Hi everyone. I am the mom of a newly diagnosed son with autism. (September 2018) Since his diagnosis I feel as if I've been running in circles through sand. Truth be told, Im downright terrified of messing this up.
Brace yourselves, this is going to be a long read.
Deep down I feel I have always know my son was different. For backgrounds sake my husband has ADHD (inattentive) and was diagnosed later in life ( early 30s) after we had had our son. My son who I will refer to as T is our firstborn child. He met all his developmental milestones on time until the age of 2. At that time I was expecting his younger sister. He went through a lot of medical issues during those 9 months from serious dental work to correct damage done by a fall to chicken pox.
When I would worry abt his behavior (rigidity and aggression) both mine and my husbands families told me not to worry and that my son was a "carbon copy" Of his father in childhood. My husbands side also has a history of late speech in boys and that paired with the possibility of ADHD and a colicky new baby was enough for me to second guess my doubts that something might be different.
I am ashamed to say we continued on like this until T reached the age of 3 when he began to have huge shifts in his aggression and emotions. It was getting harder to go places and he refused to come inside from his favorite place -the car- for sometimes hours at a time.
We began to bring these struggles up to his pediatrician who did the MCHAT screening a total of 4 times over the next year. Each time T registered a 2 - 4 or not at all on the scale to which the pediatrician would say there wasn't substantial reason to refer to a specialist. The behaviors became attributed to schedules, sibling rivalry, family history ect until the summer T was 3.
We finally reached out to the school district to see if he would place in a program. Unfortunately it was the last week of school and we were wait listed until September. November of that year finally came around and it was an eye opener.
We went in to a classroom for a placement test with a few other kids and it was shocking to me to see how T was compared to other kids. He spoke drastically less and barely followed direction or made eye contact. He was repeating the same rote phrases over and over and I just kept seeing the teachers shake their heads silently out of the corner of my eye. The carefully too cheery smiles. The "well we don't know for sure.... "
Unfortunately the school district is not legally allowed to outright say to a parent that 'we think your child is on the spectrum'. I was given a speech about how my son needed speech therapy and placement in a smaller class size but that "even a child who needs say, 20 min, of speech therapy a week counts as special needs" on paper and how I shouldn't let it worry me.
We were given a possible list of hospitals to further seek "a closer look" at T if we wanted but how it was entirely "our choice, no pressure". While I can respect that they don't want any legal entanglements from an administrative perspective, it would have been lovely to been " Woken up" To the reality that T was different and my fears justified.
We started school 2 weeks later and right before Christmas break T brought home RSV (a sinus virus) and his sister ended up in the ER and admitted into an isolated ward over the holidays. Thus unfortunately research and the probing questions I had about T had to be placed on a back burner until his sister was healthy enough to not need a potential NG tube. T continued with school and happily made wonderful progress (we no longer spent hours in the car) while his sister went though the early intervention system.
It wasn't until about March when we had parent teacher conferences and his lovely, patient, absolute GEM of a human being teacher confided in us that she did indeed see some common autism traits in T (difficulty transitioning, need for structure) that we decided we needed to talk to a developmental pediatrician. This began the process of paperwork and wait lists.
We got him into clinical speech and OT that Summer (after a lovely argument with his pediatrician who to my absolute outrage said if we had seen these behaviors before "why hadn't we mentioned them before" -we switched pediatricians immediately following that particular remark. God how I wish we had done so sooner.) as we waited for his turn. He went through the extended school year program and enjoyed it immensely. We met his new teacher for his full official preschool year and she too was lovely and patient.
Finally came September of 2018 when we went downtown to see his developmental pediatrician. 3 hours later he and a child psychologist informed us that T indeed fit the criteria for ASD and I tried my hardest not to completely burst into tears as my son played quietly in the corner. I'm not going to lie. It hurt. All I could ask was if we were too late to get him help.
My main struggle is not that he has autism. I don't want him to hurt bc of it. People can be immeasurably cruel to those who are different. I know he is special but no parent wants their child bullied or ridiculed for being who they are or something they cannot control. I also know that shielding him in a bubble is not fair. I am ashamed to say I am not the best parent he could have. I lack understanding, discipline, patience and so much more.
I am so afraid. So afraid I have done or will do something to permanently damage him or his future because of what I perceive as "right" Or from a lack of understanding of his needs. I know a diagnosis does not change him. It just gives a name to who or how he already was. I just wish I knew how to proceed.
His development pediatrician suggested we continue in speech and OT as well as all the supports I'm school. He did not feel ABA was a default need for T as he doesn't need concepts broken down to that specific of a level. I know there is a lot of controversy surrounding ABA. For now our insurance does not cover it and the main providers in our area have rubbed me the wrong way with their need for a "controlled environment" so we have chosen to hold off on that option. I did try to get him floortime but it is very pricey and largely unavailable in our area. Right now I'm in the process of finding social skills groups and general behavior of therapy to help with general issues at home.
Thankfully T has continued to flourish amongst all this his speech improves daily and so does his regulation. He starts in an ILP kindergarten class this fall. The reason for this long post was to ask any parents but especially teens and adults on the spectrum what is it that you(r) parents/caregivers did or you wish they had done to help you deal with growing up in a world that favors Neurotypicals? What can I do to make life a little bit easier for my son? How do I deal with well meaning but very negative relatives? How can I be a better parent to a child who can't always convey his needs in a way I understand?
I don't want to limit him but I also don't want to push him too hard. How does one find the balance? It feels silly to ask this but how do I know he's truly happy? That the decisions I make about his care are in fact helping him? I know I sound a bit ridiculous but I'm finding myself kind of at a loss for direction lately. These are the thoughts that haunt me late at night.
