Since my son was in preschool I noticed he was a lot less verbal and reverted to biting and mischief. His behavior posed a red flag for speech and language delay and I immediately had him evaluated by CPSE (Committee on Preschool Education). When I chose this route I was confronted with some backlash from a few family members, even my husband was a bit skeptical but they just didn’t understand. I watched him through a camera because I was the Director of the preschool he attended and I saw what was going on. That had to be the toughest thing for me, but it was my REALITY check. I even had the CPSE supervisor say to me, “stop being such an educator”. That stung but I knew what I was SUPPOSE to be seeing at his age developmentally.
Years have passed and now my husband is thankful for the road I took and the one he eventually has supported me in. I still have those people in my family who say, “he’s just SPOILED” (sometimes his behavior can come across this way) or “What do you expect, you waited so long to have your second kid” (5 1/2 years to be exact–really??) or I get the occasional, “You cater to his every need”….well he is a child, that’s what GOOD mothers do right? Point is when he was given a diagnosis many still didn’t want to believe it. Of course, I cried but I knew that crying would get me nowhere! I acted and got him the services he needed and continues to require.
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Although I have seen many accomplishments with the services that he receives our journey is a work in progress. My son is verbal and his actions although sometimes inappropriate, don’t make his ADHD or Asperger’s that noticeable. Although I hear many say with an autistic child it’s quite noticeable due to the flapping of the hands or other movements, in the case of my son it takes time to notice. A prime example is him asking questions repetitively (the same question over and over again even though he’s received the same answer a million times), a fixation on something, thriving on routines and if they are broken all hell breaks loose, unusual body language, his dazed look because of the medication and the list can go on. Many family members don’t understand these behaviors!
The unusual body language sometimes leads to the awkward stares from others which doesn’t even phase him because oftentimes social cues he just can’t figure out. They “bothered” me as a parent because you know someone is looking at your child and thinking, “he’s awkward”. They don’t bother me anymore, because I am far beyond caring what other people think. I do know that these behaviors are considered to be thought of as, “immature”. His size confuses people and many just don’t get it and guess what? They don’t have to!
I rarely allow him to go out with anyone because just the other day he said, “Mommy, I went in the mens bathroom alone!”. I almost cringed! Why? Well, again he may stare at someone or say something inappropriate and considering his size, they may take it offensively not knowing that he doesn’t mean anything by it. Family wouldn’t understand it, and they don’t because that person allowed him to go in alone. I told him to NEVER ever go in alone again and just do what we do if we are out.
Some may think I keep him isolated but until my family understands what it means to raise a child with ADHD & Asperger’s I move forward cautiously. I am his voice and when a family member reverts to uneducated ignorance I speak up for him. In fact, I speak up for him to anyone I have to. You don’t have to understand ADHD or Asperger’s but you should educate yourself on the various forms of disabilities before you pass judgement and frown upon others.
Does your family understand that you or child have a disability?
I undetstand everything you are saying. I went thur alot with my oldest son. And igot him all the help he needed. But with my youngest im going thur alot in heaf start he having alot of problem answering question about a book etc. He speak is not clear. Im waiting to have tested .
Thanks so much for reading, Mindy!
I am happy that I am NOT alone (sometimes it can feel that way) and that we can all go through these struggles together! We have one another to lean on.
Thanks for sharing and I wish you the best.
xo
I understand what you mean. My daughter too seems immature to others. The impulsiveness is so hard. I too hope she doesn’t insult the wrong person. I also hope she is not taken advantage of by people because she is so trusting and giving. It can be hard. She too appears normal until one has spent a lot of time with her. When on meds, many cannot tell. Be here in evening without meds and before bed, completely different story. God bless you on your journey. You certainly are not alone!!
Thank you for being here for us. My teenage son doesn’t want my parents to know he has Asperger’s. I promised to keep that secret, adding that it’d be his decision to say anything. We only see them 2 weeks out of the year, so we do our best to slide under the radar. He’s right. They probably wouldn’t “get it”. I wish you all luck in your journeys with your wonderful, unique children.
For many many years the family back lash was horrific. Advocating for my son, was a full time job. I cried so much, the exhaustion was over bearing at times. I refused to be dismissed or denied services by the Board of Education. As a young man now I can clearly see how high functioning he is, and how perseverance has paid off. He still asks tons of questions, needs help with organization, but he’s an electrical apprentice, a dedicated boxer & mixed martial artist. It’s a long road, but you need to do what you know is right and let others know when they are wrong.
Jane,
Thanks so much for sharing. You give me that breath of hope!
I know my son is intelligent and that he will get through it because he has
me right by his side. Your son is blessed to have you!
I appreciate you stopping by and reading.
I appreciate your support…
Eileen 😉
You are a great mom and wife, and your family so blessed to have you. Your kids are doing great and is all thank to your devotion and love. Happy 2014 my dear. Love u always!
Eli…
Thank YOU for reading and for your constant SUPPORT!
YOU are an inspiration!
Thanks for stopping by and commenting—your time is appreciated, sissy!!!
xoxoxoxoxoxo
Sounds very familiar. Even though my son has Down syndrome. His diagnosis was confirmed 5 days after he was born 11 years ago, so I didn’t have to deal with the doubters, early intervention started immediately, as did my attempts to involve family and have them learn as I did. Still didn’t work. To this day I have people telling me what they think I should do despite their limited interest in our lives. Like you, I’ve given up caring what others think of me doing the best for my son. xo Keep up the good work xo
Sandra,
Thanks so much for reading and commenting!
I agree—we need to do what is best for our babies!
All the best my friend!
