New here and overwhelmed

Marcilene1

Hi everyone! I've been on and off the bump since my daughter was born, but I am new to this board. 

 A little background: My children are 11 months apart. My daughter has always been "high needs", but has developed normally and hit all of the milestones on time. My son was "the easy one". He has always slept great and been fine to be on his own playing, etc. He began crawling at 9 months and walking at 15 months, however he is severely delayed in his speech and communication. Our concerns led us to call early intervention and get him evaluated. He also does not point, has little to no eye contact, is often in his own world, and he spins. A lot. 

He was diagnosed with ASD a few weeks ago and will be starting ABA therapy tomorrow. It will be 3 hours a day and he will also be receiving PT, OT, and speech. Although I am so grateful that these services exist and are available for free, I am feeling overwhelmed about starting.

I don't know how we are going to get anything done, how we are still going to function as a family, how his sister will feel (will she feel left out, etc.). I'm just scared of the unknown I guess. I'm also so worried and sad for my son. I don't want him to struggle in life. He has a port wine stain on his face that is rather large and I was already worried about kids making fun of him for that. What if he is bullied in school? I want him to be able to have friends and be happy.

My heart is just breaking for him I just want him to be happy and I feel like he's been dealt a tough hand.

Also, I am pregnant and due pretty soon. It's a boy and I am worried about this baby having similar issues. In addition to that, I am just worried about how I am going to deal with 3 under 3 when one has an ASD diagnosis. Anyway, I will be hanging out here a bit. That's my story. Thanks for reading

Marcilene1

Ugh. I did format that, but for some reason it's just a wall of text and it won't let me edit either! Sorry!

Marcilene1

-auntie- said:

Marcilene1 said:

Hi everyone! I've been on and off the bump since my daughter was born, but I am new to this board. 

Welcome to the best board you never wanted to join. I threw some white space and paragraphs into your text- one of the few perks of being a moderator. Some apps get wonky on the bump. 

 A little background: My children are 11 months apart. My daughter has always been "high needs", but has developed normally and hit all of the milestones on time. My son was "the easy one". He has always slept great and been fine to be on his own playing, etc. He began crawling at 9 months and walking at 15 months, however he is severely delayed in his speech and communication. Our concerns led us to call early intervention and get him evaluated. He also does not point, has little to no eye contact, is often in his own world, and he spins. A lot. 

It's great that you were so proactive around this. Getting him help sooner rather than later will actually minimize the disruptions in your family as you will have strategies earlier on around dysfunctional behaviors.

Still, it's hard to hear and process the dx. With another child who isn't at the age of reason and who is "high needs" it's got to be tough. He's hoping #3 will be a chill little guy. In what way is she high needs?

He was diagnosed with ASD a few weeks ago and will be starting ABA therapy tomorrow. It will be 3 hours a day and he will also be receiving PT, OT, and speech. Although I am so grateful that these services exist and are available for free, I am feeling overwhelmed about starting.

You'll figure it out. Are they coming to your home for these services or will you need to take him somewhere or will he be in a school situation?

I don't know how we are going to get anything done, how we are still going to function as a family, how his sister will feel (will she feel left out, etc.). I'm just scared of the unknown I guess.

It might make sense to find a MDO or preschool for DD so that you can learn from the professionals how to best support your son in the hours he's not having therapy. EI is about serving the family to maximize the outcome- so you'll want to learn along with him at least part of the time so you can be consistent with the program- ABA is more of a lifestyle. Getting her out into the world with typical kids will strengthen her social skills and provide a great distraction for her.

I'm also so worried and sad for my son. I don't want him to struggle in life. He has a port wine stain on his face that is rather large and I was already worried about kids making fun of him for that. What if he is bullied in school? I want him to be able to have friends and be happy.

Happy is what we all want. I'd say my own DS, who has ASD/ADHD/LD/GAD is pretty happy. What makes me happy isn't what makes him happy- but he'd say he has a good life.

All kids struggle. Read my post entitled "sad". You're ahead of the game because you are actively getting him exactly the kind of help he needs to be his best self. 

Bullying is a real thing. BTDT. IME, the kids who get bullied are the ones whose presentations are fairly mild and able to be included in the mainstream. Kids who are seen as very different by their peers are largely left alone and kids who remain very atypical tend to be in more supervised special classes where this doesn't happen. 

My heart is just breaking for him I just want him to be happy and I feel like he's been dealt a tough hand.

You all have. But he's been dealt a mom who is on the ball and siblings who will provide social interaction and companionship. 

Also, I am pregnant and due pretty soon. It's a boy and I am worried about this baby having similar issues. In addition to that, I am just worried about how I am going to deal with 3 under 3 when one has an ASD diagnosis. Anyway, I will be hanging out here a bit. That's my story. Thanks for reading

I personally can't imagine 3U3 under any circumstances. DS was so high needs as a baby, toddler and preschooler I couldn't be talked into a second child which is sort of a shame. I would have loved a couple more but didn't find out about DS's ASD until I was past 40 and too afraid to try again. LOL, I have had my nieces on and off, so right now I have DS 20 and DN#1 who is 33 living here.

If your DS has been seen at a university center ASD clinic, they probably can put you in touch with a sibling program to watch your DD and DS#2 going forward as part of their ongoing research.

