say supposed, because he has never been formally diagnosed with anything. Jacob’s pediatrician reasoned that if he were to receive Occupational Therapy in school that might work in resolving his food sensitivities.

Do you know how difficult it is to get help of any kind unless you are formally diagnosed with something? It’s not often that professionals are willing to help based on a mother’s hunch. Some people may question my continued persistence with having Jacob tested, tested, and tested some more, but here’s the thing: we (meaning mostly me and the peiatrician) know that there is something unique about Jacob. In my heart and soul and gut, I know that he is special and, perhaps, extraordinarily gifted. However, his uniqueness often gets in the way of normal day-to-day functioning, and that’s a real problem.

In addition to Jacob’s sensory issues, he’s lagging behind in his fine-motor ability. The IST didn’t want to meet with Jacob or us about his sensory issues alone; at the time, they felt we needed to see a doctor in a private practice in order to get help for that. I’m not sure how much our health insurance plan will cover for that type of therapy. Frankly, I’m scared to find out. However, the IST was willing to meet with us in regards to his fine-motor skills because, in their opinion, that is definitely something that would affect his ability to learn (you think?).

On a side note, I’ve been reading a book by Dr. Mel Levine called A Mind At A Time, which I’ve been talking about at www.LisGarrett.com. It’s a fascinating look at children, how their minds are wired, and how their brain plays an important role in their ability to function. If you’ve got a school-aged child who you suspect might be lazy, unmotivated, or simply a troublemaker, I urge you to read his book. It’ll make you think.

My husband and I arrived at the school and sat down for the meeting. The first thing that occurred was Jacob’s teacher assuring us that Jacob is one smart cookie. He scored well above average on his PALS, which is an assessment test given to students during various times throughout the year. In fact, he did so well on some parts that there is no reason to retest his abilities. Jacob has a fascination with numbers and, during his free time, often writes the numbers 1 to 100 repeatedly on a piece of paper (he does this at home, as well). This is not normal behavior for a kindergartener, and it’s definitely abnormal to have such an obsession with numbers (at his age) so that it consumes him.

Jacob still is quite anti-social at school and doesn’t make eye contact with many people outside his comfort group (namely us). He has formed a strong friendship with another little boy (who we had over to our house recently – fine young lad!). Jacob is not malicious; in fact, he is quite sweet. However, there is a boy whom Jacob likes to provoke. According to his teacher, Jacob enjoys drama and gets a rise out of seeing this other little boy effectively blow a gasket. I nodded my head in agreement and attested that Jacob often provokes his sisters intentionally. Don’t hit the nice kitty, Bridget, he will say, even though Bridget may have had no previous inclination to do so. Then guess what she does?

After his teacher concluded, we heard from one of the specialists. She shared her concerns not only about his fine-motor skills (which are actually graphomotor skills), but his speech, as well. She found him to be pleasant, but almost lifeless (he often won’t eat much at school). He barely made eye contact with her and shuffled when walking down the hall (yes, he does that at home).

Jacob scored perfectly when tested about certain aspects of language and was able to associate letters with their respective sounds. He was even able to provide an example of an object beginning with each letter, above what children his age should be able to do. She had Jacob copy words on a paper and noticed his weak pencil grip and almost inability to bear down with the tip in order to produce any sort of mark. Jacob also did something interesting to her, which merits further investigation, in her opinion. Instead of copying the words one underneath another, he copied them at a perfect diagonal. She said this often signifies some sort of perception dysfunction. When asked what makes school difficult, Jacob replied, When we’re at the reading tables, I look at the words, and they just disappear.

Both specialists see a real need to have Jacob evaluated further. So, here we go again. While still in preschool, Jacob was evaluated and determined to have no issues that warranted intervention. Yeah. Right. I remember leaving that meeting with the Committee for Special Education and sobbing in my car because I knew they couldn’t be right. Their determination was what prompted us to take him to a child psychologist. She was the one who alerted us to the fact that Jacob hovers on at the autism spectrum. We still can’t rule out Asperger’s. 

Now that Jacob is a year older and in elementary school, we have to again move forward with evaluations done through the CSE (Committee for Special Education). In short, we will, again, be meeting with the school nurse, school psychologist, school social worker, reading specialist, speech therapist, special education teacher, and a partridge in a pear tree. It’s their ruling that will determine if Jacob will be eligible for any sort of intervention.

I asked the two specialists, off the record, if they thought Jacob needed intervention. They both said definitely, whether it’s Occupational Therapy or Physical Therapy. When I mentioned that the child psychologist wouldn’t rule out Asperger’s, one of the specialists grinned and said,  I wondered about that.

Jacob is a special boy. It’s the sort of special that I don’t really understand. But, darn it if I’m not trying. The two specialists were impressed, I think, by how much I knew and understood about the whole evaluation process and how passionate I am about getting help for Jacob. One of them said, we can tell you have your speech memorized. I’ve been searching for answers since Jacob was a toddler, and I feel like I am so close . . .

So what’s the lesson in all this? I’ve received many emails from parents who say, we suspect. All I can say to you is, you have to go with your gut feeling. Aside from Jacob’s pediatrician, I have had no real support (although the support from YOU never ceases to amaze me). My family, husband included, wavers on whether or not they think something is different about Jacob. Different doesn’t mean bad. I am convinced that Jacob is a one helluva kid, yet I don’t know how to manage him appropriately. While we are getting some aspects of his behavior under control, there are others we don’t know how to handle: the strange noises, the obsessions, the quirks, his inability to understand personal space, his anti-social behavior, his food issues.

How can I, as a mother, ignore all of this? I don’t want him diagnosed with a disease, disability, or dysfunction for the sake of labeling him. I don’t think it would be cool or hip to say I have a child with Asperger’s and then flaunt him like a new accessory. I am well aware of those who make the argument that too many kids are being diagnosed these days, for whatever the reason. Is it environmental? Genetic? Both? Jacob’s problems didn’t manifest over night; they have been present since infancy. I knew, I knew, from the minute he was born that something about him was different. But God, how I love that boy . . .

Getting back to suspicions. Don’t delay! If you suspect there might be something not quite right about your child, talk to your pediatrician. Early intervention is best. In my case, I proceeded with little support from my husband. That’s not to say that he is a bad father; he is reluctant to admit our son might have real issues, behavioral or learning. As far as I’m concerned, even though Jacob is our child, I don’t need my husband’s permission to talk to the pediatrician about any concerns I am having. I handle their healthcare anyway because it falls into the jurisdiction of me being a stay-at-home mom. Will I consult with my husband and family first? Absolutely. However, they won’t determine what I do in the interests of my child. If I thought Jacob had a broken leg and my husband thought it only a sprain, do you think I would hem and haw about what to do? Of course not; I would receive professional help and guidance immediately.

I have my own paperwork to fill out now and get back in ASAP. The one thing about dealing with school districts and committees is that everything takes a long time. Too long, as far as I’m concerned.