Thanks again,
Eileen
My oldest has ADD. He not hyper active, but his attention span is so limited. I find it funny that people dismiss these disorders as new parents being oversensitive. Obviously, they’ve never paid attention or has a child with these type of issues. The disorders are very real and impact the child’s behavior. I do confess to going back & forth worrying about my son using meds. He hates them & they make him gag :-(.
Kudos to you for being your son’s advocate!
Brandy,
Thanks so much for reading and sharing your story.
It kills me to have to give it to him but of this is what maintains his focus in class, I must!
We have a method that we use–it’s a pill and we just throw it to the back of his throat and it falls right down. He washed it down with water and that’s it!
I went through my hard times with the gagging and crying though–NOT EASY!!!!
Thanks so much for your support!
Eileen
I have an 8 yr old daughter, she’s the light of my life and she has asperger’s, adhd, and ocd. I’m a single parent and although she was diagnosed 6 yrs ago, my mother has never shown any interest in finding out what it is, or what it is like for my child to deal with these daily struggles, and because my daughter is big for her age, she is expected to behave like an older neuro typical child. Unfortunately, there is nothing we can do in regards to other people’s ignorance if they are not willing to stop being ignorant.
My child’s path is a difficult one to walk upon, and for me is hard to see that both she and I are walking it alone…. and she has no one else she can count on to be her voice when she can’t express it for herself and I’m not around.
I’m so glad to here I’m not the only one. My mom understands and supports me through the difficult times. My husband and everyone else refuses to believe his diagnosis. They think that its just a fad. That its an excuse for him to get away with everything. I discipline him accordingly. I refuse to spank him just because he has a meltdown. Meltdowns are hard enough. If I started yelling and spanking just because, it would do more harm than good. My husband and I rarely go on dates because when we do our son has meltdowns. So we went on a date, came home, when Nana tried leaving, he had a meltdown. Nana tried to help me calm him down before she left. It was no use, so she left. I was just going to let him scream it out. My husband couldn’t stand it so he grabbed our son. As soon as he grabbed him, I had to stepped in. I saw what was coming. Thank goodness my husband is afraid of what I will do to him if he ever hit our son. He let go and walked out the door. My son continued to scream for 10 mins (short meltdown for him). He fell asleep as soon as him head hit the pillow. Now for my husband, he is pissed because, he ruined his night. He feels like I spoil him and there is nothing he can do or say that will stop me. In my opinion I don’t spoil our son. I do know when to stay calm and not get frustrated. He on the other hand doesn’t. Sorry for the vent. I needed to get it off my chest without discussing our “dirty laundry” with people who know us and judge us.
Thank you for posting this. I am the Mom of an 8 yr old Aspie boy. I love him, every bit… The quirks, the insights, the playfulness, even the single minded focus on one subject. I do not love the tantrums and meltdowns, but I understand that this is part of who he is. However, my sister, who has never married nor been a mother, doesn’t get it. She thinks he is just a quirky, super smart NT child. She can’t handle it when he has a meltdown, and is always sticking her two cents in. She knows about his diagnosis, but has done absolutely zero research into what life with an Aspie can be like. So, when my son breaks the rules and I take away a privilege such as popcorn or a movie before bed, and he goes into a full blown tantrum where I must stand firm while being screamed at, hit and having things thrown at me, she accuses me of ‘feeding’ the tantrum. I refuse to give in. He screams. I speak calmly to him. He screams. I tell him “no, you are not getting (whatever) because you broke the rules.” He hits me. And screams. And cries. And she says SHE cannot take the screaming and that I am adding to his tantrum. Yes, the obvious solution… Remove him. Take him home, or ask her to go. Except we live together in an extended family household. We ARE home. ALL of us.
Hubby is no help. He has as much patience as a two year old who missed nap time for three days straight. Nor will he stand up to defend me. I’m left parenting on my own, and being made to feel like everything I do is completely wrong.
I get why the ‘parent’ parent of an ASD / ADHD child often struggles with depression. I’m there.
I guess I’m just happy to know that I’m NOT alone. Thanks for being a voice for all of us.
Happy New Year. 🙂
I am a single mom to a wonderful loving boy..he has just been diagnosed with anxiety ODD aND ADHD…H
he started concerta 3 weeks ago…there has been an improvement ,his melt downs aren’t all day everyday and as severe . I think either he needs a high dose or as I always wondered…does he have aspergers? I can go on with the symptoms but I wont, he has a lot of them..he is very high functioning and intelligent . But he is like a light switch…
Lately I have comfortable to realise I need help. I am miserable,waiting for the bomb to go off, the screaming hurts my ears now..I feel like I’ve had enough…I can’t handle it anymore…my patience is gone, I feel like I have no empathy for him anymore and that’s makes me goto sleep,if I sleep with extreme guilt…I love my boy, he is my entire life..but I struggling now..I never smile, I cry and I’m angry ALL the time…
Thank you for allowing other parents to find each other and know that we are not alone. There are days when I feel “i got this” and days when I cry and wanna run away…literally just run away. My son is diagnosed with ADHD and is currently being evaluated for lots of processing disorders, Aspergers, etc. He is so sweet but can flip the switch so fast. I myself have ADHD and Anxiety and there are days when we just clash and/or I am affected so deeply because I understand in a way that other family members do not. What really is the most frustrating is the interactions with immediate family members and their questions, denial, and the ever so fun statement, “oh no he can’t have XYZ he is so smart and sweet!” AND to boot I am a Mental Health Therapist and they still argue with me..I really just feel like I should carry around cards with links to websites on them. Seriously I should make them, and for those people in public who judge me like I am a bad parent when they do not know anything about my life or my child’s needs.