Any and all suggestions would be appreciated Thank you for listening.
Brace yourselves, this is going to be a long read.
Deep down I feel I have always know my son was different. For backgrounds sake my husband has ADHD (inattentive) and was diagnosed later in life ( early 30s) after we had had our son. My son who I will refer to as T is our firstborn child. He met all his developmental milestones on time until the age of 2. At that time I was expecting his younger sister. He went through a lot of medical issues during those 9 months from serious dental work to correct damage done by a fall to chicken pox.
When I would worry abt his behavior (rigidity and aggression) both mine and my husbands families told me not to worry and that my son was a "carbon copy" Of his father in childhood. My husbands side also has a history of late speech in boys and that paired with the possibility of ADHD and a colicky new baby was enough for me to second guess my doubts that something might be different.
I am ashamed to say we continued on like this until T reached the age of 3 when he began to have huge shifts in his aggression and emotions. It was getting harder to go places and he refused to come inside from his favorite place -the car- for sometimes hours at a time.
We began to bring these struggles up to his pediatrician who did the MCHAT screening a total of 4 times over the next year. Each time T registered a 2 - 4 or not at all on the scale to which the pediatrician would say there wasn't substantial reason to refer to a specialist. The behaviors became attributed to schedules, sibling rivalry, family history ect until the summer T was 3.
We finally reached out to the school district to see if he would place in a program. Unfortunately it was the last week of school and we were wait listed until September. November of that year finally came around and it was an eye opener.
We went in to a classroom for a placement test with a few other kids and it was shocking to me to see how T was compared to other kids. He spoke drastically less and barely followed direction or made eye contact. He was repeating the same rote phrases over and over and I just kept seeing the teachers shake their heads silently out of the corner of my eye. The carefully too cheery smiles. The "well we don't know for sure.... "
Unfortunately the school district is not legally allowed to outright say to a parent that 'we think your child is on the spectrum'. I was given a speech about how my son needed speech therapy and placement in a smaller class size but that "even a child who needs say, 20 min, of speech therapy a week counts as special needs" on paper and how I shouldn't let it worry me.
We were given a possible list of hospitals to further seek "a closer look" at T if we wanted but how it was entirely "our choice, no pressure". While I can respect that they don't want any legal entanglements from an administrative perspective, it would have been lovely to been " Woken up" To the reality that T was different and my fears justified.
We started school 2 weeks later and right before Christmas break T brought home RSV (a sinus virus) and his sister ended up in the ER and admitted into an isolated ward over the holidays. Thus unfortunately research and the probing questions I had about T had to be placed on a back burner until his sister was healthy enough to not need a potential NG tube. T continued with school and happily made wonderful progress (we no longer spent hours in the car) while his sister went though the early intervention system.
It wasn't until about March when we had parent teacher conferences and his lovely, patient, absolute GEM of a human being teacher confided in us that she did indeed see some common autism traits in T (difficulty transitioning, need for structure) that we decided we needed to talk to a developmental pediatrician. This began the process of paperwork and wait lists.
We got him into clinical speech and OT that Summer (after a lovely argument with his pediatrician who to my absolute outrage said if we had seen these behaviors before "why hadn't we mentioned them before" -we switched pediatricians immediately following that particular remark. God how I wish we had done so sooner.) as we waited for his turn. He went through the extended school year program and enjoyed it immensely. We met his new teacher for his full official preschool year and she too was lovely and patient.
Finally came September of 2018 when we went downtown to see his developmental pediatrician. 3 hours later he and a child psychologist informed us that T indeed fit the criteria for ASD and I tried my hardest not to completely burst into tears as my son played quietly in the corner. I'm not going to lie. It hurt. All I could ask was if we were too late to get him help.
My main struggle is not that he has autism. I don't want him to hurt bc of it. People can be immeasurably cruel to those who are different. I know he is special but no parent wants their child bullied or ridiculed for being who they are or something they cannot control. I also know that shielding him in a bubble is not fair. I am ashamed to say I am not the best parent he could have. I lack understanding, discipline, patience and so much more.
I am so afraid. So afraid I have done or will do something to permanently damage him or his future because of what I perceive as "right" Or from a lack of understanding of his needs. I know a diagnosis does not change him. It just gives a name to who or how he already was. I just wish I knew how to proceed.
His development pediatrician suggested we continue in speech and OT as well as all the supports I'm school. He did not feel ABA was a default need for T as he doesn't need concepts broken down to that specific of a level. I know there is a lot of controversy surrounding ABA. For now our insurance does not cover it and the main providers in our area have rubbed me the wrong way with their need for a "controlled environment" so we have chosen to hold off on that option. I did try to get him floortime but it is very pricey and largely unavailable in our area. Right now I'm in the process of finding social skills groups and general behavior of therapy to help with general issues at home.
Thankfully T has continued to flourish amongst all this his speech improves daily and so does his regulation. He starts in an ILP kindergarten class this fall. The reason for this long post was to ask any parents but especially teens and adults on the spectrum what is it that you(r) parents/caregivers did or you wish they had done to help you deal with growing up in a world that favors Neurotypicals? What can I do to make life a little bit easier for my son? How do I deal with well meaning but very negative relatives? How can I be a better parent to a child who can't always convey his needs in a way I understand?
I don't want to limit him but I also don't want to push him too hard. How does one find the balance? It feels silly to ask this but how do I know he's truly happy? That the decisions I make about his care are in fact helping him? I know I sound a bit ridiculous but I'm finding myself kind of at a loss for direction lately. These are the thoughts that haunt me late at night.
Any and all suggestions would be appreciated Thank you for listening.
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