@-auntie-

Sorry for the post and run earlier.  Thanks so much for your thorough and thoughtful response.  To answer some of your questions: 

-My daughter is high needs in that she doesn't sleep, needs constant attention/interaction, etc.  She has yet to sleep through the night and is VERY attached to me.  She is normal and healthy, just quite a handful.

-I am a stay at home mom so the services he will be receiving will be at home.  My daughter will (hopefully) be starting pre-school in September.  

I guess we will have to take things one day at a time which is hard for me as I am a control freak and a planner ha!

Thanks again for your welcome to the board.  I look forward to gaining more knowledge about this disorder and its treatment as well as providing support where needed.

I really hope this formats this time!

Marcilene1

DC2London said:

Auntie is so wise.  I'm sorry that you are feeling so overwhelmed.  It's completely understandable.  You are doing the best possible thing by getting him intervention so early.  This will be a wonderful thing for him and for your family.  Welcome to the board, and best wishes for a happy, healthy new baby.

Thank you

CaptainSerious

Hello.

I don't have much to add, but wanted to let you know that it's completely normal to be overwhelmed, not only in the beginning, but also at times down the road, as you are living with the day-to-day realities.  We've all been there, and we are all here to offer support.  It's a big adjustment for us as parents to recognize our new reality and then to advocate for our children and ensure they get all the help they can to reach their full potential.  It's clear from everything you've already done that you have the strength to be his supporter and advocate.  Know that, own it, and let it be what propells you forward.  You got this.

Junebug060609

Auntie pretty much covered what i was going to say, do I will just chime in as someone in similarish shoes.

My DS is almost 2.5. We got an ASD dx in Jan. He starts a special needs pre-school in two weeks. I am due with a baby girl in May. Like you, I am very concerned about her having ASD or something related.

I am also a SAHM and have found being present for his therapies teaches me a lot. It also provides continuity in how things are done. Dont be afraid to tell those scheduling things that your family needs a certain day or time of day to just be a family or, you know, time to do things like grocery shop so you can eat Burning out wont do any good in the big picture.

mommy0411

Welcome! My DS1 also has ASD! He was diagnosed at 21 months and I was 6 months pregnant with DS2 at the time. The anxiety around having a second child with special needs can be very over whelming. I know for me it got to the point where literally all I could think about was my kids' development. I do have anxiety and I was also diagnosed with depression around the same time. My best advice is don't hesitate to reach out for help if you feel yourself getting overwhelmed. Getting help was one of the best things I have done for myself and my boys. Luckily DS2 is looking NT but it will be a while before we know for sure. You have done an amazing job getting your son services and a diagnosis early. Also, yes he may struggle but it will probably be a long time before he realizes he is struggling (though trust me I feel the same way). My DS1 is one of the happiest kids i have ever met! He has no idea he is different and he is in a NT preschool right now.

bliss611

Welcome to the board. I am pretty new here myself and know exactly how you feel. DS recently received an educational dx for ASD so I am in the process of scheduling therapies as well. It is overwhelming. You'll find a lot of support and advice here.

Good luck with everything!

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coffee bean

Welcome! This is a very supportive board. The overwhelming feeling is so normal and it may be awhile before it goes away. Now that I sort of feel like life isn't as stressful and that my daughter is overall getting the support she needs, it makes me realize just how looooong I felt so overwhelmed and in general, didn't let anyone know about it. It sort of felt like that depression commercial where they have the rain cloud following them around (hope I'm remembering that correctly - lol!).

My daughter was diagnosed as developmentally delayed at 3 and officially diagnosed with ASD at 5 1/2. She has an identical twin sister who is not on the spectrum, which brings on its own set of benefits and challenges.

My best pieces of advice are:
1) Ask all the questions you want, there is so much to know.

2) It's a marathon, not a sprint, and trust me, when you figure one thing out a new challenge will come your way.

3) Make time to be alone with your husband. You need each other more than ever.

4) Life will go on. It won't be what you expected, but in those unexpected ways, it can in some ways be better.

Marcilene1

Thanks so much for your responses everyone.  I apologize for not responding sooner, but, you know....overwhelmed lol.

My son started ABA on Monday and so far that is going well.  I think he is exhausted though.  We all are.  

I will be around.  Hopefully more regularly once we get used to this routine a bit more.

Thanks again for the support and information.  It really means a lot to me.

Assembly_Reqd

Welcome!

ksukitty1979

Your story sounds very familiar to mine.  First I will say that the younger child might be the best thing for your son. We were so worried about my son's younger sibling having his form of severe autism.  But she didn't, not only that when she started typical development it really helped him.  His therapists are convinced he would not have made the progress he has without her.

Early intervention is the key and seems like you have that under control and doing a great job.  I will tell you at two my son was non-verbal, did not like to be touched and would bang his head to the point he had to wear a helmet.  Now he is talking, plays with his little sister all the time and hasn't worn the helmet in over two years.  If you ever feel overwhelmed just know it is very normal.  You may want to look up respite care in your area as well.  Also, there are groups that provide parents night outs and many other family friendly events for children with Autism.  Our local Goodwill Easter Seals does a lot for us and the community.  They even have a special Autism trick or treat event that an entire neighborhood hosts the week before Halloween. 

If you ever need any advice feel free to pm me.  I felt exactly like you five years ago.