,Yes, if you put the doings of the world aside, I truly had much to be grateful for.
I have a home and a family, my health is only taken down by the various viruses my grandson brings home from school. that's pretty amazing, as I entered my 6th decade, no drugs or treatments, jut aches and pains... I am grateful that so many friends have settled... made a change in direction, and most are content, it is awesome to watch. It has moved some of them further from me; as they have lives and hobbies or schedules that no longer mesh, But they are happy. I cant remember a time when most everyone I know is happy. I truly see the working of God in this, and I can but rejoice. This was the year of a significant breakthrough. My grandson can talk. He will be 5 next month. That story takes in several years, an understanding of our expectations with a new child, a whole lot of prayer, and work, and tears. Just after his second birthday, and a rather major viral illness, he stopped talking at all, he had a few words before that, then nothing.he would get frustrated easily.His balance was poor. it all looked... well, as if he would have severe limits.. it was sad and scary. we knew his dad had speech therapy as a child but that was it, as dad is not in his life we don't have much info, except what relatives have offered We learned some sign language, some other things to help us talk to him, and could see his frustration, his outbursts, as he stayed in a world where he could not tell us what was wrong, he was often cheerful, even funny, loved CARS the movie, so his room has a race car bed, is painted boy blue with CARS fatheads all over the walls,he could prove to us with things like ABC mouse he actually understood a lot... numbers, shapes colors, Grandpa built him a fort, he was up that ladder like a shot, and down the slide almost as quickly. (early last summer) he enjoys trips to the garden with me, loves the chickens and the goat. Along the way we met specialists, who deemed him to have global development delays,anxiety problems and language problems, possibly apraxia. A diagnosis was required to get him speech therapy, but the constant ear problems were ignored, and only during one significant infection was he given antibiotics,hearing tests ran from problematic to normal, an MRI,, yes on that 3 year old baby, and yes it takes that long to get appointments on all of this...did not show the "zebras" of water on the brain or stroke scars or,, anything else,except fluid in the mastoids,, also problematic for hearing, It was ignored, his genetic testing was normal. He switched doctors several times for routine care, the first one retired, the second one couldn't take his screaming every time he was undressed the third one declared him autistic, (which specialists in the field had agreed was not his problem) and then she quit and moved.working on a 4th now,with an office of fine doctors, but he has not needed vaccinations or any other care, for months, and our caution with a new doctor is certainly warranted. It was the therapists who rallied for this child, mainly his speech therapist. She never gave up. The specialist has signed orders for early intervention education for him, It took 2 years, and the speech therapist's intervention, before our county took it seriously and bothered to interview my daughter and test the child to see if he qualified, it was many meetings, an insistence on seeing him in his home environment (we got that waived, they met at a neutral space,such an intrusive request and, frankly, I have dogs, they bark,such a visit would have been useless) it was endless paperwork and foot dragging, but he got to go for the last few weeks of school. he enjoyed it, he used his sign language a bit, and he seemed to like it it was far better than we had hoped. To be clear; a non verbal child is considered untestable. Untestable is basically considered not much more than a cute vegetable in ability or future prospects. when you are already frantic over your child and his future, the attitude of supposed friends , who mock you and tell you, kids autistic give it up stop being proud,,,was devastating for my daughter. (my friends were supportive just to be clear). alone, told by ..ahem...non medical people she was stupid, with a child who could be a trial some days, trying to finish college, watching her anxiety and anger and fear has been one of the hardest things I have ever been through. Jackson and I have had a bit easier time, I cannot explain that, maybe all grandmothers feel that way,he is my first and only grandchild, and I raised one daughter, so about boy things or grandchild things, I am am pretty much clueless. She found a church, but he was so reactive to the noise of people walking to the sanctuary, we quit going, it was just too hard, the folks were great, but a child screaming in the nursery was too hard on all of us.we have been in effect, without socializing except for close friends, for several years. No one has ever explained his problems with reverberating sounds, or his apparent perfect pitch, useless unless he chooses to play an instrument. its just pain for him if music or noise is off key even the slightest bit. On July 4th, as grandpa set off the fireworks in the yard. he said wow, a number of times, I have a video of it on my phone. Happy but aware we still didn;t have. proof, (some have insisted he only mimicked, like a parrot that he had no grasp of actual language) the words began to come, steadily building and in August his speech therapist, with tears in her eyes confirmed he was actually speaking and using language. By the time school reopened, it was sentences. He loves his teachers and his school, he can count to thirty, he loves looking at his books, he is reading some words in those books, the whole process other parents and grandparents experience over several years, we have had happen in only a few months. It is overwhelming, and to be honest, when the therapist confirmed he was talking, I fell to the floor, to my knees and praised God and cried,, I guess that seems strange to non believers, but I know this is a miracle. Since that time, we have learned a lot, His dad actually didn't speak until 4, that was a surprise admission from a relative. His grandfather, Megan's dad, was late in talking ( but has made up for it since let me tell ya) There is a male developmental pattern that puts physical development ahead of things like speech, They are often detail oriented, Jackson takes everything apart, he makes scenarios using whatever he can find, tow trucks pull cars on strings, structures get built out of amazing stuff, there are other parts of this pattern that he fits to a tee. the person who directed me to the research, as I was praising our local teachers to him in our discussions during election season,,,, is our state delegate Nick Frietas, God sends me interesting angels for sure. Which has led me to another season of anger. Not one doctor said, well maybe he is just developing on this different path, or,, don't worry boys like this often do fine. If all advice is so generic, just a matter of a piece of paper authorizing therapy we need to focus on the people doing the hard work, the therapists, speech and occupational and physical therapy (his balance has greatly improved) and do everything we can to support them. Teachers too. We had thought we would have to homeschool, Non verbal children are bullied; over the last few years, he has been treated as if he were, stupid, non human, by well meaning but unintentionally cruel folks, and kids ... can be worse. That child you thought was a moron makes up stories, has amazing insights, and has a high level of empathy for other people.He tells jokes! it is easier now that he speaks, for us to engage in his world, but we were determined to be in his world even if he never spoke. sign language;computers whatever it took. This has led me to cry and pray for all parents with children who are different, this is basically a healthy child, those who have physical challenges on top of learning problems, it is amazing how well their parents cope. We have met children with every diagnosis under the sun Jackson is used to autistic children and downs syndrome kids; those who cannot walk or talk, Jackson is quite gentle with other children.. well except his cousin Noah, they can get into it yes, we laugh. they really do like each other,,,sometimes. and it is more sun than rain in that budding friendship I do not want to make anyone feel they are wrong in expressing to someone else,, this child has problems, get help, or to infer that autistic children, especially, are lesser. These kids all have unique talents, and one of the great blessings of the modern age is in seeing differently abled people as valuable. Nor do i wish to imply that God gave us favor and other people don;t deserve it. We are humbled by His love, baffled by our difficulty in getting help awed by the way the whole thing played out with perfect people in place for this child along the way, knowing other challenges will come along,,,because that is life and humanity, So raise your hands with us in praise , know we will clasp our hands in prayer with any of you at any time,believe in God's plans for your life even if they don;t match the plans in your head, and never ever give up on your child. May we all experience the peace that passeth all understanding, through our Lord and Savior Jesus Christ., |
Faith and ReasonA grandma's perspective on a few things.. Archives
May 2020
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